[TMIC] TM and Me Terry Parker
Terry had spinal surgery Monday to remove a large calcified disk that was compressing his cord @ T12, (not related to his TM). However, the Neurosurgeon feels that it MAY increase his mobility! He came home from the hospital last night and is doing fairly well, although he certainly feels some pain. This morning when he got up he said that the pain he had been feeling for several months that radiates from his hip down to his leg is gone! We are so very hopeful. St. Paddy's Day marks Terry's 10 year un-birthday of TM. Many of you 'oldtimers' know, that he had no improvement the first 1.5 years, but very, very gradually over the years he improved to where he can now take some steps and is completely independent, with the exception of wheelchair dependent. He is still on Gabapentin, Baclofen and 7 mg of prednisone. Thanks to those of you that sent good wishes, prayers love! Sandy Parker
Re: [TMIC] new therapy for paralyzed
Might I suggest you forward this to Dr. Kerr to get his opinion? Thanks, Sparker Ventura, CA
Re: [TMIC] Rick Steele
Terry and I had the pleasure of meeting Rick at the first TM Symposium we went to approx. 8+ years ago. Since then, we have had several visits with he and his partner, Bob, (we live fairly close to one another). The last time we had visited their home, they had recently put in the redwood paths in their yard to make the slope wheelchair accessible, (which is most incredible, by the way). Terry had not seen the majority of the yard until that time. He finally got get up to the koi pond and stream that runs down the slope. Rick was so proud of his home and overwhelmed that he could finally have the run of it once again. Rick was an extraordinary man and will be greatly missed. He had a beautiful smile, a great sense of humor and a huge heart, just to name a few of his wonderful qualities. Sandy
Re: [TMIC] Looking for TMr's for support groups
Sandy Parker, Caregiver Ventura County, CA
[TMIC] Wijits wheelchair modification
Are any of you familiar with wijits, using your hands to propel a manual w/c??? Since Terry has issues with his shoulders, this may assist him.? Your opinion is appreciated. Sandy Parker http://www.wijit.com/index.php
Re: [TMIC] OT/Healthcare
Yes, it seems many of us have to fight to get our private insurances to pay up!? We had Blue Cross, (a very good policy, I might add), when Terry was first DX'd with TM.? They immediately refused all payment, fought me because any treatment was in their opinion, experimental.? ie:? Plasmapheresis and Gamma Globulin treatments.? I didn't give in, I fought back and got the Sec. of the State of Calif. involved.? Funny thing about it; they changed their minds after speaking with her.? Why do we have to threatened?our insurance companies?to have something paid for when we always paid our premiums?? Do we need to have insurance to cover our insurance company if they fail? -Original Message- From: Akua a...@artfarm.com To: tmic-list@eskimo.com Sent: Mon, Aug 3, 2009 2:24 pm Subject: RE: [TMIC] OT/Healthcare IF YOU LOOK AT CANADA AND THE UK, YOU SEE HOW YOU HAVE TO WAIT MONTHS FOR TESTS LIKE BREAST BYOPSY, ETC.. YOU ALSO HAVE TO WAIT MONTHS TO SEE A SPECIALSIST.? ? Has anyone here seen *any* of the documentaries and news reports on this?? ? My friends in the? U.K. and Canada have NONE of the problems with medical care that I have AND they don't pay? through the nose.? ? It hurts that I spent tons of money on insurance--- and unlike savings-- I have nothing to show for paying into insurance for DECADES-- without a single problem, nor a birth. When I retired and I transitioned to COBRA, the fees were unbelieveable--- enough to feed a village, larger than my mortgage. I am furious--- that as a non smoker, exerciser, vegetarian -- all that money has gone pouf!? and when TM struck me-- I was left destitute. I have no trust of private insurance as a part of any health? care improvement or solution.? ? Akua? ? -- ?
Re: [TMIC] Class Reunions (way too honest)
WELL HELL FRIENDS!!! I am up to 145lbs (I gained 10lbs). I wear size 10 jeans and really don’t feel comfortable with my NEW body. I don’t like the way I look or feel. I do not like having a belly or the feel of my thighs rubbing together. You asked for honest and here it is. Aging is HELL THAT'S ME IN A NUTSHELL AND I DON'T HAVE TM! Yes, I will count my blessings! SPARKER:) **Dell Summer Savings: Cool Deals on Popular Laptops – Shop Now! (http://pr.atwola.com/promoclk/100126575x1222696924x1201468348/aol?redir=http:%2F%2Faltfarm.mediaplex.com%2Fad%2Fck%2F12309%2D81939%2D1629%2D1)
Re: [TMIC] Class Reunions (way too honest)
That is so very sweet of you! I needed that! The Doc told me yesterday that I need to strengthen my core because I am having a lot of back issues. So, my body is out of shape, but that is only temporary Terry is always very kind regarding my looks! He is truly a sweetheart. xoxox **Dell Summer Savings: Cool Deals on Popular Laptops – Shop Now! (http://pr.atwola.com/promoclk/100126575x1222696924x1201468348/aol?redir=http:%2F%2Faltfarm.mediaplex.com%2Fad%2Fck%2F12309%2D81939%2D1629%2D1)
Re: [TMIC] Re: (TMIC) Sex.
