[TMIC] Push Girls
The name alone raised my hackles. I dislike intensely calling women girls -- especially in the media. Thank God newscasters haven't said that as most of the US Gold Medals thus far are from women athletes. And when I saw the cast, sigh, overly made up, bloom off the rose/hard, and crossed legs… One of the tells I tell friends about is leg crossing -- as that is a thousand percent more movement than I have. These show make me have to explain again, that, I am truly paralyzed, as in can't move my legs, so no hopping on and off a seat at a restaurant or coach (as a couple of characters do) is possible for me. If I could cross my legs, hop up on one wheel of my wheelchair to reach groceries (as Auti did), or have people at my beck and call to dress me, move my legs or pick me up and put me on the toilet (these are all scenes from the show), chauffeur me around, take me bowling my life would be sublime, never mind the unrelenting pain I endure that's attendant to TM. I keep trying to watch, but something they will say or do, so disgusts, dismays or discourages me -- because I don't have the mildness of injury or the ease of access or the extent of support or the mildness of weather--- It may be an EastCoast/ NY vs West Coast thing, too, there's so much superficiality it's hard to take…. (LOL, I'm reminded of the rappers' dispute. I, too, can never understand why people who have warm weather and sunshine, who can pluck fruit from trees in their are nearly year round think they have overcome anything. I've visited Lala land in the 60s, the 80s and the 90s and spent a lot of time in SF in the late 90s) Or that none of what I saw depicted any mutuality of interest -- the musician who doesn't practice, the swimmer who has access to a gym and pool but hasn't swum, no on reads or goes to a library, or makes anything (other than money or whack omelets) Maybe it's the unreality of Reality Shows… I just keep hoping no one i know watches it. On Aug 9, 2012, at 12:08 AM, Betty Clark wrote: Just curious... has anybody else caught the new reality show Push Girls on the Sundance cable channel? It features 4 paralyzed women in wheelchairs (plus a new 19-yr-old teen) - each with a different severity of injury. They are absolutely amazing with the things they accomplish and the confidence level they've achieved! They are a real inspiration - much like Cody Unser and could possibly be very helpful to others in realizing what can be done, even under adverse conditions. First-run episodes run at 10 pm on Mondays here in the Northwest of the U.S. Catch-up episodes run on Sundays starting at 11:30 am. If you haven't seen them yet, google push girls and check out the different clips. Betty (in Northern California).
Re: [TMIC] Push Girls
Thanks for grokking me, Dalton! Yes, real adults and genuine and lived-in personalities. This week has been full of joy, though. The heat relented --- we've had 50 degree nights after 80 degree days. I had company and got to share and show off new recipes (gazpacho and salmon fritters). Seeing Aries leap hurdles like they weren't there and watching Curiosity touch down again and again (O Ray Bradbury!!! how i miss you!) Thanks for the purple-- my favorite color and the color of my Pilot Precise V5 pens. Hugs, Akua On Aug 9, 2012, at 7:41 AM, Dalton Garis wrote: You really hit it, my dear one, Akua; The superficiality, the set scenes and sequences, the uniformity of light, sound, of character interactions, all preprogrammed, that make it like eating spam. So sorry for your pain and additional mental burdens caused by this unrelenting superficiality and sanitization of anything having to do with representing difficulties such as what the really paralyzed face moment by moment. Don't you miss real adults? Don't you wish for some actual exchanges between genuine and lived-in personalities? DG Dalton H. Garis Flushing, Queens New York, USA Mobile: 718-838-0437 Landline: 917-285-2047
Re: [TMIC] Push Girls
Auti is the former dancer who crashed after selling her body for money. She's a paraplegic. Angela, the quadriplegic, a former model, had those stem cell treatments in Panama ( I think) which restored she said lots of function. She had the money to undergo this back then -- about a decade ago. I sure wish I could afford it! Getting the able bodied population to look at the population that uses w/c is extremely important in order to further the cause of things we need, ie public transportation, support, access to jobs, good medical care, etc. I agree, but this show doesn't help do that. No one is shown trying to get on a bus, (or any public transportation for that matter) or having/trying to roll down unshoveled streets or getting to a corner where the snow and slush is piled high so you can't cross the street -- even if there are curb cuts. Or getting on or off a sidewalk without curb cuts….. Angela (the quad) did say a bit about the cost of her care in one episode and how that was driving her to try and find a way to make money and re-enter modeling-- not a pragmatic option for 99.9% of the general population, never mind the disabled. And it seems her husband, an actor, left her I'm glad your daughter found something in it. Even waste can be used as fertilizer. Doesn't mean it isn't dreck. But since I've never heard of ( nor probably will I ever hear) push boys , i chafe against the nomenclature push girls -- which, despite their affirmations, belittles and diminishes. Girlification doesn't make decision makers take your needs or your situation seriously. Akua On Aug 9, 2012, at 9:50 AM, Mary Anne Egan wrote: You raise some valid pointsmy daughter is ten she has been paralyzed since she was an infant. We met the youngest member of this cast and she was so excited. I appreciate that being on TV affords liberties the rest of us do not have. But to my daughter the name girls softens it for her to appreciate more than woman and I would normally be the first to argue about calling a woman a girl. In her case it is useful. As for the ability of Auti the quad, what I saw was that she has help that gets her dressed and that she also had some stem cell treatments in South America(?), nonetheless to me this is all about baby steps. Getting the able bodied population to look at the population that uses w/c is extremely important in order to further the cause of things we need, ie public transportation, support, access to jobs, good medical care, etc. No one would put on a show about quads who were totally dependent for care because people would not want to watch it. In doing it this way, many folks, who are otherwise not exposed, are getting to see how people who use chairs, are in fact people first. The logistics of how they present this is always going to be hollwood-ized it is no different than any other show/reality show. I am sorry it upsets you but I do see the benefit of raising awareness and the ability for my child to see an adult female who is happy, and enjoying life despite the obstacles she faces, it is incredibly empowering. My daughter has not seen the show it is too grown up, but when she met the youngest member of the cast, she felt empowered and we watched some bios on line. The woman talked about what a push girl is and how it means to push through when things are tough, we have used that many times and she gets empowered by it. My daughter only crosses her legs by accident when her legs spasm, in the night mostly and she is all tangled up in her cath/drainage bag...not exactly the hollywood moment for the show! who knows this show may enable adults in our community to be willing to have my daughter over for a play date without being afraid. That would be so worth it!
[TMIC] Push Girls
Where did you see that Auti sold her body? On the show. Not to belabor this, but it was Auti's description of what she did the day/night of her wreck, something she regretted… she seemed to suggest that her guilt about this, is what led her to the accident, that she was upset/ashamed and not focusing….. To clarify: As a result of T/M, I am paralyzed in a manual wheelchair and the lower half of my body hurts constantly, ceaselessly burning, squeezing and stabbing. Since I'm afraid of cognitive deficits, because I depend on myself alone to take care of myself, I live in more pain because I've never taken the neurogenic drugs. T/M decimated my savings, nearly left me homeless, cut off most of what I did - from hot glass, to large scale sculpture, to performing and presenting my work, to kayaking, to playing the tenor saxophone (it's huge and hard to hold in the wheelchair); and the reaction by others to it, resulted in the loss of my job and profound social isolation. I live alone on the first floor of my two story house in a small town that has no paratransit and hire help to mow the lawn,buy my groceries and shovel the snow. I could use more help, but I can't afford it. So yes, the show does bother me, because I see the opportunity to educate or make change, wasted. Lots of shows entertain and educate - a little truth goes a long way. I LOVED GLEE for its inclusion of, among others, a wheelchair character. There were story lines about inclusion and accommodation -- how he had to get to competitions outside the school, the time everyone got in a wheelchair to figure out what he faced. It struck home because the last reading I did in town, back in 2008 when I first came home, was at the major middle school, where they assured me they had access. The school bus hired to convey me had tie downs but no seat belt at the wheelchair spot. The wheelchair entry was steep and around the side and down the back and vey scary to negotiate. The little elevator did not quite accommodate two, but could not be opened and closed by the wheelchair user alone…. I love the Xmen for the Professor Charles Xavier character (with my heartthrob Patrick Stewart depicting him in the film) who is their leader in a wheelchair, in both the animated and the live action. He's brilliant and wheelchair bound. Though as I hope for me, I'm sure his future holds an exoskeleton/walkingmachine. I loved when Private Practice included an emotionally complex character in a wheelchair a doctor who said at one point ask me. O and his wheelchair was an education to me -- I didn't know they had wheelchairs that stood until I saw his in action! I think these fictional depictions have in their bits, been more educative and definitely more affirming than this reality I wish I didn't care -- and if I were able bodied, I wouldn't and certainly wouldn't watch, because when I was able bodied, i watched far less TV. But sadly I do care, because I'm a woman in a wheelchair, now in yet another unliberated minority and I have to attend to how my group is depicted. Akua A
Re: [TMIC] Push Girls
Well you certainly have offended me! I wrote about A SHOW and you've resorted to character assassination. I said NOTHING about ANYONE'S PERSONALITY or situation nor unlike you, did I DEMEAN or CASTIGATE ANYONE! I don't know What ATTITUDE you talk about. Your passive aggressive nasty remarks are anathema! I thought this was a SAFE place where I could SHARE MY PAINS AND CONCERNS WITHOUT PUTTING ON THE HAPPY, STALWART MASK THAT THE WORLD DEMANDS. IT IS NOW SADLY OBVIOUS TO ME THAT THIS IS NOT A SAFE PLACE, WHEN I AM ATTACKED FOR DISLIKING A MONEY COMMERCIAL CONCOCTION! You say this to me because of what i say about a TV show? BTW -- I'm wondering what treatment you speak of? The fundraising done by the local arts community so that I could stay housed and fed when the job I was at short shrifted me? The poets around the nation who raised money for me when I found out there was a long wait to get insurance? The alumni from Williams College and Columbia University who raised tens of thousands to help make my home accessible? All of this does not belie the grind of daily struggles. Since I listen, I know I'm not alone with hiring help that does not help, I'm not the only disabled person here without paratransit -- it doesn't exist, so it doesn't exist for more than just me. But to insult me for my unafraid plain talk, to BLAME me for the ill treatment I've reported is to blame the victim. That's LOW and limited. AKUA On Aug 9, 2012, at 2:52 PM, Betty Clark wrote: I'm not trying to offend you, but I wonder sometimes from your postings if you present the same attitude towards the people you interact with as the one you exhibit here. If not, I apologize, but if so, I'm not surprised at the treatment you receive. I have almost never been confronted with anything less than courtesy, cooperation and assistance if needed when out in the public. Most folks can spot a chip on your shoulder attitude in a second and will likewise turn off. You get what you give and unfortunately for the disabled, you often times have to give a little more than you're used to, want to or should have to, in order to get back.
[TMIC] NSCIA Webinars/Choosing Wheelchair
http://www.spinalcord.org/resource-center/askus/index.php?pg=kb.pageid=1412 http://www.spinalcord.org/resource-center/askus/index.php?pg=kb.pageid=1728 Akua
Re: [TMIC] NSCIA Webinars/Choosing Wheelchair
Jim: I miss the water terribly! I swam and kayaked before T/M, so I share your desire to be in our first medium, again. You're blessed to have folks to work it out with you! I look forward to hearing of your return to water. Akua
[TMIC] Re: wheel Chairs
I love my Quickie 2. foam insert tires so i don't have to worry about inflation I use a Jay ez -- gel/foam cushion in it. I remember trying a heavy medium and light chairs and being told the differences when i was in the hospital…. the hospital chairs were just awful….. It was fitted for me --- important part of getting the right chair -- i remember all sorts of measurements and observations of how i sat etc. Although my physiatrist says there are better options. I had shared the free online webinar on chairs -- it was very good. perhaps the transcript is available online if you google it.
[TMIC] Provigil
Just saw a TV story on it the day before yesterday http://abcnews.go.com/GMA/video/provigil-brian-drug-awake-focused-24-hours-16810963 I'm interested--- this heat has keep me exhausted!
[TMIC] Re:UNBELIEVABLE
YAY! I Treasure THESE STORIES OF HOPE AND RECOVERY. Wonderful news, Cheryl!