THAT IS SUCH A FABULOUS STORY, JUDE!? I am so very happy for you and Dave! SPARKER -Original Message- From: heyjude48...@aol.com To: grace...@gmail.com; tmic-list@eskimo.com Sent: Sat, Jun 27, 2009 1:41 am Subject: Re: [TMIC] Re: (TMIC) Sex. Gracie, ? No need for you to feel funny about posting re:? sex.? I feel the same way as you do. ? Losing the desire for sex as well as the physical ability (all the dust balls and spider webs) inside there makes me feel much less than a woman than I certainly used to.? However, ? Something happened this week that surprised the heck out of me and Dave.? We went out, after a couple of years, and sought out my previous hairstylist, found her and I had my hair colored blond and then highlighted on top of that and Dave got his cut which blended the white in so that it looked very nice on him.? We both found ourselves looking better, feeling like dressing better...he shaved and I put on make-up for the first time in a long time.? It is really nice to feel pretty again for Dave and he says he feels the same way.? It made us have feelings that we hadn't had in a long while and as the saying goes, where there is a will, there is a way. ? So, without going into details, a good time was had by all and now I find myself keeping up with my makeup and making an effort to get dressed and get out of bed, which does take some effort. ? Well, my dear friend, you take care...don't let yourself get too far down today, and remember that Pam is all around you all of the time as I feel her near my side especially when I am working on a project I know that we both would enjoy doing together. ? I love you, Jude ? In a message dated 6/24/2009 6:48:26 A.M. Eastern Daylight Time, grace...@gmail.com writes: I can't believe?that I am going to reply to this, as it's an issue that I just try hard to avoid, but.?okay, so here goes.? During my first NMO hit, I lost all feeling *there*.? At first?I was hopeful that it would slowly come back, but my second bad hit sealed the deal.? I can remember lying in my hospital bed trying to get up the nerve to speak with my doc about it.? Finally one day I mentioned it in passing, but didn't really press the matter---I was too embarrassed.? Later that night,?one of my neuro nurses came in to sit and talk with me about the disease, as I was her first NMO patient.? We talked a lot about nerves and nerve damage, and as I was very savvy re: the implications of having relapsing NMO, we spoke freely.? (She's amazing, and I've since had her as?my nurse in the?neuro ward, many times.)? Finally, I just took a big swallow and blurted it out.? She told me the truth, that?in my case it was unlikely that?feeling would return, but that one?should still k! eep?hoping that one day there would be some increase in sensation.? She was correct---I have been numb from my sensory level downwards since 2005.? Most of my body still feels as if it has been shot up with Novocaine.?? ? Anyways, I?was shell shocked and actually mourned the loss.? To lose something that is so integral to one's life, is a violation of sorts.? It was bad enough that?I had?no control over my other bodily functions,?but the loss of physical sexuality was adding insult to injury.? I felt as if I had lost my *person-hood*, and had suddenly become androgynous.? I still fight those feelings, and yes, sometimes I still cry about it.? Sexual contact offers an intimacy like no other.? Some of us are more sexual than others, and the loss can often be the cruelest cut of all.?? ? These days I try hard not to ever even think about it.??Whenever I do, I become extremely angry at what I perceive to be the unfairness of it all, and I lose sight of what I do still have.? I should be very grateful for every day that I draw a breath---unfortunately, sometimes the negative feelings get the better of me.??For me, it's been a tough loss to deal with. ? Okay, signing off?before?I totally embarrass myself. ? Grace?? An Excellent Credit Score is 750. See Yours in Just 2 Easy Steps!
Re: [TMIC] Need your prayers
I am SO VERY sorry for your husband. I must be blunt here: that is very selfish of your daughter. This is the day every Dad looks forward to, to give his little girl to the one she loves.my husband would be devastated! She needs a dose of reality. Who is paying for the wedding anyway? **Make your summer sizzle with fast and easy recipes for the grill. (http://food.aol.com/grilling?ncid=emlcntusfood0004)
[TMIC] Re: weaning off of Tyenol?
We purchase them at Trader Joe's, ( I don't believe they are national, yet), $8 for 100? -Original Message- From: bobby jim elbobber...@earthlink.net To: parkersw...@aol.com Sent: Sat, Jun 20, 2009 5:28 pm Subject: Re: weaning off of Tyenol? Ah yes, milk thistle.?? We take that here as well, among other herbs and supplements. ? Regards,??? BobbyJim From: parkersw...@aol.com??? To: wolft...@optonline.net ; tmic-l...@eskimo.com Sent: Saturday, June 20, 2009 2:54 PM Subject: Re: [TMIC] weaning off of Tyenol? Terry takes many meds and use to have an elevated liver count.? Since he started taking the herb,?Milk Thistle, is count is down below normal.? -Original Message- From: Kevin Wolfthal wolft...@optonline.net? To: tmic-list@eskimo.com Sent: Fri, Jun 19, 2009 6:30 pm Subject: [TMIC] weaning off of Tyenol? Hi all,? ? Because I haven't been able to get my pain treated properly, I've been taking? Tylenol Extra Strength w/Acetaminophen for a long time. I don't take it every? day, but regularly. I take the bare minimum dose, usually no more than one a? day. I have not had liver probems, but recently, new warnings have come out? about long term use of acetaminophen. So I am cutting my usage down. Just? wondering if there is a proper 'weaning off' of meds like Tylenol? I tried? going cold turkey, but that didn't work. I will ask my doc about this also,? just wondered if there's a basic weaning off rule.? ? Thanks,? Kevin? ? PS: My Mom turned 86 today! Amazing lady! I made her some Josh Groban,? Michael Buble, and Billy Joel cd's, and gave her flowers. :)? ? ?
Re: [TMIC] Transverse Myelitis Network
VERY well said, Debbie! **Download the AOL Classifieds Toolbar for local deals at your fingertips. (http://toolbar.aol.com/aolclassifieds/download.html?ncid=emlcntusdown0004)
Re: [TMIC] Accessibility Relationships
Add to the list of complaints: Have you noticed that at many hotels, the ADA rooms are furthest from the elevators? And yes, you are lucky if they have ADA rooms on the first floor. Also, the rooms often face the parking lot and seldom the garden, pool or view? Is this discrimination? I feel it is. At some commercial stores or restaurants we have had to get Terry through the kitchen or the back door to get to the bathroom. In one instance, we had to go two buildings down! In passing, I mentioned this to a Civil Rights attorney I know and he said, lawsuit. We haven't pursued that, of course. This friend has filed many suits against large hotel chains, music festivals, etc., as they are hardly ADA compliant. He himself is disabled and knows first hand the discrimination. I am not saying whatsoever that every place discriminates, not by a long shot. But many business owners are not very aware of the disadvantages that people in wheelchairs are faced with. That's my tangent for the day. As a wife of a TM'er, if I have time tomorrow, I will try to address the relationship issue. **Download the AOL Classifieds Toolbar for local deals at your fingertips. (http://toolbar.aol.com/aolclassifieds/download.html?ncid=emlcntusdown0004)
[TMIC] (no subject)
Hi Everyone, I was un-subscribed for awhile when we decided to run away to Mexico for a week last month and just got back on board today. I hope everyone is doing well. How is our Jude? (Make mental note to self to write her privately) It's very hot here today. Spring has not completely sprung here in Ventura, yet the heat of the summer is upon us with a vengeance as of yesterday. 99 degrees. I was SO looking forward to Spring... I hope it reappears soon. Terry is having some difficulties and at long last, gets his second (complete) shoulder replacement tomorrow. He is looking forward to it, but not the recovery as he will be down to one limb, (so to speak), until he has the mobility back in it. Hopefully he'll be pain free once he's recovered, too. I will keep you posted. As always, I am so glad you are in my life! Sandy Parker **Access 350+ FREE radio stations anytime from anywhere on the web. Get the Radio Toolbar! (http://toolbar.aol.com/aolradio/download.html?ncid=emlcntusdown0003)
[TMIC] This wonderful group!