[TMIC] Re: Polishing the Wood, Polishing Self
Hi Dalton! As next year is a big one for me, I'm trying to finish and send out a couple of manuscripts and get back into making music, somehow from the wheelchair. As the weather goes from hot to cold ( 85 degree days to 40 degree nights) I'm finding it challenging to stay up as my body is not good at temperature regulation. I was hurt to find a site illegally selling one of my patterns. And the site (in China) has blocked my IP address. Sigh. If I did not have transverse myelitis, I could take it in stride -- but paralyzed and having devised this way to put a few, much-needed pennies in my pocket, this feels devastating. The challenge is not just the physical challenge of pain, disability and energy, it's that all this leaves me feeling more pain . I now know all the places to lodge a complaint, but I've heard from none of them. Nothing pleases me more than having some smoothed piece of beautiful wood in my hand, like Birdseye maple, walnut burl, red oak. I wear a duck call around my neck at all times. If a seizure strikes I can blow it to get attention. You see, this is New York; you don't use a coach's whistle, or everyone will run away, thinking it is a policeman. The duck call makes people turn around to see what it is, with open and innocent curiosity. That is the attitude I want when they see me asking for help because I am having a seizure. And also because this is New York, if you have even a gran-mal, no one will notice. I only wish I could polish my soul as easily as I polish a wooden duck call to make it as beautiful as possible. But it is not so simple. Polishing the duck call wood does provide a lesson: by hard work its hidden beauty will come out, and by no other way except hard work is this possible. And, you cannot make it better than what beauty it inherently possesses. I beseech Thee, O my God, by Thy beauty, stinging forth above the horizon of eternity, a beauty which, as soon as it revealed itself, the kingdom of beauty boweth down in worship, magnifying it in ringing tones, to grant that I may die to all that I possess and live to whatsoever belongeth unto Thee. Thou seest me, O my God, holding to Thy Name the Most-Holy, the Most-Luminous, the Most_Mighty, the Most-Great, the Most-Exalted, the Most-Glorious, and clinging to the hem of the Robe to which have clung all in this world and in the world to come. — Baha-u-llah These are such beautiful, inspiring words! I am so glad you've devised a way to get assistance. I pray that a solution arrives. Joy in the making, Akua
[TMIC] Re: Successful Surgery
Hi Jeff, Congratulations on your successful surgery. Was this Albany in New York? The night before last I had a long dream, that only as I began to waken did I realize was a dream -- I was climbing a hill, running around and realized that I had left my wheelchair and didn't have time to go back and get it. When I work, I told myself, that I could forget about it, and maybe one day, wake and stand. Sometime I tell myself the pain is the pain of awakening, or of nerves growing. I pray this is so for us all… that any pain is the pain of repair, regrowth and healing. Thanks so much for that story! I cherish it and the possibility if offers. Hope always, Akua From: jeff bernier jeffsmokeea...@yahoo.com Subject: [TMIC] successfull surgery Date: June 27, 2012 6:37:16 PM EDT To: tmic-list@eskimo.com, msersl...@yahoogroups.com howdy! havnt been on in ages,hope everyone is doing well,had my surg for my baclofen pump replacement,everything went outstanding and the pump is working well,had it done at albany med center and thourghly had an excellent experience with no aprehension or nervousness what so ever,spent 3 days in the hosp and had some unbelievable pain killers,wow,had an even better time flirting with some very beautifull nurses and didnt want to go home i have been hearing alot of stories and even know someone who experienced this.i heard of a woman who was dx with ms 20 years ago and spent a vast majority of this time in a wheelchair and suffered through all crazy stuff we do,tingling,numbness,muscle spasms,bladder issues(etc.etc).she woke up one morning and put her legs over the side of the bed stood up and walked and had no symptoms at all ,other than some muscle weakness which therapy took care of,she is symptom free and is living a normal life like nothing ever happened.what the heck,thats a dream of all of ours,ive been in this dam chair since 2000 and other than the first 2 years of this have never given up hope of walking.ive always had it burried in the back of my mind that somday it will happen and then i hear stories like the one i wrote about. have any of you ever heard of this happening?and what are your opinions on this. to you new tm'rs and ms'rs,use this as a lesson of hope to never give up or quit,the first 2 years is hell untill you get into a grove and start accepting changes. jeff tm 2000,ms2005
[TMIC] MRF Achieves Phase 1 Myelin Repair Clinical Trial Three Years Ahead of Schedule
Getting closer and closer to our needs... Today we are extremely pleased to announce that the Myelin Repair Foundation has achieved its goal of a myelin repair Phase 1 clinical trial for multiple sclerosis three years earlier than expected. This achievement illustrates the effectiveness of our innovative Accelerated Research Collaboration (ARC) Model to advance research forward, moving closer to the development of a myelin repair therapeutic for MS patients. However, even with this incredible success, it is paramount we continue to aggressively push research forward into multiple clinical trials, giving us the best chance of developing an effective myelin repair drug as rapidly as possible. With our support, MRF Principal Investigator Dr. Robert Miller at Case Western Reserve University's research has now entered into a Phase 1 clinical trial. This trial is being conducted at Cleveland Clinic, examining the efficacy of a new myelin repair therapeutic pathway with mesenchymal stem cells (MSCs). For more information on the clinical trial and other multiple sclerosis trials in progress, please visit www.clinicaltrials.gov. As momentous as this milestone is for all of us at MRF and MS patients worldwide, this achievement would not be possible without your generosity. Now more than ever, we need your support to continue to optimize our success. Thank you. You may read the full clinical trial press release here, or learn more about MRF's recent research breakthroughs by visiting our website at www.myelinrepair.org. Best regards, Myelin Repair Foundation Staff
[TMIC] Nerve Transfers for Spinal Cord Injury
HEALING THERAPIES NEWSLETTER This is the 60th newsletter© associated with www.healingtherapies.info, the purpose of which is to expand the healing spectrum of people with physical disabilities, especially spinal cord dysfunction. This issue targets individuals with quadriplegia. Specifically it discusses the creation of new connections between still-functioning, upper-arm nerves and paralysis-affected nerves servicing the lower arm and hand. Please support those who have made this newsletter possible. Specifically, consider subscribing to PN/Paraplegia News (subscribe 602-224-0500 or www.pn-magazine.com), or donating to the Paralyzed Veterans of America's Education Foundation, whose support of diverse educational and training activities have benefited many with paralysis (www.pva.org ). Check out Alternative Medicine and Spinal Cord Injury: Beyond the Banks of the Mainstream at http://www.demosmedpub.com/prod.aspx?prod_id=9781932603507 or Amazon.com. (rated 5 stars by readers). This is an instructive book for anyone, with or without disability. Learn more about divergent function-restoring therapies for spinal cord injury at www.sci-therapies.info. PERIPHERAL-NERVE TRANSFERS (Adapted from an article appearing in the April 2012 PN Magazine) Periodically, I've discussed peripheral-nerve transfers or rerouting, a procedure which has considerable potential for restoring some function after SCI. Basically with such transfers, peripheral nerves emanating from the cord above the injury site are surgically redirected and connected to paralysis-affected nerves below the injury site. This establishes a functional neuronal connection from the brain to previously dormant muscles. Because only a specific muscle or muscle group is restored, it is not a cure-all for paralysis; nevertheless, substantial life-enhancing function may accrue. In spite of daunting neuroanatomical terminology, these procedures are conceptually easy to understand. For example, visualize a house in which the power to the back bedroom has been lost (i.e., area below the injury) due to a burned-out master cable (i.e. the spinal cord injury). Instead of fixing the master cable, you split the wire that controls the still-functioning living-room television. One segment keeps on powering the TV, while the other is connected to the bedroom, totally circumventing the damaged section of the master cable. Although some of the pioneering work was done in this country over 50 years ago, unfortunately, the procedures faded into obscurity here. The preponderance of clinical experience with them was gained in China, a country possessing one-eighth of the World's SCI population, including many victims injured in massive natural disasters. For example, nerve-rerouting was used after the 1976 Tangshan City earthquake, which killed nearly a quarter million and injured 400,000 people. A decade ago, I was invited to China to observe first-hand these surgical procedures and the stunning return of function that often resulted. Reported in the April 2002 PN, my article was one of the first to re-introduce the concepts to Western audiences and piqued the interest of several scientists, including Dr. Justin Brown, currently at the University of California, San Diego. At the time a relatively junior neurosurgeon trained at some of the country's leading medical schools, he was receptive to learning about innovative approaches for treating SCI, including those not well appreciated in the U.S. He open-mindedly sought the opinion of my Chinese colleagues, traveling to China to learn more. With the understandings and insights he gained from these and other international collaborations, Brown started developing his own rerouting methodology. Although the benefits are still to be determined, his efforts are especially important because it helps to bring back to America a focus on a forgotten, function-restoring surgical approach that has benefited many Chinese. Procedure As discussed in a 2011 issue of Surgical Neurology International, Dr. Brown has focused his initial efforts on creating new connections between still-functioning, upper-arm nerves and paralysis-affected nerves servicing the lower arm and hand. Basically, his overall goal is to generate additional hand function for individuals with cervical injuries. Although Dr. Brown has now rerouted nerves in several individuals, his article focuses on the procedures used with the first subject, a 28-year-old male with a C5-level injury sustained 13 years earlier from a football accident. Due to this injury, arm function was limited to the shoulders and biceps. Four years after injury, the patient started using the Freehand functional-electrical-stimulation (FES) device, which allows the user to
[TMIC] the pain
Cheryl, Thanks as always for sharing. I can't play the game of choosing poisons, it hurts too much. I am grateful to be able to create, I grieve daily on my inability to create in the way I once did. I need to stand to lift 30 pound ladles of hot glass, to cast large sheets of paper. I need to walk up or down stars to get to my looms and my kilns, my beaters and my grinders. The inability to walk in a tiny town means I can't get anywhere to present, perform, teach, learn, explore, see. During March as a part of National Crochet Month I participated in an online group's daily freeform challenge. I made something new every day, sometimes multiple time a day and the result of this was a ton of work -- a triptych, a new alphabet design, and lots of new skills, ideas and pieces. I couldn't go to the store to buy fabric to mount the triptych, took my chances buying the material online and after sewing the pieces which turned into 3' wide panels -- i need dowels to hang the panel. while dowels are also online -- I can't afford to pay the exorbitant shipping -- 20 and up for what is $5 worth of wood -- and to get someone to go get it for me is $20/hour plus costs of materials with the uncertainty about getting what i want -- and there's no way for me to get to the hardware store, less than a mile away. So I can't finish my art, and unfinished, it can't be sent, submitted or delivered. And it's all the fault of T.M. I undertook a correspondence course to certify me to teach crochet, got the certification, lined up three jobs ( amazing, even in this economy), created curriculum and then spent six months trying to find a way to get to the sites. Even with a disabled jobs firm (via social security) working on my case, where the worker visits mainly to hang out because there's nothing they can do for me. EVeryone else they help, be they blind or mentally challenged - can walk, can get to where they need to go. So I envy the stories of those who found new things to do or new ways to do things. I am smacked at every turn. All praises for the internet so i can get glimpses of shows and art, and have discourse and discussion. The lessons of T.M. have been horrible -- did I need to know who wouldn't be there for me? Is there some after that this sad knowledge will be useful in? Maybe I'm slow, but I don't get it. Was it about asking for help and not getting any? I long for the overarching insight others report having gained from their situations, mine has been isolating and diminishing and I'm just hurt and bewildered. I ignore the pain until I can't or sometimes --- when I don't get much done for days and wonder why, then I remind myself that I'm pushing through a fog of pain, and sliding half of an unresponsive self in and out of bed. The worst question I get is does it hurt or how does it feel like, because then i focus on it and realize that i had dialed it down to a dull hum. or low static, and focusing on it, sharpens it. I play the game of --if just one leg could move, then i could get in and out of cars, and if i could just stand -- not even walk, just stand, then i could travel-- because then i could use bathrooms other than the one at home with the special seat for me to transfer on to. And I play the game of if i had a million dollars -- i play that one a lot-- if i had a million dollars then i could get the exoskeleton -- there was a news item on TV about a woman who ran a marathon in her exoskeleton -- then i could walk downtown, walk to the store… ….. Glad you found a solution. My one pill solution for pain is naltrexone and other than that -- sleep. that all be well, Akua
Re: [TMIC] What hurts
My you be ever blessed, Kevin. Thank you as always for sharing. I'm so glad to read that AT LAST you have a good aide. I remember some of the issues you had with help. I was similarly told that I would get more help if I went on Medicaid. And I was advised to get Medicaid buy-in which would cost an outrageous amount of money -- i don't remember the amount but at the time it was more than a mont's food and mortgage. YEs it would help me a lot to have an aide more than once a week for two hours… I asked for more time but was refused --- I don't have enough for the full rate -- $25/hour. I appreciate your calming tone. Thank you! I'll just cry tonight and be better in the morning. That all be well, Akua On Apr 2, 2012, at 12:28 PM, Kevin Wolfthal wrote: Akua, I live in a big city. Even though there are some organizations that help the disabled, it seems the big push from social workers and even nurses, is that I should go on medicaid in order to get the most services. My Parents, (gone now), and I, worked hard for many years to have a little security and comfort. Going on Medicaid means divesting all of ones assets but for the bare minimum, and having the state own your soul. No thank you! So I own my own condo that I inherited, but I live in a building that offers the bare minimum of access, and the workers are hostile to me. I struggle to make ends meet on SSDI. I even received an anonymous handwritten threatening message a few months ago, which I have discussed with the police. Nothing they can do right now. My saving grace is my aide who cooks, cleans and shops for me 4 days a week. I would move to a more accessible and friendly place if I was not so physically depleted and could afford it. You are not alone in having to make the best of a difficult situation. There is no guarantee of sensitivity even from other disabled folks, though we hope that those in similar circumstances have more understanding, it's not always the case. This group has given more support than most I've found, but misunderstandings happen, as in most relationships. Hoping you find answers and help for your needs. Kevin a...@artfarm.com wrote: What hurts, Bernie, is the *Victim-blaming* implicit in the question why do you stay and whole passive agressive if you don't like it just go somewhere else it *pushes a button* in me, of other causes and other efforts where, when one protests ill treatment, one is told *to pack up and go* And the sad, bad part is EVEN IF I WANTED TO I CAn't but the worst part is, i*f i could, i would but if i could, then i wouldn't* *want or have to...* * * *if i could marshall the resources to move, i could marshall the resources* *to make it better, to fix it…* * * but that doesn't even get to the why should i be the one to leave my home that i worked so hard to get and give up my little yard and the trees i planted and all my tools and equipment? * * * * * *
Re: [TMIC] Blown Away
Pat Cooley wrote: I completely agree. Lack of money and the fact that you are dependent on other people is what makes it impossible to make changes in your life. Thanks Patti! Glad you were able to make the change.
Re: [TMIC] Blown Away
Thanks Kevin, I guess my mistake is the assumption that being disabled made folks more sensitive and more informed. Akua On Apr 1, 2012, at 7:15 AM, kevin weilacher wrote: Akua, If those resources don't exist, then a person is unfortunately confined to trying to make the best of what they have. Seems that there is some ignorance from within the disabled community against others that are disabled, as there is some ignorance from those that aren't disabled, against those of us that are. (ie: I hear the comment all the time..it's in your heador, if you exercised more you would get better)
Re: [TMIC] Blown Away
This reads like a poem, Dalton!!! You give the picture images that encapsulate the facts. Throughout my many discussions and meetings on the transportation issue here, I like to pull out as to how the suicide rate here is higher than in New York City… No one has to think about the disabled because they don't see the disabled and they like it like that. I've already lived through various folks' awakenings as their aged parents or mentally challenged kids need to get around somewhere or do something and they can't. And the person can't always be the chauffeur… then i get the note or the call…. Or as the annoyingly chipper woman did, failing to find a solution, just quit her job as the mobility manager. She had been, as some here have, insulting about my perspective on the obstacles and barriers. (she'd been hired to get organizations to pool their resources and create a paratransit solution). I never knew teen suicide was an issue until i moved here, when one spring in the bucolic hills, 5 kids killed themselves…. and these were the middle class, the better off, the able bodied. It is that lack of empathy or understanding that kills. Thanks so much for the affirmation! Akua On Apr 1, 2012, at 6:44 AM, Dalton Garis wrote: There is a vast, vast difference living in the well-off countryside, the bucolic countryside, of beautiful sunsets and fond remembrances … and living in the poor countryside, stuck in a country where white bread wrappers blow in the wind and get snagged by low branches; And where used pampers litter the yards and old appliances are thrown down the hill behind the houses; And where no one has their own teeth after age 37; And where the only books for sale are Harlequin novels; And where women wear facial bruises on Monday's; And where you need three cars, so that one might start; And where seeing a doctor means bringing some trinket he might want in exchange for services rendered; And where the man of the house spends all his money on chroming his truck, while his wife and kids live in a trailer; And where the downtown has been gutted, borded-up and Wal-Marted. And where Monday mornings in March see the most suicides. That countryside is the daily reality of the country's poor. That countryside is rarely referenced or discussed. As a sawmill and woods worker in Maine, Vermont, Massachusetts, Montana, Colorado, New Mexico and Washington State, I knew that countryside well. Being a part of that countryside is disability enough. That countryside is a bad place to be if you are even more disabled. Dalton From: a...@artfarm.com Date: Sat, 31 Mar 2012 21:41:37 -0400 To: tmic-list@eskimo.com Subject: [TMIC] Blown Away Resent-From: tmic-list@eskimo.com Resent-Date: Sat, 31 Mar 2012 18:45:43 -0700 i'm dumbstruck at the question why do I stay coming from this group. I am paralyzed -- i would think folks here at least might understand what having a disability thrust on them late in life would mean. Or maybe i just didn't know that there were services that buy one's home, pack one up, and relocates them to more congenial and supportive communities. I never found such, but it could just be the limits of my imagination. Or maybe i'm the only person here without the money to just buy myself the solutions i need. I am obviously wrong on many counts.
[TMIC] What hurts
What hurts, Bernie, is the Victim-blaming implicit in the question why do you stay and whole passive agressive if you don't like it just go somewhere else it pushes a button in me, of other causes and other efforts where, when one protests ill treatment, one is told to pack up and go And the sad, bad part is EVEN IF I WANTED TO I CAn't but the worst part is, if i could, i would but if i could, then i wouldn't want or have to... if i could marshall the resources to move, i could marshall the resources to make it better, to fix it… but that doesn't even get to the why should i be the one to leave my home that i worked so hard to get and give up my little yard and the trees i planted and all my tools and equipment?
[TMIC] National Poetry Month
Last month was national crochet month and I exhausted myself making something every day. This components will go into two new artworks -- a trytich called Love Is and another piece called Priestess. This month is National Poetry Month and I'm following a blog that offers daily prompts. Dalton's poignant evocation and this painful discussion led to this first draft -- the form is called a triolet (tree- o -lay). I did a quick google to make sure i wan't exaggerating. Steuben Count's suicie rate is 11.1 per 100,000 New York State as a whole is only 6.2 per 100, 000 Triolet for Today One year there were five suicides Deer guns turned on mammal heads How poor this pretty countryside One year there were five suicides All these wild flowers don’t bloom inside so needful kids felt better off dead One year there were five suicides Deer guns turned on mammal heads
[TMIC] Blown Away
i'm dumbstruck at the question why do I stay coming from this group. I am paralyzed -- i would think folks here at least might understand what having a disability thrust on them late in life would mean. Or maybe i just didn't know that there were services that buy one's home, pack one up, and relocates them to more congenial and supportive communities. I never found such, but it could just be the limits of my imagination. Or maybe i'm the only person here without the money to just buy myself the solutions i need. I am obviously wrong on many counts.
[TMIC] Re: tmic-digest Digest V2012 #119
From: Dalton Garis malugss...@gmail.com Subject: Re: [TMIC] No mail Date: March 29, 2012 12:28:39 AM EDT To: Janice Nichols jan...@centurytel.net, James Berg molokai...@gmail.com, transverse myelitis tmic-list@eskimo.com Like, for instance, Where Akua lives? D. I'm S glad you're the one who said that Thanks for listening and remembering the many small town horror stories I've shared. There's no infrastructure here, there is no grocery delivery, there is no accommodation. My city rep berated me for expecting the city to pick up recycling weekly for free. I was paying $25 a month for garbage pick up, in addition to paying for other people's children to be educated through my ever increasing property taxes. When i was in the nursing home, my car, in my private driveway was spotted without license plates, which i had friends take off the car to save $, and ticketed. It was visible because i only have a carport, not a garage. So for five years i've had to pay for car i can't drive. I must a maintain the sidewalk that i don't own, the grass that i cannot have a handicapped parking sign in front of, so i can get in and out of my house on those far occasions when i pay $60 to go 1 mile to the doctors!!! This is a small town -- 10,842 people. This the HQ of an old Fortune 500 company the median age is 37.5. I miss bagels and lox, hammantaschen, sfogiatelle, falafels, real sushi, rugelach…. YEs, everyone was friendly when i was able bodied, but there are incursions, and insults and indifference from all and sundry since i've been paralyzed. Win the lottery Dalton -buy a ticket, just one and think of me and when you win, just one of your 392 millions will enable me to walk again and be free.
[TMIC] Participation
Employment -- I was fired because of my disability….I was doing marketing and development. Then I taught, did readings and workshops but since returning home, I can do none of those things because there is no transportation. So I've turned to designing. I posted on Betterfly and now have a private student who comes to my home. So those of you who can work are lucky to have situations that make that possible. In my part of the world it's not only about *willingness* it is about access. In terms of my art making, I haven't entered work in any shows because I never get to see it/them --- for the five show I've been in since returning home, not once has anyone taken any pictures of the shows or my work on the walls. It's heartbreaking.
[TMIC] Dalton
Hi Dalton, please tell my home town i miss it terribly and wish i could visit! I'm glad you're home, though i wish you could move around the mega town with assurance of incident free explorations. The warm weather reminds me of my spring ferry rides and seeing the blooms in Central Park on the way to the zoo, or taking my mother to the Russian Tea Room. So glad to hear form you! Ad you made me laugh with that evocation of upstate! Wishing you healing, Akua
[TMIC] Participation
Hi Pam, I used to work in hot and warm glass ( sand casting and kiln forming) and paper. I'm a hand papermaker. I also work in fiber, mostly crochet as Without the use of my legs, I can't operate my floor loom. If you google me, I'm sure some images will pop up. I'm also an award-winning poet and writer ( why do people say that? i guess to suggest that i write fiction and nonfiction as well as poetry) http://www.artfarm.com/mainroom2.jpg http://www.artfarm.com/papshieldonwall.jpg http://www.artfarm.com/papshieldonwall.jpg http://www.artfarm.com/glass.html http://www.freeformcrochet.com/2010/Pages/Akua.html http://www.freeformcrochet.com/2011/Pages/Akua.html
[TMIC] Re: tmic-digest Digest V2012 #91
On Feb 17, 2012, at 10:40 PM, tmic-digest-requ...@eskimo.com wrote: what do i do Wishing you the best, Candy. ™ does not turn into anything… there is no prescribed route for it. I am alarmed that you are prescribed steroids continuously --- the jury is out as to its efficacy as an intervention and I hadn't heard of it prescribed continuously. Sounds like you need may need some second and third opinions. When I was first in the hospital I made a list of the recommended drugs, looked each up got print outs and did a spread sheet of effect and side effects. My recent tests included a CT scan, lung capacity and bone density. My bone density has diminished from my paralysis and (perhaps) steroid use. My vitamin regimen includes calcium, D, Folic acid, iron to remediate the losses due to ™. Hopefully you've had a blood screen -- became anemic as a result of this condition. Just a few thoughts…. ™ left me paralyzed and in pain, BUT my pain once an 8 is now about a 3 and i only take one drug for ™ -- low dose naltrexone. That all be well, Akua
[TMIC] Re: February Birthday(and a little extra)
Love this , John! Fuel for the little grey cells, grist for the mind mill! Thank you! I never knew any of this, and I deeply appreciate learning new things. Akua
Re: [TMIC] has anyone ever heard of Percutaneous Discectomy for a Herniated Disc?