I just want to say as I sit here in the background lurking, that I LOVE the friendships that everyone has developed here. I LOVE that each of you (AND me) can count on one another. Many of you have been thru a lot lately: hospitalizations, deaths, illnesses, etc. There are so many strong shoulders to lean on in this group and we are all very bless to have one another in our lives. I most certainly count myself among those blessed! Sandy Parker **A Good Credit Score is 700 or Above. See yours in just 2 easy steps! (http://pr.atwola.com/promoclk/10075x1215855013x1201028747/aol?redir=http://www.freecreditreport.com/pm/default.aspx?sc=668072%26hmpgID=62%26bcd=De cemailfooterNO62)
[TMIC] Happy Thanksgiving
HAPPY THANKSGIVING TO ALL MY WONDERFUL FRIENDS ON THIS SITE. YOU HAVE GIVEN ME STRENGTH, ADVICE, ENCOURAGEMENT AND PRAISES, JUST TO NAME A FEW THINGS. I AM VERY THANKFUL AND GRATEFUL TO HAVE YOU IN MY LIFE! XOXO Sandy PS: AREN'T THE AROMAS IN THE HOME FANTASTIC TODAY? **Life should be easier. So should your homepage. Try the NEW AOL.com. (http://www.aol.com/?optin=new-dpicid=aolcom40vanityncid=emlcntaolcom0002)
Re: [TMIC] Anybody else been there?
First off, Jude suffers so much and what she wrote is so selfLESS. She is always thinking of someone else. We love you Jude! As a caregiver I will put my 2 cents in. I SO sympathize with the daily pain that goes with TM. I KNOW, but I don't FEEL the pain. I know it because Terry is so very articulate about it, and it pains me emotionally to see such horrific pain. I think all of you that know me and how I react to him and TM. With that said, this is what we need occasionally: Just need a little sympathy and for you to tell us that you are sorry we are in pain. We just need a little validation that our pain still matters. Pain is relevant to each individual. We can't take that away. UNLESS you live with a chronic complainer, of course! I try not to complain because my pain, (2 or 3 partially and 2 complete herniated discs and rheumatoid arthritis), is minimal relative to Terry's. But it is MY pain and it does hurt at times. So, when those of us that complain minimally, give us a minute, tell us your sorry for our pain, and wait for a little bit if you need sympathy for your pain. A few short, sweet words go a long way! Sandy **One site has it all. Your email accounts, your social networks, and the things you love. Try the new AOL.com today!(http://pr.atwola.com/promoclk/10075x1212962939x1200825291/aol?redir=http://www.aol.com/?optin=new-dp %26icid=aolcom40vanity%26ncid=emlcntaolcom0001)
[TMIC] Re: Terry walking
Leila, ( I love your name)! I asked Terry what he feels has made him take all these steps recently and he can't really pinpoint one thing. His muscles definitely atrophied, but he has begun to rebuild them a bit. He had GREAT LEGS! He doesn't do PT accept in the summer in a pool. He can completely walk in a pool. He has this buoyant waist belt that assists him so he can go the distance. I feel some of the reason he was able to take these steps is that he is always in and out of his wheelchair, he stands a lot cooking and gardening using the wheelchair for balance if needed. I also think if he didn't have shoulder issues, he would have been able to use a walker or crutches much sooner or more often. His arms became his legs and now his shoulders are shot thanks to osteonecrosis (prednisone induced). One shoulder replacement and 1 other surgery on each shoulder. His other shoulder needs to be replaced. I'm wondering why you don't have a firm DX?? The gradual deterioration sounds more like MS to me. I am no doctor, tho.Have they done a brain MRI? I'm so sorry for your decline. As everyone says here, keep up the PT!! And we need to continue to push for stem cell research! Sandy Dear Sandy, Thank you so much for telling about Terry walking. This is a beautiful miracle. If you have time, please tell me how you kept his muscles from getting atrophied all those years. Any special exercises? I have TM or possibly MS, not sure, since five years, gradual deterioration, now in wheelchair, unable to stand since two years. I am not paralyzed though. I do exercises daily with legs and arms. I am using an electronic lift for transfers and I have a caregiver day and night. I wish to know what to do to start walking again. I believe it is possible. Your letter gives me renewed hope. I would love to know what Terry did to start walking, something that would help others. Please write! Leila **One site has it all. Your email accounts, your social networks, and the things you love. Try the new AOL.com today!(http://pr.atwola.com/promoclk/10075x1212962939x1200825291/aol?redir=http://www.aol.com/?optin=new-dp %26icid=aolcom40vanity%26ncid=emlcntaolcom0001)
[TMIC] Anybody else been there?
Oh Jan! You just always brighten my day. You seem like you are always so positive and under duress from TM! Thank you so much. Wow! I've become active again on the forum. We go thru those lulls where some things don't always pertain. This forum has helped me so much, (I am sure I have said that many times). xoxo Sandy **One site has it all. Your email accounts, your social networks, and the things you love. Try the new AOL.com today!(http://pr.atwola.com/promoclk/10075x1212962939x1200825291/aol?redir=http://www.aol.com/?optin=new-dp %26icid=aolcom40vanity%26ncid=emlcntaolcom0001)
[TMIC] running over toes
**One site has it all. Your email accounts, your social networks, and the things you love. Try the new AOL.com today!(http://pr.atwola.com/promoclk/10075x1212962939x1200825291/aol?redir=http://www.aol.com/?optin=new-dp %26icid=aolcom40vanity%26ncid=emlcntaolcom0001) ---BeginMessage--- I just returned from the market and while there I encountered a man that winced very badly. I said to him, you look like you hurt. He said he ran over his BROKEN TOE and it hurt so bad. I couldn't help but crack up after the conversations we have had here today! Sandy **One site has it all. Your email accounts, your social networks, and the things you love. Try the new AOL.com today!(http://pr.atwola.com/promoclk/10075x1212962939x1200825291/aol?redir=http://www.aol.com/?optin=new-dp %26icid=aolcom40vanity%26ncid=emlcntaolcom0001) ---End Message---
Re: [TMIC] Support Group Meetings
What a great guy your husband is, Debbie! You are right that it is important as a caregiver to go to support meetings. It gives one a much clearer knowledge of the effects of TM. Not to mention, you meet the greatest people! **One site has it all. Your email accounts, your social networks, and the things you love. Try the new AOL.com today!(http://pr.atwola.com/promoclk/10075x1212962939x1200825291/aol?redir=http://www.aol.com/?optin=new-dp %26icid=aolcom40vanity%26ncid=emlcntaolcom0001)
Re: [TMIC] GOOD NEWS!
Toyota also gives a $1000 to equip a vehicle you buy from them. **Get the Moviefone Toolbar. Showtimes, theaters, movie news more!(http://pr.atwola.com/promoclk/10075x1212774565x1200812037/aol?redir=htt p://toolbar.aol.com/moviefone/download.html?ncid=emlcntusdown0001)
[TMIC] GOOD NEWS!
8 1/2 years + with TM for Terry and he just spontaneously walked at our friends house the other last night. (Our friend being follow TM-er Rick Steele). He stands up from his wheelchair all the time and cooks, gardens, etc. He sometimes walks up stairs with the support of the banisters and has taken a few steps unassisted before. But, last night he just got up and walked without any support or assistance for a total of perhaps 40 steps! He was quite well balanced, all things considered. My suggestion to him was to get out the walker and the arm crutches and clean off the cobwebs and start practicing more at home. It's just amazing how much progress Terry has made. He's so determined and has such a good attitude through all his pain. For those of you that went from a wheelchair to walking or walking with assistance, what helped you? Any advise is greatly appreciated! Sandy Parker **Get the Moviefone Toolbar. Showtimes, theaters, movie news more!(http://pr.atwola.com/promoclk/10075x1212774565x1200812037/aol?redir=htt p://toolbar.aol.com/moviefone/download.html?ncid=emlcntusdown0001)
[TMIC] GOOD NEWS PART 2:
I had some thoughts after I wrote about Terry's walking. With all the research that I have done on TM, I have read that it is unlikely that he should have this much recovery so far down the road, (8 1/2 years).I guess each case is so individualized, that anything is possible? Regardless, I am very happy for every little bit of progress he makes. Thank you, all of you. You know that I came into this group for support as a caregiver to seek any information that I could get to help Terry. It has been amazing how much support I have gotten from many of you over the years. I have been so blessed to meet so many wonderful people. You have all been MY cheerleaders! Love Sandy **Get the Moviefone Toolbar. Showtimes, theaters, movie news more!(http://pr.atwola.com/promoclk/10075x1212774565x1200812037/aol?redir=htt p://toolbar.aol.com/moviefone/download.html?ncid=emlcntusdown0001)
Re: [TMIC] California Fires
I live here in So Cal., East Ventura County. We are about 20 miles from the Sylmar fire. It is so terribly hot and windy now. Optimum conditions for the fires, unfortunately. Yes, smoke fills the air. We went to Rick Steeles home a few days ago. The last fire came right to his property line. They were lucky to have a home to come home to. Let's hope the weather changes very, very soon. Sandy Parker **Get the Moviefone Toolbar. Showtimes, theaters, movie news more!(http://pr.atwola.com/promoclk/10075x1212774565x1200812037/aol?redir=htt p://toolbar.aol.com/moviefone/download.html?ncid=emlcntusdown0001)
Re: [TMIC] Guidelines