Risks During a percutaneous discectomy, the surgeon has no way of seeing the herniated disc or the compressed nerve root. The surgery might not remove the herniated disc. So there is no guarantee that pressure on the nerve will improve. There are risks with anesthesia. What To Think About Many experts consider percutaneous discectomy to be a poor alternative to standard discectomy or microdiscectomy procedures. Why are you considering this? In terms of TM -- this would do nothing. An ex had multiple back surgeries including a discectomy -- I don't remember what kind... he went to an experimental place in the Bay area but his problems were markedly different from what I have with TM.my pain is not back pain except when i wrench my back or arm or shoulder lugging the unmoving half of my body.. Guys, I am actually at the point where I want to try anything. Please let me know if you ever heard of this and what you think. I found this link on the net after I saw an ad in my local paper today. Regards, Jeron http://www.webmd.com/back-pain/percutaneous-discectomy-for-a-herniated-disc --
Re: [TMIC] Extent of your TM? Pins and Needles
I feel you, Dalton. I was fired for reasons never clearly articulated, but my boss didn't like looking at me in a wheelchair. Performance? Well as I had raised unparalleled amounts of money, written and won several grants for the organization despite my horrific disability, it was less about results and more about looks. My colleagues protested to no avail -- they suggested what i had only thought in passing -- why couldn't I work from home ( in quotes because i was in an apartment in that city that was not home). As my work was marketing and development, TM only made me unable to run around. I was in a city that had, as I now know, fabulous paratransit infrastructure -- on demand public transport for 20 hours a day, seven days a week and multiple private services -- so unlike my situation at home , now, I could get to work, to meetings, was able to teach workshops and perform. But I could no longer run out and buy paper for the printer or clean up after events or take a prospective donor out for drinks. So while I blame TM, if my employer had been enlightened, I would still be working. And if my city, or county were enlightened, I would be working again. Alas, there is no paratransit, no delivery services and no sweetness or assistance here. Akua --
RE: [TMIC] RE Pins and Needles
I can only wear one kind of pants, all cotton knit, so of course I have many colors of same pants. I feel kind of funny wearing the same pants to work all the time. The winters are hell as these pants are not thick or warm. As a New Yorker, my favorite color for work is black, so that didn't bother me as I already had a bunch of black cotton knit pants for dressy casual that became work wear when i got TM. Mine are different weights -- there are heavy weight cotton as well as light weight. Eddie Bauer, J.Jill, LL Bean --
Re: [TMIC] Medical Alert Buttons
Any advice regarding these gadgets. Thanks! i had one until i fell getting off the toilet and dragged my body into the bedroom, as I can't crawl, got dressed, pulling clothes off the bed and rolling on the floor and use my reacher to grab my cell phone and then the fire department came and put me back in my wheelchair. For some reason in my panic, i didn't think to press the button around my neck. Still that wasn't the only reason i stopped using it -- Phillips charged me $30/month and a local service was $18 so I called Phillips and asked them to give me a break in price. They said they would, but didn't so I dropped them. Now I just try to be sure that my celphone l is charged and that my landline stays plugged in. --
[TMIC] OT:Vote Today to Help AARDA Win $30,000 for Autoimmune Disease Awareness
Bulletin from the cause: 50+ Autoimmune Diseases -- Fund Research for Crohn's, Lupus, MS, Diabetes, Arthritis and more (NEW) http://links.causes.com/s/clzsRs Vote Today to Help AARDA Win $30,000 for Autoimmune Disease Awareness Help AARDA Win $30,000 to Increase Autoimmune Disease Awareness The San Jose Group, a national public relations and creative marketing firm is celebrating their corporate 30th anniversary by giving away $30,000 in services. We need your help to ensure that AARDA wins this prize so that we can utilize these services for autoimmune disease awareness. Here's how you can help: 1. Click the following link: http://links.causes.com/s/clzsRx. 2. Click the vote tab below the program description. 3. Click on American Autoimmune Related Diseases Association! Today is the last day to vote - so please take a moment and support autoimmune disease awareness today! Thank You, The Team at AARDA --
Re: [TMIC] New MRI results
Dear Janet, Sorry to read of the increased discomfort. The term and the condition are new to me and as you've doubtless done an internet search, there's nothing I could add. Sending my well wishes, for comfort and healing. Akua --
Re: [TMIC] New MRI results
had one Dr who told me that she never had much time for extra study and for me to search and whatever I found that we had not tried that she would support me in it. well she had opportunity in another place that was better for her so she moved on. This just happened to me! My primary is gone -- seems like every time i educate one they leave!!! This is my 4th one in five years since getting TM!!! ARGH. I still have my physiatrist -- but my meds were prescribed my now gone primary and Really I so so so don't want to meet yet another idiot and tell my story and be charming to get them to not hurt me. (sob) --
Re: [TMIC] Losing my mind!
I'm not sure I understand. I get one packet -- a digest -- that bundles emails -- every day or less. Today's digest included Robert and Dalton. So there is no need to ever get 100 e-mails as both yahoo and list-serves offer the DIGEST option which both bundles emails and enables you to scan the subject of those emails. Akua --
Re: [TMIC] New to T/M mail list
Hi Ryota! I wanted to welcome you to the group. When you mentioned Christchurch, my interest was piqued. Just a week or so agao there was a travel show on NZ and they spent time showing the architecture boating on a waterway in Christchurch. How lovely it was!I have a friend I've never met, who lives there. (I'm a hand papermaker and he designed my hollanders). When the earthquakes came, I cried and prayed for this wonderful man and his family. The devastation was horrifyingly sad, so my condolences to you and congratulations -- for surviving and for what you endured. I have my own post traumatic stress from the events and the loss surrounding the onset of my TM -- so I urge to not neglect addressing just the sheer emotional/psychic weight of the trauma of the earthquake on top of your TM. I'm sure on of our professors will chime in about the challenges of lecturing. Wishing us all strength and healing, Akua --
Re: [TMIC] Re: Brain lock ?
Meditation: Try it again. Don't concentrate. Just breathe deeply, slowly in as quiet a place as you can find. Deep breathing has helped me manage pain. Akua who is paralyzed and in constant pain i reckon i traded meditation for medication,, sort of kills dedication and quickens procrastination on and on i ramble From: bobberino elbobber...@earthlink.net To: fr...@franksheldon.com; Dalton Garis malugss...@gmail.com; celr...@aol.com; TMIC-LIST@eskimo.com Sent: Monday, November 28, 2011 7:52 PM Subject: Re: [TMIC] Re: Brain lock ? Danggit..!!!I wish I could get my brain to slow down always going at fool speeed;) My brain is spinning so fast I offen forget what am doing, so engrossed on whatever spin da brain is doing. oh well I've tried meditation but I can't concentrate on that neither. BobbyJim in colder Elvisland --
[TMIC] Geron Halts Trial Because of No Money
Another option bits the dust. http://topnews.us/content/244764-lack-funds-halting-embryonic-stem-cells-trail Now on 10/20 they announced progress in the trials This is the stuff that worked on rats GRNOPC1 contains hESC-derived oligodendrocyte progenitor cells that have demonstrated remyelinating, nerve growth stimulating and angiogenic properties leading to restoration of function in rodent models of acute spinal cord injury. Preclinical studies have shown that administration of GRNOPC1 significantly improved locomotor activity and kinematic scores of rodents with spinal cord injuries when injected seven days after the injury. Histological examination of the injured spinal cords treated with GRNOPC1 showed improved axon survival and extensive remyelination surrounding the rodent axons. For more information about GRNOPC1, visit www.geron.com/GRNOPC1Trial. For further information about the Phase 1 clinical trial, including location of clinical sites, visit www.clinicaltrials.gov/ct2/show/NCT01217008. (sniff) --
Re: [TMIC] Geron Halts Trial Because of No Money
ROFLOL!!! if only i were the rat they say i am From: Akua a...@artfarm.com To: tmic-list@eskimo.com Sent: Monday, November 28, 2011 4:56 PM Subject: [TMIC] Geron Halts Trial Because of No Money Another option bits the dust. http://topnews.us/content/244764-lack-funds-halting-embryonic-stem-cells-trail Now on 10/20 they announced progress in the trials This is the stuff that worked on rats GRNOPC1 contains hESC-derived oligodendrocyte progenitor cells that have demonstrated remyelinating, nerve growth stimulating and angiogenic properties leading to restoration of function in rodent models of acute spinal cord injury. Preclinical studies have shown that administration of GRNOPC1 significantly improved locomotor activity and kinematic scores of rodents with spinal cord injuries when injected seven days after the injury. Histological examination of the injured spinal cords treated with GRNOPC1 showed improved axon survival and extensive remyelination surrounding the rodent axons. For more information about GRNOPC1, visit http://www.geron.com/GRNOPC1Trialwww.geron.com/GRNOPC1Trial. For further information about the Phase 1 clinical trial, including location of clinical sites, visit www.clinicaltrials.gov/ct2/show/NCT01217008. (sniff) -- --
Re: [TMIC] OT: The Bed Story
... I've been trying to get a hospital bed with a trapeze for transferring, as my shoulders that have been my legs for moving for the last 20 years are worn out. It would be so much easier to grab the bar and swing into bed than to have to hooch and schooch my body until I get into position for the night. But since I can use my ARMS, I do not qualify from what I've been told! If I couldn't use my arms, why would I need a trapeze? It just gets crazier and crazier to try and get anything medically necessary these days with politics and the economy as it is, (unless you have private insurance, not Medicare) ... Thanks for chiming in, Bernie! Between your neurologist, a physiatrist, and an OT they should be able to help make your case for Medicare. I know it's not easy -- I've been working on getting a motorized wheelchair for a couple of years -- for the very reason you cite -- my shoulders are getting worn and they hurt from wheeling and transferring myself around. I named the specialists/experts who have had to write letters and fill out the forms to move my request along. Best to you and yours, Akua --
[TMIC] OT: Getting out of bed Trapeze
Bernie -- don't know if this will help but I found a trapeze for $123 http://www.medicalsupplydepot.com/Assistive-Furniture_3/Bed-Accessories_2/Invacare-Corporation-Fixed-Offset-Trapeze-Bar-SP.html Wishing us all healing, Akua --
[TMIC] OT: The Bed Story
My Bed was stuck on high. it was the wee hours of the morning and i couldn't get in. I spent an hour or so, looking for the manual crank, moving the piles of tools and project bags around my bed. Then the dressers and at long last, I found the crank, but weary from all the moving and rearranging, I was fading. The buttons didn't respond. For months, if I held the cord a certain way, I could get it to move up down, lift my head or legs, now, no longer. I gave up on trying the crank at the head of the bed, then i tried the foot. It's a fitted tube that goes over an inset piece... and it kept popping out. There some positioning but finally I cranked the bed down, my shoulder ached. On awakening, just to see I pushed the buttons and they worked! But that night, Sunday, returning to bed, I had to hand crank it down again as the down didn't respond, only the up did. So what to do? I was proud that it took me just one minute to find the Invoice for my bed from 5.5 years ago. I needed it because after looking on line for information I needed more than the name of my bed -- I needed a model number and serial number. There was none on the invoice-- the letters and numbers on the invoice didn't correspond to anything on the Invacare site, and I was unable to crawl under the bed to find anything. But perhaps Invacare could help anyway--- the thing that wasn't working was called the IVC pendant. It's a part and it seems on some models, it's removable. When my aide came, I had her look under the bed and we could see where the pendant entered the motor, but a couple of cautious tugs did not remove it. Invacare has a help/ answer site, that charges money -- that varies with the urgency of your need, for the answer. When i refused to pay, then a screen popped up, offering me the answer, but in a day. ( Two weeks later, I still haven't heard from them). I called the firm that got me the bed. They told me that I could get the bed replaced within five years -- of course this is 5.5 years, right on time, to not be able to get free help. A lovely person there said that she would contact her supervisor to see if they could find my patient sheet to get information on the bed model and serial number, they would have to go through paperfiles-- which they might not have any longer as this information was not in the computerized records. YEah we'ret alking back in 2006, they hadn't bothered to note the model number or serial number of the bed. I called the medical supply arm of my clinic who said they didn't know whether or not they did that kind of thing, and it took four days for me to find out if it's even the kind of repair they do i hate when i have to ask whether i can ask the question. So then I had the idea of asking those who have electric beds. I called the closest hospital who said they do it in-house and named different manufacturers than mine. Then closest nursing home who said the same thing. The next closest nursing home told me to call tomorrow to talk to maintenance -- their day was over. Over? I was talking to them at 3:30. Turns out their day ended at 3 p.m. (YIKES! poor residents, no wonder the place only had one star out of five in their ratings) I called an electrician firm from the yellow pages -- I asked if they gave free estimates. The phone answerer didn't know if they did ( their ad said they did, but my strategy for first contact is to confirm simple information) and said she would have them call me tomorrow (This was at 3 or so and they were already gone). BTW, they never called back. I write this latest sorry saga this as a kind of reminder and rebuke, for all the you need to advocate for yourself blather , to offer up my thanks for still having my mind, but my fervent wish to not have to use it or my energy in this way, my wish to walk again, so I could work on stopping the tar sands disruption, stopping the threat to our watershed that frackking poses, writing something interesting. I asked everyone local if they knew of any electricians, explaining that my bed wasn't working. Maybe they still don't understand what paralysis means and how being able to get in and out of bed without inordinate difficulty would be a nice thing, especially as I live alone. But only one friend responded within 24 hours another lesson for me in who I cannot count on. The universe heard my silent cries of anguish. When I was finally able to speak to the woman designated as the one who would know if the medical supply firm might even undertake repair she said maybe but needed the information I had been unable to find or get -- the model and serial number. She had a truck in the area she said and could be there shortly. Yes -- No -- I was stuck in bed and it would take me a least a half hour to wriggle /slide out and into my chair. When the truck arrived, I explained to the wonderful woman that it was the pendant that wasn't working
Re: [TMIC] OT I'm Home!!