Well said, Mindy the Artist! **Play online games for FREE at Games.com! All of your favorites, no registration required and great graphics – check it out! (http://pr.atwola.com/promoclk/10075x1211202682x1200689022/aol?redir= http://www.games.com?ncid=emlcntusgame0001)
Re: [TMIC] age related tm
Terry's butt went numb first, also... **Get trade secrets for amazing burgers. Watch Cooking with Tyler Florence on AOL Food. (http://food.aol.com/tyler-florence?video=4?NCID=aolfod000302)
[TMIC] age at incident
Terry was 55 and hit at T-7. He is still taking 7 mg of steroids a day. No cataracts, but his bones have deteriorated. He will be going in for his second shoulder replacement soon. Sandy **Get trade secrets for amazing burgers. Watch Cooking with Tyler Florence on AOL Food. (http://food.aol.com/tyler-florence?video=4?NCID=aolfod000302)
Re: [TMIC] Thanks to the list/understanding TM
My Dear Friends, Thanks to all of you for your kind words. Thank you to the fellow caregivers who are committed to helping their spouses/sig others to have a better quality of life, for being in their lives and staying put!Aren't relationships suppose to be 50/50??? I am sorry for those that aren't. Terry gives so much to me; why would I not give so much in return? Some of you old timers (on this site), know there have been struggles with this life and Terry's TM. But, obviously nothing insurmountable. I will say that I was SO PISSED OFF (can I say that here?) at his wheelchair initially. I took my anger out on his wheelchair every time I had to get it in or out of the trunk of my car. I would cuss that SOB, (can I say that here?) out! I hated it! That's what I hated! I didn't hate the damn (can I say that here?) TM. I hated that damn (can I say that here?) wheelchair! That rigid piece of crap, (can I say that here)? I can actually feel my anger right now as I write this. However, I feel it with a smile on my face as that was so very long ago. TM has allowed me to grow and become a better person. It's OK now and he has a great wheelchair that's very easy to get in/out of the car. One flip of the backrest and I grab it and swing it into the back of the little (non gas guzzler), SUV. (OK, so I rambled)... Aloha for now, my friends! Sandy **Need a new ride? Check out the largest site for U.S. used car listings at AOL Autos. (http://autos.aol.com/used?NCID=aolcmp0030002851)
Re: [TMIC] Thanks to the list/understanding TM
I don't have TM, my husband does, (8 years now). Therefore, I will try to speak from the standpoint of understanding. However, I don't FEEL his pain, but I SYMPATHIZE with his pain. I sympathize with; his daily issues, his paralysis, his complaints, his clonus, his feeling of inadequacies, his feelings of frustration and pain over sexual dysfunction and bladder dysfunction, his loss of his past life and of OUR past lives. I LISTEN to him. I AM THERE FOR HIM. I encourage him, I apologize for his pain and anything that will make him understand that I UNDERSTAND to a degree. But, I don't think anyone can FULLY understand unless they have TM. He knows I understand more about TM than many. But, as they say, unless you can walk the walk.. I, more than likely, will never walk that walk. I love him, I am committed to him and I will continue to do my best to understand TM thru his eyes. He is very detail oriented about it - so that in itself, helps me understand better. Anyone with a disease such as TM, needs someone to listen to them with compassion in their heart. I will always do my best to be that person. Sandy Parker Has anyone ever figured out how to make non TM'rs understand what we go thru 24/7. If so plase sare the secret! -Original Message- From: Robert Pall [EMAIL PROTECTED] To: [EMAIL PROTECTED]; tmic-list@eskimo.com Sent: Tue, 15 Apr 2008 12:36 pm Subject: RE: [TMIC] Thanks to the list. Has anyone ever figured out how to make non TM'rs understand what we go thru 24/7. If so plase sare the secret! Rob From: [EMAIL PROTECTED] [mailto:[EMAIL PROTECTED] Sent: Tuesday, April 15, 2008 3:30 PM To: Robert Pall Subject: Re: [TMIC] Thanks to the list. Rob, That's the best thing about this list.Everyone knows how it feels to have tm;it's not something that a regular person understands. Cheryl in Easthampton,Mass. Robert Pall [EMAIL PROTECTED] wrote: I would just like to thank all of the people on the list who responded to me in the past few weeks. It helped me thru a difficult time! I have been married for 38+ years and my wife has no idea what I go through on a daily basis….nor do my children, my relatives and my friends. Only the people on the list truly understand what it is like to get sick and never get better! Only the people on the list relate to terms such as banding, pins needles, freezing/burning etc. Only the people who have TM can truly relate to TM and how (in my case) in just a few hours my life changed for the worse. I am sorry I and all of you have TM…but I am extremely grateful for the people on the list who always find the time to help! THANK YOU ALL! Rob in New Jersey between -00-00 and -99-99