So glad you weathered this storm! And love the blessing in disguise All praises! Akua Hi Everyone, I just got home a few minutes ago. Boy it's great to be here! Had to throw out some food,but all in all not too much loss. Mitzi is walking around meowing and sniffing everything. The power box coming down was a true blessing;electrician said the circuit breakers were so bad they could have caused a fire. The house is 43 yrs old. I've had the circuit breakers replaced when needed over the years. Just want to thank everyone for the nice letters sent. Now I'm off to do some laundry. Cheryl --
[TMIC] Ella's Address
I just sent Ella a Happy Birthday note and got a spam reply. She must have a new address or her email has been hacked. Akua --
Re: [TMIC] OT
It's been frigid here for awhile in the Southern Finger Lakes. My wise catalpa-- the last to get leaves in the spring and the last to shed leaves was still green yesterday. Overnight, it dropped all but four of its grand, heart shaped leaves, which now pool around the trunk . The Acer Maple, also young and younger than the catalpa, dropped its bright yellow leaves last night too. For the past several weeks I've been in a flurry of designing, writing and making -- masks and patterns for them. I finished my third pattern yesterday which I'm calling the Song Bird Mask. The first is the Akua Bird Mask and the second, the Phoenix Bird Mask. I was saddened to find that I am again at the edge of viability in terms of technology. I had figured out several work-arounds to create a 728 by 90 pixel ad for the the first mask pattern. The sun still shone, at the beginning of the month when I was taking pictures, so I had some clear shots and I aimed to have the inexpensive ad run to a targeted audience for a mere $5. However the last step, translating from a pdf to a jpg, left the images slightly blurry. And no matter how high the initial resolution, after sizing them down to 90 and then going from word to pdf, pdf to jpg, the final translation blurred the pix. So this has been very depressing. When i can stay in the flow, I can ignore the constant pain, and the annoyance of not being able to move because my legs fly off the foot rests. More than once lately, I've twisted my foot or ankle, only realizing that it was to the side or behind when i couldn't roll any further. And the cold dark makes me tired, I'm up until 6,7,8 am then sleep until 2 or 3 which makes it hard to get much done because this is an area where social services close at 3. Help:my once a week aid forgot to get the cat treats. How could this be, when I give her a computer printed list, with tick boxes, item location and prices? I haven't bought the cat anything for months and it was his birthday last Tuesday and she for the 97 cent bag of treats for him. And she offered to go back and get it and I said there wasn't time. I only have her for two hours and I needed help, putting the recycling out, modeling a prototype,getting the last roll of paper towels off the high shelf where I tossed it. It would help to have help, but I can't afford it, and it would be great to get sales, but I barely have the tools -- and if I had more money, would I get help, or buy a new computer with an OS than can run some of the new free programs, or would I just buy more protein so I can fix my anemia? Yeah. BOO! Akua HAPPY HALLOWEEN EVERYONE!!! JANE/SPLENDORA TX --
Re: [TMIC] Neurology Now on TM
was glad to see the articlebut kind of bummed that they chose to do the article the way they did... My sentiments exactly! And thanks Kevin for your efforts on our behalf! And on that subject, a shoutout to Jim -- for making such connections possible. --
[TMIC] Neurology Now on TM
Neurology Now ( free sub) has an article on TM in its Oct/Nov 2011 issue focusing on Allen Rucker. Kevin Sorbo is on the cover. I was glad to see the coverage! I was surprised at the picture of Rucker. I've told my friends who send me vids about a tell , that I use to assess whether the person is in the same state as I am: crossed legs. I can't move my legs, I am paralyzed, I tell them. So when tehy asks why or whether I can do such and such I point out to them that the guy who just got out the car from his wheel chair crossed his legs at the ankle, for example. My legs splay, flop and gap and my feet don't always stay on the foot rests. Which makes for danger if i don't notice, as more than once, I've rolled on with an ankle stuck in a doorway. So it was a bit disconcerting to see this guy with his legs crossed, thigh over thigh, like a walker, posed in his wheelchair. That's a thousand percent more motion and control than I have. --
Re: [TMIC] shingles vaccine
after they asked me about the flu shot, they asked me about bug bites. I did a lot of tromping around, gathering weeds for papermaking and gardening before TM struck, A Lyme sufferer told me theat most Lyme goes undiagnosed and unrecognized and suggested that my idiopathic TM might be Lyme's. Akua Wells Fargo took care of the compensation where I worked and they told me i could have gotten it from a bug bite. I should have gotten a lawyer but in our shape especially in the first months who is able mentally to fight bureaucratic systems. idiopathic = scape goat From: Dalton Garis malugss...@gmail.com To: lynne myers lynnemye...@yahoo.com; tmic tmic-list@eskimo.com Sent: Thursday, October 20, 2011 9:55 AM Subject: Re: [TMIC] shingles vaccine I also have idiopathic TM, which means, I suppose, that it I a pathogen of which the doctors are idiots. --
Re: [TMIC] shingles vaccine
AGreed! And my TM struck twice -- I walked away the first time after a long weekend in the hospital and the second time -- a month later -- i was knocked down. I suspect that the steroids left me open to greater attack from the unidentified underlying cause. I had a very, very mild case of TM but it persisted. Stupidly I did not go to the doctor immediately but waited for weeks and weeks. I was asked the same questions...vaccines, bug bites...this was before I was actually diagnosed with TM. I was also rather surprised that my neurologist actually asked me if it was possible that someone could be poisoning me. That was a bit freaky to be asked that. Ultimately it was concluded that mine was also idiopathic. The months prior to my coming down with it I suffered a long bout of Bronchitis, followed by a miscarriage which was followed by a tooth problem that I ended up getting a root canal on. Who knows if any of that contributed to it. Anyway, as far as a shingles vaccine? I personally would not get one. I never get the flu shot either or the pneumonia. No thanks. That being said, I would really, really hate to come down with Shingles. Yikes! On Fri, Oct 21, 2011 at 11:21 PM, Akua mailto:a...@artfarm.coma...@artfarm.com wrote: after they asked me about the flu shot, they asked me about bug bites. I did a lot of tromping around, gathering weeds for papermaking and gardening before TM struck, A Lyme sufferer told me theat most Lyme goes undiagnosed and unrecognized and suggested that my idiopathic TM might be Lyme's. Akua --
Re: [TMIC] Does anyone know?
When I was in hospital with Tm 6 years ago the first question everyone asked was whether I had a flu shot. They thought that that may have been the cause of my TM. I did not have the shot however. I was in rehab for at least 6 mos. and every nurse I met said they would never take the shot regardless of what the doctors say. I had the EXACT same experience! Akua --
Re: [TMIC] How can a spouse help?
It helps to be heard, so perhaps a support group would be helpful. I found the most comfort from people who said it's horrible, unfair and awful vs. those who inanely suggested that I cheer up, buck up, or for example sent me videos of limbless people dancing. I'm in a wheelchair and can't walk, and or move my legs -- but that doesn't mediate the utter insensitivity of so many, they don't know that on top of all this cann not, is a burning hell of pain, it HURTS constantly and unremittingly So it must be super hard for your husband with no external tell. Meditation has helped me, not even meditation to be honest, but reading about meditation and deep breathing. At onset, I could barely sleep for pain. I found pain relief in LDN -- low dose naltrexone. It's my only TM related drug and I'm very grateful for it. You're in the UK a place that I think has better and more thorough health care than has been my experience. Physical therapy, when I've gotten it, has been helpful. Acupuncture relieved pain. If i could walk, I would go swimming five times a week, I would sauna and hot tub/whirlpool -- a therapy inaccessible to me. Neuromuscular stimulation may help. Magnets may help. I think oxygen would help me, but I've yet to convince any physician to order it for me. You husband is fortunate to have a partner and family that cares. I don't. OTOH, I can imagine the daily rub of living with others who have your old self thier mind and expectations, expectations that you can no longer meet. So there is a daily psychological pain in disappointing others -- that's the only thing my aloneness spares me. I commend you for caring and reaching out on his behalf. May we all heal and be well. Akua --
RE: [TMIC] Pyrrhic Victory?
I've written the governor before and after he was elected, as well as every relevant legislator from congress to county. I've shared here the stories of asking scout troops for someone to shovel my sidewalks of snow-- for pay! and not getting any response. I also reported previously rolling past a parking lot full of buses with lifts -- for Pathways. I asked them if they would assist but as I'm not DD, they wouldn't. They and another local provider said they couldn't help me because of insurance. So then i called United Way and began to explore the idea of United Way undertaking the difference in insurance so that these existing, capitalized, nonprofits, might offer paratransit and the occasional support services. That got nowhere, which is what led to my now two year struggle to start the nonprofit the struggle is not in the administrivia, but in finding local people to serve on the board, at least long enough for me to file the papers but that's another story. The only untried suggestion and contact is HS guidance counselors. Though at the moment I'm a bit tapped out on cold calling and begging to get something I'll have to pay for. Looking through the human services stuff, it seems a lot of stuff is geared towards developmental disability, deafness, blindness, and homelessness. For people who become disabled, most of the resources are geared toward putting them back to work. Or helping them focus on being independent on their own. I'm not finding a lot of exceptions for folks who can't become independent with their disability. What makes the difference in a quad or para and a child who was born with CP? I'm not sure I get it. Does the governor have ombudsmen? This seems to be an oversight. --
RE: [TMIC] Pyrrhic Victory?
Thanks Pam! But I've figured out how to vaccum in my manual wheelchair. I bought an electrolux -- a cordless stick or hand held with a recharger stand. Between that and my swiffer, and my dustpan on a stick, my floors are cleaner than they've ever been, nothing is on the floor, because i may roll over it.-- but dusting and high surfaces -- that's where i need help. No kidding! Akua; if I lived close by I would vacuum your floor. I can do that now. Pam --
Re: [TMIC] My son Chris OFF TOPIC
So very sorry to read this! My deepest condolences. May you be granted strength and comfort in this difficult time. Akua MY SON CHRIS DIED LAST NIGHT. HE WAS DIABETIC AND DID NOT TAKE CARE OF HIMSELF. HE WAS 36 YEARS OLD. I DON'T KNOW HOW I WILL BE ABLE TO BURY HIM. THE LORD WILL MAKE A WAY SOMEHOW. MY SECOND DAUGHTER PAM DIED LAST DEC 1, 2010. SORRY I JUST NEED TO EXPRESS MYSELF JANE/SPLENDORA TX --
Re: [TMIC] spouting off
When I was in Rochester, I lived in a HUD apt building. (disabled 18+ or 55 +) Tehy did a rate adjustment based on my income -- I paid more. So perhaps such an apartment is available to you. One of the administrators told me I could get an income adjustment /assessment based on medical deductions. I got the doctor to write a letter naming all the things i used as medical necessities as a result of TM: wipes, caths, bags, etc. Thousands of dollars were deducted from my income I save all my receipts, grocery, pharmacy, from wherever stuff related to my condition is purchased. They add up. Re:Taxes: you can deduct for medical expenditures -- you should see a tax advisor. --
[TMIC] Pyrrhic Victory?
I have an aide come once a week for two hours. I would like more time and more help as those two hours are spent grocery shopping, so I get no help around the house. But I can't afford more. The Home Health Care agency charges $25 an hour for her and I was fortunate to be granted a subsidy from United Way, so I only have to pay half. But that's still $25 a week additional for groceries. They had a nurse come every six months. This I never understood, as she either harassed my aide and made me lose part of the precious two hours as she asked inane questions, or she came and asked me to show her my care plan. The last time the nurse was here in the spring, she insulted and threatened me. I swore she would not enter my house again and I wrote a letter about what occurred, but decided against sending it. Two weeks ago the nurse called me, and in her usual rude and cavalier way,left a message telling me told me she would be over the next day. I called and said would not be available. Then i called the agency and said that I did not want anymore dealings with this person and could they please find someone else to send. The head of the agency said they only had one person to do this. I said i didn't understand why this had to be done... why was a nurse necessary? I reminded her that i had used their services for 3 years now, that i was very happy with my aide, but was not going to voluntarily submit myself to insult and distress. The head went on to try to persuade me/dissuade me by telling me that their one other nurse covered another territory. To which i had nothing to say. This was their requirement and it made no sense to me. This week she called me and left a message saying call her. I really dislike messages that don't have information and when i returned the call-- 90 minutes later, she was to be out of the office for the next two days. I was directed to the second in command who said that i was going to be reclassified. Reclassified? I said i have one person, once a week, for two hours who goes shopping. Well i would be reclassified so that a nurse wouldn't have to come. I said nothing. Since getting TM i find it hard to follow illogic and agree with it. But on further reflection I think they got money that i didn't pay for having a nurse attributed to my account and perhaps United Way picked up the tab, to the tune of $75/hour and they were able to continue with this subtle fraud until I refused to have the nurse come harass me again. But that's 3 years of unnecessary nonservice and easy money for that firm. It's a dirty shame. I'm glad i didn't cave on this. Akua --
[TMIC] Cold Upstate
it's 40 degrees, all the apples are off the tree. I just did my tax prep which i send to my tax lady in nyc. It is still a shock to see how much I spend on infrastructure: catheters, wipes,powder, gloves, surgilube, etc. stuff that doesn'tfix or ease pain but is required for the day to day sigh. Akua Hi, I've had tm since 8/13/95 and have tight banding all the time. It does get even tighter during stressful times,and I almost can't breathe. It's been awful the past few months. It's the worst part of tm for me,along with the nerve pain. Cheryl in gloomy Easthampton,MA. --
Re: [TMIC] My anniversary
It's true when life gives us a hundred reasons to cry, we have to show life that we have a thousand reasons to smile Thank you I love this! It's true when life gives us a hundred reasons to cry, we have to show life that we have a thousand reasons to smile. Sometimes God pushes us to our limits (and I am feeling stretched), HE tests us beyond our endurance because HE has greater faith in us than we have in ourselves so I am going to continue to trust. Today marks 11 years since I slipped into a coma and awoke to a life forever changed but I am not bitter. I've met so many wonderful friends here on TMIC and thanks for always being here to answer a question or give a pick-me up. --
Re: [TMIC] OFF TOPIC; my cancer marker results
HOORAAYYY! Hi Everyone, Got my blood work results today. My CA2729 (a cancer marker) has gone from 112 down to 53.8 . The letrozole seems to be working! Thank you for the prayers,I really appreciate it. Cheryl --
Re: [TMIC] HUH?
My beautiful city! They mutilated it! I thought, and still do. Yes, Dalton. I'm a knickerbocker, New York City is my America, the place to which my grandparents, all four of them, emigrated to make a better life, the place I learned nearly everything I know. I was born in Manhattan so this is home in many ways. I lost a cousin I never met in the Towers. My father, now deceased, told us about him. My bff lives on park row, a couple of blocks away. My brother in law, a NYS trooper, worked on rescue at ground zero. Akua --
[TMIC] HUH?
I didn't think it was quiet -- one hunk of the America is burning. My region is underwater. It's been a time of external trial and terror here. After the tornado, last week , we were frightened by a mountain lion. It was where i used to walk, to go get plants for papermaking. I learned that there's a townhouse complex there--- and this hurt,too, that the strawberry field and sunflower field by the river is gone and I didn't get to see it go in the five years I've been unable to walk. Our region has been devastated by flood waters. So I've been glued to the pictures of disaster so close to where I am.I've beeen weeping for friends and places I know that are underwater. Binghamton was evacuated for the first time. So I don't know about the rest of you, but I've been trembling from near miss after near miss. And the rain has grown the weeds to 5 feet tall and I have no one to weed for me. Two friends said on FB that they would -- this was just grandstanding. Each visited with me for hours, talked my head off, ate, partied and said they were too t ired/unable to pull a single weed for me. It was an energy drain each time, especially as I had prepared myself to be outside and weed. BLEH! I pay for someone to mow, but he doesn't weed and my garden is obscured by huge ragweeds and golden rods. I spent the day on the phone calling for help and the only sympathetic person was the labor department guy who understood -- I have a small city plot -- he lives where I once lived, in more country and has an acre and told me that to get someone to mow once on his half acrwould cost him $150 and he doesn't know what he'll do when he is no longer able to care for his property himself he could get someone for me, but I would have to have a Tax id, pay SS, have an employee identification #. And he agreed that it was impossible to find a kid to work for $10 even with record unemployment and so suggested that I call the high school guidance counselor. My cat needs to go to the vet and the volunteer organization said they'll only help with service animals... so as ever, I need paratransit. Need paratransit. Need paratransit, so then i turn back to trying to start the nonprofit to get paratransit, because no one is helping. --
[TMIC] Testosterone Testosterone Replacement Therapy
HEALING THERAPIES NEWSLETTER This is the 56th newsletter© (~9,000+ registrants) associated with http://www.healingtherapies.info/www.healingtherapies.info, the purpose of which is to expand the healing spectrum of people with physical disabilities, especially spinal cord dysfunction. This newsletter specifically discusses testosterone and testosterone replacement therapy. Please support those who have made this newsletter possible. Specifically, consider subscribing to PN/Paraplegia News (subscribe 602-224-0500 or http://www.pn-magazine.com/www.pn-magazine.com), or donating to the Paralyzed Veterans of America's Education Foundation, whose support of diverse educational and training activities have benefited many with paralysis (http://www.pva.org/www.pva.org ). Check out Alternative Medicine and Spinal Cord Injury: Beyond the Banks of the Mainstream at http://www.demosmedpub.com/prod.aspx?prod_id=9781932603507http://www.demosmedpub.com/prod.aspx?prod_id=9781932603507 or Amazon.com. (rated 5 stars by readers). This is an instructive book for anyone, with or without disability. Learn more about divergent function-restoring therapies for spinal cord injury at http://www.sci-therapies.info/www.sci-therapies.info. TESTOSTERONE (Adapted from an article appearing in August 2011 PN Magazine) In recent newsletters, I've discussed the potential of two female-associated hormones, estrogen and progesterone, to be neuroprotective after spinal cord injury. Both inhibit a variety of neuron-damaging processes that occur after SCI and, by so doing, may limit neuronal tissue loss and preserve function. This newsletter will specifically provide an overview of testosterone and testosterone replacement therapy (TRT). Although viewed as the virilizing male hormone, women also produce small amounts of testosterone. The hormone is primarily produced by the testes in men and the ovaries and placenta in women. Small amounts are also produced by the adrenal glands. In men, testosterone promotes 1) the development of reproductive tissue, sex organs, and secondary sexual characteristics such as body hair and voice deepening (i.e., androgenic role); and 2) sexual function, growth of muscle mass and strength, and bone density (i.e., anabolic influence). The second benefit also makes testosterone important in women. Testosterone Production Testosterone is synthesized from cholesterol, which is an essential biochemical building block for many hormones and nervous-system molecules. Its production is regulated by the hypothalamic-pituitary-testicular axis, a tongue-tying description for a regulatory, feedback loop used by our bodies to attain hormonal balance. Briefly, the hypothalamus, a region of the brain located above the brain stem, regulates the release of key hormones by the nearby pituitary gland, which then stimulates testicular cells to produce testosterone. However, as testicular production increases, the elevated testosterone levels start shutting off the brain's release of testosterone-stimulating molecules. As a result, testosterone output decreases (figure). Because testosterone synthesis is central-nervous-system-driven process, a major CNS disruption like SCI can affect testosterone levels. Carried via the bloodstream, the testicular-synthesized testosterone (or its derivatives) reaches the target tissue, such as muscle, bone, sex organs, kidney, liver, and brain. It is then transported into the cells and interacts with the DNA of specific genes. This interaction cranks-up gene expression and, in turn, the tissue products resulting from that expression - e.g., more muscle, etc. As a simple analogy, it's like speeding up a manufacturing assembly line. Testosterone Levels Normal testosterone blood levels range from about 300-1,000 and 25-90 nanograms per deciliter in men and women, respectively (nanogram is one-billionth of gram (~28 grams/ounce); deciliter is one-tenth of liter). Only about two percent of the body's testosterone is biologically active free testosterone. The remaining testosterone is either 1) bound to albumin, a carrier protein in the blood plasma (yet still bioavailable), or 2) complexed with sex hormone binding globulin (SHBG) (no longer bioavailable). To give a better idea of one's true testosterone status, laboratory assessments should measure both total and free testosterone. Low testosterone levels are referred to as hypogonadism, a condition associated with osteoporosis (loss of bone density), decreased lean body mass (i.e., more fat), less strength, reduced mental acuity and focus, mood changes, fatigue, less sexual desire, and erectile dysfunction. As men age, testosterone levels decline, a process called
Re: [TMIC] Is Living With Illness Choosing to Give In?
Just saw a really neat article on a friend's Facebook: Is Living With Illness Choosing to Give In? http://invisibleillnessweek.com/2011/09/06/is-living-with-illness-choosing-to-give-in/http://invisibleillnessweek.com/2011/09/06/is-living-with-illness-choosing-to-give-in/ It's not directly TM related but I would guess many can identify with it.. That rocked! I steeled myself, expecting the worse and o my gosh, she nailed it! Thank you, thank you, thank you! It is a balm to have someone else articulate your pain, and joy to have some words from someone else that explains. --
Re: [TMIC] gone to facebook
Now I understand the old expression of the curse of may you have an interesting life.. John, you make me smile! I'm using too much pain to explain and wonder'/full -- Love IT! Thanks! Akua --
Re: [TMIC] gone to facebook
Glad you said it, John! I've had the same question! Each year i search for someone near me--- not that i wish this on anyone ever.. it is quite odd when you look at the size of the directory we get compaired to the few people we have met in these groups. Im sure some dont know and some dont want to know. --
[TMIC] Hope You're Safe
I freaked out yesterday when i saw the map on TV. Called friends and family in my hometown, NYC. Hope you're safe Dalton! My family in Queens has a generator and has stocked up on food. My friend in lower manhattan has decided to stay, my friend uptown has stocked. I love my hometown and pray all goes well. There has never ever been an evacuation there before. That all be well. Akua --
[TMIC] Passing?