Re: [TMIC] QUESTION
Terry's immune system has improved over the past few years. Initially after TM, he would get a cold which would last several weeks, as well as bronchitis for 3 mos. We were very careful as to who he was exposed to. Now, I am catching everything that goes around, and his effects are minimal, even as we have the 3 little grandkids around who constantly have colds, etc.! **Planning your summer road trip? Check out AOL Travel Guides. (http://travel.aol.com/travel-guide/united-states?ncid=aoltrv000316)
[TMIC] Terry's Anniversary
St. Patty's Day marks 8 years since Terry was DX'd w/TM. We will celebrate with Corned Beef and Cabbage washed down with the traditional Irish Drink, Tequila Overall, he's doing phenomenal, especially considering how acute he was back then. Seems to be continually improving and determined to walk without assistance before long! Happy St. Patty's Day! Sandy Terry **It's Tax Time! Get tips, forms, and advice on AOL Money Finance. (http://money.aol.com/tax?NCID=aolprf000301)
Re: [TMIC] Listening, attention, and solitude
Attention??? Drifting off?? Solitude??? Huh, what were you talking about??? I don't have TM but I have all these other issues at the fantastic age of 54.?? I agree with Tracey:? too much going on everyday.? Life has gotten too complicated.? I long for the?yesterdays?of the simple things? The one thing that we are attempting to teach our grandkids, is that play isn't TV, computers or other screen time.? It is the out of doors, the homemade magic wands, digging in the soil, watching the ants march, flying a kite, playing tag, enjoying the flight of the ?hummingbirds, listening to the songs of the canary's, or Ava Doodle's (granddaughter), favorite tune from the 1950's: Bushel and a Peck.?? She thinks this song was written for her because, (you mature ones will know this), it says, doodle, doodle, doodle, doodle,doodle, doodle, doodle, doodoodoo... The Simple Things. Sandy
Re: [TMIC] Hello from Jude
OH JUDE!? YOU ARE EVER THE DIPLOMAT!?? In all your current distress, you are, (as always), thinking of others.?? What you said came our beautifully!?? I so wished we were hearing more from you, but I understand things are difficult for you right now. ? You are always close to my thoughts and I hope and pray *(to whomever it may be that I pray to), that you will get healthy and come home very soon. Love you, Jude! Sparker Practice Random Acts of Kindness? More new features than ever. Check out the new AOL Mail! More new features than ever. Check out the new AOL Mail ! - http://webmail.aol.com
Re: [TMIC] Symposium in Anaheim
Terry and I will be attending and look forward to seeing some of our old friends as well as getting acquainted with new ones! Sandy Parker **Ideas to please picky eaters. Watch video on AOL Living. (http://living.aol.com/video/how-to-please-your-picky-eater/rachel-campos-duffy/ 2050827?NCID=aolcmp0030002598)
[TMIC] OT - MERRY CHRISTMAS /OR HAPPY HOLIDAYS
? Hello My Friends! ? You are never far from my thoughts even though I am no longer on the list chatting back forth.?Life,?for me, is very busy these days.? No excuse, but that's how it is.? ? We are doing well these days.? Terry is down to his ol' slim self after packing on those 50+ steroid pounds.? He looks wonderful and feels quite well despite it all.? He still has his typical pain issues associated with?TM, but manages to endure it all.? His shoulders have never recovered as well as he would have hoped from the surgeries and replacement.? He certainly has his ups and downs and is still wheelchair dependent.? However, he loves to show off that he can stand and walk many steps at certain times, particularly when a friend or family member comes to visit.?? He just LOVES to stand up and give big hugs!?? Awh, the great pleasures of life!?? ? Our 3 little grandkids continue to delight us on almost a daily basis.? The happiness they alone give, is the most grateful and precious gift of all.??? ? I hope all of you have a wonderful holiday whether it be Christmas, Hanukkah, Kwanzaa (or none of the above), and a very Happy and HEALTHY New Year! ? LOVE Terry Sandy Parker More new features than ever. Check out the new AOL Mail ! - http://webmail.aol.com
Re: [TMIC] grocery delivery - Akua
You may also consider posting a bulletin at your apt. asking for free assistance in grocery shopping, etc. Haven't most of us needed and given help many times in our lives? Many people within your building may be willing to help. They must go to the grocery store for themselves anyway, one must assume. Our local senior (over 55 y/o), communities offer all sorts of free assistance by willing neighbors simply by phoning. Sandy Parker PS: Hi everyone - miss you all! Keep up the great help that you give to one another. We are quite well and extremely busy with life. Terry TOOK 20 STEPS recently!!! He's on a mission He has his issues, of course. But, that fantastic optimism keeps him plugging along! ** See what's free at http://www.aol.com.