The inverse or obverse of the whole expectation thing is the pain of not getting credit. Like when the home health care agency lady insulted me when I complained about the unannounced unavailability of an aide to go shopping. She said more or lessyou need to take responsibility for yourself. ( for those who don't know, we have no paratransit where i am and no delivery services and only pizza, chinese food and drugs get delivered. and sadly i'm lactose intolerant, so no pizza.) Since the only help i get is this once a week, 2 hour shopping run which I pay for, I thought that being paralyzed and in a manual wheelchair and on my own, would automatically signify i was doing just that. So when a friend quizzed me for the third time about who the model was for my latest design and another said that getting my work out there seemed like magic -- they pushed a tender button I didn't know was there. About the model -- how the heck would i know who the model is? The company that accepted my creation got a model --- the implications of the question -- that i could somehow, from my home-bound nowhere in the sticks, arrange a shoot, photographer, and despite my check to check poverty, pay for a shoot... just irks me. Because that presumption glosses over what she saw when she visited me in my pained and decrepit condition. I am not okay. My world has collapsed. I am both crippled and in constant pain. The other question -- which i answered with a 12 point process list, bugged me too as it, a priori, dismissed the achingly hard work of doing something each day beyond waking up, cleaning and feeding myself. Magic? Like this just happens? Hard Work! So why don't I get more credit for what I do, an A for effort,a bit of applause for cobbling something from the rubble. Why is it either magic or not enough? Am I supposed to cry and whine or shiver and beg? Do i appear to be too much like the old me, just in a wheelchair? or is that those that are supposed to care, a little, care not at all. --
[TMIC] Not Getting the Help I need
The wonderful physiatrist who has ordered tests that my GP probably should have but didn't bother to, heard my concern about my weight gain, and reflected on my anemia. Knowing that I don't eat the standard schlock ( no land animals, no sugar, no white bread, for 40 years) and that I'm lactose intolerant ( no pizza, cheese, ice cream, whipped cream, no cow's milk for 16 years) and caffeine sensitive (2 years), he referred me to a nutritionist. The day before my appointment, I had a fit-- they were going to grade my street --- whacky in that it is one of the few pothole free stretches in town. I was worried about how i would get on the school bus that would take me to the nutritionist. It was challenging, and all my worst fears were realized but fortunately i had a kind man as busdriver who guided my wheel chair off the sidewalk and into the street to get to the lift. When i got to the doctor's office --- on a hill outside of town in gang mills in a facility called healthworks, the receptionist asked me if i was a diabetic or had renal failure.. . no i said looking for wood to knock on, being paralyzed with its attendant problems is quite enough. She did something with some papers checked on my identity and asked me again if i were diabetic, No I said. Then she went away for about 5 minutes came back and told me I couldn't see the nutritionist unless i wanted to pay out of pocket. What? but i was referred. Medicare doesn't cover the nutritionist unless you are diabetic or have renal failure. The out of pocket cost for the consultation is $350.00. I don't have a spare $350.00. Returning home was a beautiful ride seeing again the wide summer dry river and the green hills bright in the strong sun, but as we approached my side/ back, my driveway was blocked by a car and so getting me off the lift and onto the sidewalk was another struggle. I felt again the anger and frustration that I was disallowed a handicapped parking sign the would guarrantee me access to either my front or back door, but this was just ancient timber sparked by the day's denial. I recently listened to a lecture about how the US spends the most money in the world on healthcare, but has one of the worst outcomes/results/performances. * The United States ranks 43rd in lowest infant mortality rate, down from 12th in 1960 and 21st in 1990. Source: CIA Factbook (2008) * Life expectancy at birth in the US is an average of 78.14 years, which ranks 47th in highest total life expectancy compared to other countries. Source: CIA Factbook (2008) I wish I didn't need help, because I'm not getting any. --
Re: [TMIC] Not Getting the Help I need
A friend explained that the anger is the body's way of trying to get energy when everything is causing lack of energy due to pain, fatigue, etc. I had never heard that before. Thank you, Roger! I think anger is okay, it's all about how you use it. Akua --
Re: [TMIC] Neurology Now
You can get on SSDI immediately -- apply online. The first payment will not arrive until 6 months after approval. The 2 years was my waiting time for Medicare. Akua SSDI; I hear that it takes 24 months to get on SSDI. I am 63 this past April; in 24 months I will be 65, and in another 8 months will be at full retirement age of 66. I certainly am now really disabled, thanks to these frequent and randomly occurring attacks that leave me helpless. Will SSDI give me benefits I have not counted? If you know something that would help me, I would be happy to hear of it, because it is now clear that I am totally disabled as far as being a working stiff is concerned. Thanks, everyone, Dalton Garis From: Emily mailto:em...@telephonelady.comem...@telephonelady.com Reply-To: Emily mailto:em...@telephonelady.comem...@telephonelady.com Date: Wed, 29 Jun 2011 11:43:14 -0400 To: Dalton Garis mailto:malugss...@gmail.commalugss...@gmail.com Subject: RE: [TMIC] Neurology Now Hi Dalton, Keep in mind that Walmart has a list of medications that are only $4.00 per month (without insurance). It is extensive.and they have copies to take home in the pharmacy at each Walmart. I take this list to the doctor when we go so that the doctor can possibly prescribe one of the medications on the list and we can save some money. We have a prescription plan but it has a $3500 per year limit and my husband has reached that so we are paying for drugs out of pocket now. Also, if you have paid into social security you may be able to get social security disability..you might want to look into that as well. Welcome home to the USA.how are you doing since you have gotten here? Emily --
Re: [TMIC] Magnets
It seems people are beginning to understand the magnet benefits. Ok, I'm, still dealing them, so, if anybody's interested, lemme know, and I'll get em for you. I mentioned this 15 years ago, and nobody got on board, but I'm tellin ya, they work. I'm interested -- I was looking for the Diapulse, too! I willing to try anything that isn't poisonous. Since they don't know how I got this, there's not telling what will make it go away. --
[TMIC] Hypnosis and gold
Has anyone tried hypnosis? anyone know about gold ( taking it) and where to get some? --
[TMIC] tools
i need a big plastic thing sort of like a dust pan to hold a garbage bag open while i put leaves, plant debris inside i think it's already invented anyone know of this? --
Re: [TMIC] LDN
here. i love it, fought to get it. it changed my pain from 9 to 3. a mere $20/month. that's all i take -- well plus an aspirin and nadolol which brings my total to $25/month for drugs now if all the other things i need would cost less did i read where one or some of you were taking Low Dose Naltrexon? --
Re: [TMIC] tools
Hail Amazon.com! I found two things-- and many versions of these two things! Leaf Loader 2451027 Lawn Clean-Up Tool http://www.amazon.com/gp/customer-media/product-gallery/B003VPA6CI/ref=cm_ciu_pdp_images_0?ie=UTF8index=0 Midwest Gloves and Gear 45TA, Lawn Claws Leaf Scoops http://www.amazon.com/Midwest-Gloves-Gear-45TA-Scoops/dp/B000DILSAU/ref=pd_bxgy_ol_img_c Gardex Hand Poly Leaf Scoop Ls-1000 Rakes Leaf http://www.amazon.com/Gardex-Hand-Scoop-Ls-1000-Rakes/dp/B000H5SZ1Y/ref=pd_sim_ol_2 EZ Leaf Hauler Sport 6-by 4-feet 003 http://www.amazon.com/EZ-Leaf-Hauler-4-feet-0037/dp/B000S5Y7R4/ref=pd_ecc_rvi_cart_1 - Original Message - From: Akua mailto:a...@artfarm.coma...@artfarm.com To: mailto:tmic-list@eskimo.comtmic-list@eskimo.com Sent: Thursday, June 23, 2011 4:18 PM Subject: [TMIC] tools i need a big plastic thing sort of like a dust pan to hold a garbage bag open while i put leaves, plant debris inside i think it's already invented anyone know of this? -- --
[TMIC] Neurology Now
Had a couple of articles that may be of interest to those with unusual symptoms: TSC tuberous Sclerosis and Cervical Dystonia. BTW sub is free. --
Re: [TMIC] Neurology Now
Overcoming neuropathy! I want to enter the collective unconscious and grow some sheathing and reconnect the signalway. Yep...I've subscribed for a couple of years nowseems that there is usually one or two articles of interest in each issue... I also found the article about Jerry Mathers (Leave It To Beaver) interesting too Kevin NE Ohio (Canton) From: Akua a...@artfarm.com To: tmic-list@eskimo.com Sent: Mon, June 20, 2011 3:23:33 PM Subject: [TMIC] Neurology Now Had a couple of articles that may be of interest to those with unusual symptoms: TSC tuberous Sclerosis and Cervical Dystonia. BTW sub is free. -- --
[TMIC] OT: Are You Missing Money?
http://www.unclaimed.org/ has states unclaimed money links -- from AARP A couple of years ago I foud out I had $150... between the nursing home and returning home the PO cancelled forwarding and a check went back . --
Re: [TMIC] I am back in New York
YAY! I called and left a message. Say hello to my hometown for me! I miss it mightily! I spent the second half of my childhoood in Springfield Gardens, Queens. Akua Well family, I am back in New York; I have lost my job as associate professor in a small college in the Middle East. I could not lecture anymore, it was just too exhausting and I got sick a lot. I was let go with three months' notice. Now, as for most of us who have chronic diseases, I face financial oblivion, and I don't like the prospects. But that is our lot in the US, the only industrialized economy not offering government managed single pay medical coverage for all citizens as a right. Since coming home and being with my dear wife once again, I have not suffered even one attack of agonist and antagonist muscle contractions, that used to send me to the floor and unable to control my limbs and torso for hours. My condition is very sensitive to stress loads, as the lesions were in the brainstem, the switching station for the body. We are in Queens now, awaiting the news from the bank that will allow us to take possession of a new-construction condominium. For now, we live in a basement apartment. Anyway, for those friends living nearby, I would love to hear from them. My number here is (917) 459-9733, a local call in New York City. Take care, Dalton --
Re: [TMIC] OFF TOPIC;FRUSTRATION
Does your insurance company have case managers? Or can you get one through the public health system? When i had insurance (pre Medicare) a person at the insurance told me about a health prof. case manager who would coordinate these things. (then i got ssdisability and lost the insurance). Hi, Why do insurance companies make you send in referrals for every separate thing? You'd think they would include recommended tests,surgery,etc all under the main referral. Plus,there is no local orthopedic oncologist for me to see. I just realized late last night I need my PCP to refer me for the shoulder biopsy,and for a pathologist to read the results. Good thing I thought of it,or I'd be paying out of pocket (and my pockets are pretty empty!). Called my PCP's office and I need the doctor's name address phone # and diagnosis before they can send it to Boston. Just added stress I don't need. I'm taking deep breaths and trying to relax. On top of everything,I have pinkeye in both eyes.An itchy, gunky mess. Things have got to get better! Cheryl --
Fwd: [TMIC] OT A poem from POETRY OT
Is there a time warp? You sent this from the past to arrive today, June 17, to remind me that I need to write more? I will see this as a sign, that I need to get back in gear, work on my discernment and practice, to get back on the path. Thank you. I loved this poem. It made me laugh. Date: Fri, 19 Nov 2010 14:39:45 -0500 From: frank sheldon fr...@franksheldon.com To: tmic-list@eskimo.com tmic-list@eskimo.com Subject: [TMIC] OT A poem from POETRY OT UNMEDIATED EXPERIENCE By Bob Hicok She does this thing. Our seventeen- year-old dog. Our mostly deaf dog. Our mostly dead dog, statistically speaking. When I crouch. When I put my mouth to her ear and shout her name. She walks away. Walks toward the nothing of speech. She even trots down the drive, ears up, as if my voice is coming home. It's like watching a child believe in Christmas, right before you burn the tree down. Every time I do it, I think, this time she'll turn to me. This time she'll put voice to face. This time, I'll be absolved of decay. Which is like being a child who believes in Christmas as the tree burns, as the drapes catch, as Santa lights a smoke with his blowtorch and asks, want one? --
Re: [TMIC] Off Topic:I had a new adventure!
So sorry to read about your adventure! TM has given me new sensitivities -- sometimes I react to eggs, I'm now sensitive to peanut butter, and I can no longer drink coffee (unless decaffienated) -- I'm hyper sensitive to caffeine and i used to drink multiple cups of expresso daily until 2008 (year 2 of TM). Certain cocoas are bad, some are okay... I am also sensitive to sulfur and sulfites-- i was given a blood pressure med that made me itch, break out and feel awful -- turns out that it had some sulfur compound in it. Have you considered adding a naturopath,ayurvedic doctor, and acupuncturist to your healing team? (I have none of those, but wish I did) Think of it as a team, create a noteboook and e-file that you take to your various physicians... perhaps your condition creates/ or has created new sensitivities. Wishing you health and healing, Akua --
Re: [TMIC] Hello
Sorry to read this, Dalton! Hi Carol; This is Dalton. I just got terminated today. It seems I couldn't overcome the pull of TM, and my classroom work-that of which I was most proud-suffered. I have three months' notice. Last year they lightened the load and I did OK, but they said I worked too little. This year I taught three courses, teaching every day, and the pain, fatigue and med-head just made every day agony. It showed and the students complained. So, that's it. Up till now they have been very nice. But they don't keep persons around who can't pull the whole load. Not the way I wanted to go out. Thanks, Dalton From: Carol E mailto:snow121...@hotmail.comsnow121...@hotmail.com Date: Tue, 7 Jun 2011 09:43:34 -0500 To: mailto:tmic-list@eskimo.comtmic-list@eskimo.com Subject: [TMIC] Hello Resent-From: mailto:tmic-list@eskimo.comtmic-list@eskimo.com Resent-Date: Tue, 7 Jun 2011 07:44:27 -0700 Just testing to see if I am still on the list. I'm not receiving messages. Carol Worrying does not empty tomorrow of its troubles; It empties today of its strengths. --
RE: [TMIC] Hello
Dear Dalton, Given your wide experience in a part of the world unfamiliar to most Americans, I think you should write a book. You should use these last 90 days to find a agent and maybe get a book deal before you leave. Since you'll be back in the U.S. in 90 days, you could consider rebranding as an expert --- there's a number of PR firms that specialize in this, -- you'll be the person called on when they need a quote on a situation or development. The book connects to book tours, but then there's always the lecture circuit. You can help us understand that Arab and Muslim aren't the same thing and that each of those words are nearly useless descriptors as they encompass a wide range of cultures, countries, traditions and peoples. As a teacher of economics, you can decode for the public, what this or that international policy means, what the ramifications are There's media training available... I've forwarded you info from on of the small firms involved in grooming experts and getting placements. Further, if you return to NYC --- there are tons of possibilities of places to teach and a great infrastructure for getting you whereever you need to go --- and that might make the endeavor easier. That all be well, Akua --
[TMIC] Spinal-Cord Injury Victim First to Undergo Embryonic Stem-Cell Therapy
http://abcnews.go.com/Health/spinal-cord-injury-victim-undergo-embryonic-stem-cell/story?id=13742532 By STEVE OSUNSAMI (@SteveOsunsami) and BEN FORER June 2, 2011 Dr. Donald Leslie, medical director at the Shepherd Center in Atlanta, has high hopes. We want to cure paralysis, he said. We want to stop spinal cord injury. How incredible would that be? Leslie's mission has begun with T.J. Atchinson, the first step in research that he believes could lead to many steps for those who were told they would never walk again. Atchinson, 21, was the first human with a spinal cord injury to undergo embryonic stem cell therapy. The athletic college student's life took a hard turn in September when he was home from the University of Alabama visiting his family in Chatom and lost control of his car. Even before he was cut loose from the vehicle, he knew something was wrong. I realized I couldn't feel from about here down, nursing student Atchinson said, pointing to his waist. When I got to the hospital, they said I would never walk again. The accident took place on the birthday of Christopher Reeves, the actor who had fought hard for embryonic stem-cell therapy but never lived to receive it. Atchinson was still accepting the news about his situation when doctors told him he'd be a great candidate for the therapy. Stem cells are the building blocks of life, and they've been used in the laboratory to repair the broken spinal cords of small animals, who walked again. Atchinson agreed to become test case No. 1. Doctors opened his wound, while researchers used a remote control to guide the needle. They injected his spinal cord with a small dose of 2 million cells that, they hope, will transform into new nerve cells, attach to muscles and refire Atchinson's central nervous system. Although Atchinson's role was only to prove the procedure is safe, he believes it's already working. I can feel that, Atchinson said, pulling the hair on his legs. After six months of the therapy, he said, he's able to sense weight when he places heavy items on his lap. It's barely there, Atchinson said, but he can sense something. Rubbing his leg, Atchinson said, I can feel that, there's something there. His doctors are cautiously optimistic. It's very hard to measure sensation, Dr. Leslie said. But if he tells me he couldn't feel something before, and he can now, I got to believe him. And I want this for him more than you know. His mother, Anita McDonald, wants this, too, saying that people who oppose the therapy on religious grounds are unreasonable. It doesn't matter how long they've been in a chair, they all want to walk again, McDonald said. I just know a lot of people are against it, but until they've been put in the position, I don't think they should judge anybody. Doctors will continue to measure Atchinson's strength and test his nerves and muscles. He returns to school in the fall, moving on with his life but still holding out hope that his injury is healing. ABC News' Harvey Goldberg contributed to this rep -- http://abcnews.go.com/Health/spinal-cord-injury-victim-undergo-embryonic-stem-cell/story?id=13742532 http://www.akuadesigns.com http://www.akua.co http://www.akuadesigns.etsy.com http://www.ravelry.com/stores/akua-lezli-hope-designs http://www.zencrochet.blogspot.com/ http://www.artfarmpaperworks.etsy.com http://www.artfarm.com/papier.html http://www.absolutearts.com/portfolio/a/akualezli/ http://www.healrecover.blogspot.com http://www.akuahaiku.blogspot.com http://www.akualezli.blogspot.com http://imagecarve.blogspot.com/ http://lowgourmet.blogspot.com http://www.akua.artfire.com http://Akuadesigns.ShopHandmade.com http://en.dawanda.com/shop/AkuaDesigns When I despair, I remember that all through history the way of truth and love has always won. There have been tyrants and murderers and for a time they seem invincible but in the end, they always fall - think of it, always. Mohandas Gandhi
[TMIC] STem Cell Operation
in the US on the News, guy got feeling back in his legs! --
[TMIC] Too many digests
I've gotten about 8 digests today -- with one message in each. Is there anyway to fix it? --
[TMIC] Happy Birthday to WE!
Happy Birthday to my Fellow Twins and the Early Crabs --
[TMIC] ParaWalk?
http://parawalk.com/ This sounds fishy. Anyone know about this modality? Akua --
Re: [TMIC] OT right on time!
I couldn't figure out how to do it -- put money in a trust (need a lawyer) and then do Medicaid buy-in but perhaps that's a possibility for you. wellit happened. my short term disability ran out Monday. then it happened again,my first disabled social security check was automatically deposited into my bank account today. I am not eligible for Medicare for 2 years so I have no insurance for my wife or myself but things have a way of working out. I will just have to keep my chin up and my faith intact. He hasn't failed me yet. Not going to worry about it,just do what I can. Thankful. looked like clockwork. --
Re: [TMIC] 22 years!
Dear Jim, I am grateful for the community and institution that you have built. It has been shelter in the unending storm, beacon in the darkness, warm comfort in the cold. Thank you very, much. Akua 22 years ago today I became a ventilator dependent quadriplegic due to acute transverse myelitis. Here is a video interview I did in 2005 for the Reeve Foundation http://youtu.be/zvsnCpXpook If you feel so inclined to make a donation to the Transverse Myelitis Association, use my charity badge link http://www.makoa.org/jlubin/charitybadge Jim Lubin jlu...@eskimo.com http://makoa.org/jim disAbility Resources: http://www.makoa.org http://www.makoa.org/jlubin/charitybadge -- http://www.akuadesigns.etsy.com http://www.ravelry.com/stores/akua-lezli-hope-designs http://www.zencrochet.blogspot.com/ http://www.artfarmpaperworks.etsy.com http://www.artfarm.com/papier.html
[TMIC] Re: tmic-digest Digest V2011 #178
I am sorry to read this. Though being able to name it, to point at a spot and kwo what you are pointing at, has got to help. How did they arrive at this diagnosis? Does this help with treatment? I hope so! Wishing you the best, always! Akua Well, friends; I now have an answer to these symptoms of attacks of contractions. I have stiff man syndrome, or stiff person SPS. It is an autoimmune disease similar to all these others, only it attacks a place in the brain that makes tie chemical that transmits signals to the voluntary muscles. People with this can get attacks from stress, loud noises, too much stimulation, or just minding their own business. It is progressive with all the muscles finally getting involved. But I may have what they call an indolent case, which means it wont progress too fast, and I can get my work completed. Nice to have a time line!!! Regards, Dalton On 5/6/11 10:43 PM, tmic-digest-requ...@eskimo.com tmic-digest-requ...@eskimo.com wrote: --
Re: [TMIC] OT - Read, View, Pass Along Please
It was about getting World War 2 vets to the new memorial for them before they die. The link could have included this bit of information -- that's encouragement to read vs. no information whatsoever. There's no need to get huffy. Good netiquette is telling others where and what you are sending. --
[TMIC] OT: No green . . .
In the line at the store, the cashier told the older woman that she should bring her own grocery bag because plastic bags weren't good for the environment. The woman apologized to him and explained, We didn't have the green thing back in my day. The clerk responded, That's our problem today. The former generation did not care enough to save our environment. He was right, that generation didn't have the green thing in its day. Back then, they returned their milk bottles, soda bottles and beer bottles to the store. The store sent them back to the plant to be washed and sterilized and refilled, so it could use the same bottles over and over. So they really were recycled. But they didn't have the green thing back in that customer's day. In her day, they walked up stairs, because they didn't have an escalator in every store and office building. They walked to the grocery store and didn't climb into a 300-horsepower machine every time they had to go two blocks. But she was right. They didn't have the green thing in her day. Back then, they washed the baby's diapers because they didn't have the throw-away kind. They dried clothes on a line, not in an energy gobbling machine - wind and solar power really did dry the clothes. Kids got hand-me-down clothes from their brothers or sisters, not always brand-new clothing. But that old lady is right, they didn't have the green thing back in her day. Back then, they had one TV, or radio, in the house - not a TV in every room. And the TV had a small screen the size of a handkerchief, not a screen the size of the state of Montana . In the kitchen, they blended and stirred by hand because they didn't have electric machines to do everything for you. When they packaged a fragile item to send in the mail, they used a wadded up old newspaper to cushion it, not Styrofoam or plastic bubble wrap. Back then, they didn't fire up an engine and burn gasoline just to cut the lawn. They used a push mower that ran on human power. They exercised by working so they didn't need to go to a health club to run on treadmills that operate on electricity. But she's right, they didn't have the green thing back then. They drank from a fountain when they were thirsty instead of using a cup or a plastic bottle every time they had a drink of water. They refilled their writing pens with ink instead of buying a new pen, and they replaced the razor blades in a razor instead of throwing away the whole razor just because the blade got dull. But they didn't have the green thing back then. Back then, people took the streetcar or a bus and kids rode their bikes to school or walked instead of turning their moms into a 24-hour taxi service. They had one electrical outlet in a room, not an entire bank of sockets to power a dozen appliances. And they didn't need a computerized gadget to receive a signal beamed from satellites 2,000 miles out in space in order to find the nearest pizza joint. But isn't it sad the current generation laments how wasteful the old folks were just because they didn't have the green thing back then? --
Re: [TMIC] O.T. cancer diagnosis
Wishing you the best, always. that you heal and are well. --
Re: [TMIC] OT - Read, View, Pass Along Please
Chalk it up to my paranoia, but if there is no summary or excerpt, I don't click on unexplained links. do a cut and paste if you want others to read it ... --
Re: [TMIC] tornado concern
The tornadoes and extreme lightning hiot here last week. Before the tornadoes we lost power about 2 p.m. My cell phone was low -- so I couldn't recharge it. And i could barley get out of bed and debated whether to stay or try to get up... since i'm paralyzed, i need electricity to move my bed. I called 911 but they didn't answer and i was low on on the cell. they called me back asking what was my emergency. I said I didn't have any power and they answered so what and that used up all my cell phone. I have a landline and thought to call the power company. My landline was down. Fortunately after three frightening hours the power came on and then the TV warned of the tornado. Where could i go? What room would be safe? Paralyzed and in a wheelchair all I could do was pry. It touched down twice and ball lightning lit my house and thunder shook it. I was up until 8 a.m. and have just begun to recover. Akua --
[TMIC] HAPPY BIRTHDAY MAY FOLKS!
HAPPY BIRTHDAY TO THE MAY-LINGS! --
Re: [TMIC] revisiting an old issue
I too had to wait two years. I applied immediately, too. The wait for disability is 6 months, the wait for medicare is two years from onset (or approval). Myapproval was on the first application. I was still without money for six months and health care for two years while I was paralyzed and in a manual wheel chair. (I had started a new job two months before TM crippled me and there was no health insurance...) --