[TMIC] Grocery Delivery
MY APOLGIES, AKUA, FOR NOT KNOWING ALL THE FACTS. THERE WERE SEVERAL EMAILS REGARDING THIS TOPIC AND I WAS NOT ABLE TO READ THEM ALL. I WAS JUST TRYING TO HELP YOU WITH OPTIONS THAT UNKNOWINGLY WERE NOT AVAILABLE TO YOU. SANDY pulling foot out of mouth :) Yikes! I guess no one is listening! I outlined the contacts made in the building and with the organizations DESIGNATED to support the disabled. ** See what's free at http://www.aol.com.
Re: [TMIC] TM question from Sally!
Jenna Sally, My husband has had TM for almost 7 years and Jenna, I agree with you 100%. Lessen your burdens by hearing (or envisioning), waves crashing on the shore, the roar of a river or the trickling of a stream, leaves blowing in the wind, a watercolor sunset, the sound of a child's laughter, a friends compassionate voice. I continue to count my blessings as although it is difficult on me at times, it is much more difficult on my husband. I think, would I be upset if he took a jab w/o consulting me?I don't think so as I feel he knows what's best for his body and if he had adverse effects, he would figure out the next course of action. Just my humble opinion. Sandy Dear Sally, Being a caregiver is one of the hardest jobs you will have in your life. Being a caregiver for a husband makes it even harder. Do something for yourself today...even if it is only for a few minutes. Have a piece of chocolate, watch the leaves blowing in the wind, what works best for me is to get to some water and just watch it. Whether it is the ocean(my favorite), a river, small stream and even a fountain. Just picture your frustrations, burdens and problems flowing away. I know this might sound crazy, but it really does help me. Let us know how you are doing! You will be in my prayers today...Jenna
[TMIC] (no subject)
MERRY CHRISTMAS AND A HEALTHY HAPPY NEW YEAR TO ALL OF YOU! Terry Sandy Parker Warmed up to 56 degrees now; up from 32 the past few mornings! Chilly for SoCal and counting our blessings!
[TMIC] Bone Density
WE WERE TOLD AT THE BEGINNING OF TM by Terry's internist, that the worst thing would be the steroids and the list would be longer than his arm. So, he wanted to get him off it asap. We never saw that internist again and of the other 8-10 doctors he saw, they all failed to mention this and we "forgot" with all the other "crap" TM put us through. 1 1/2 year into it, he had a bone density test and it showed osteoporosis in his hips and was started on Fosamax. It now has led to osteonecrosis and hehadhis shoulder replaced last week due to it and his other shoulder will be replaced in two months.He also has osteonecrosis in the knee and ankle. Ironically, his hips have improved somewhat. Sometimes going through the trauma of a new disease, we are not always self-informed or we just don't "hear" everything the doc'stell us, as unfortunately was our case.Shouldn't itbe up to our doctor to monitor us and order a bone density test and keep ordering them to see if there is bone depletion to avoid the obvious if we are on steroids? Incidentally, it's one weeksince Terry had the replacement and he is doing PHENOMENAL! He's just amazing! Of course the first5 days were very difficult, but as of Friday night, he bounced back. He evenBBQ'd a steak last night and made some wonderful greenbeans with almonds. I have always been the souz chef and am glad to be back in that position after just a few meals that I had to prepare. Sparker Check out the new AOL. Most comprehensive set of free safety and security tools, free access to millions of high-quality videos from across the web, free AOL Mail and more.
Re: [TMIC] Rush Limbaugh/OT...or maybe not really OT
I am very far from being a bleeding heart liberal, unbeknownst to you. I am a conservative by nature. I won't bore you with the details. It is just IN MY OPINION, Limbaugh is a hypocrite when he can be excused for HIS ADDICTIONS, yet he can play on someone else's disability. That's where I draw the line. Incidentally, according to MJFox, hewas on MEDS during the commercial and he said he never knows where he will be while under the meds and therefore cannot dictate when and how his disease will effect him under the circumstances. This, (stem cell research), should be a bi-partisan issue, period. Both parties bash each other continually and stoop to all levels to get their parties votes. sandy my daughter was a Rush hater and a bleeding heart liberal also. About seven years ago I asked her to listen to him for 2 weeks. She said that she couldn't because of the way he talked about femnatzis.You called him a hypocrite and I don't understand how you say that epically if you don't listen.For some reason she decided to listen she has now completely turned around and became a republican. Again her roots are not believing in abortion,and epically not allowing the government to take you money. For many of us who have tmic children know how expensive it has been.
[TMIC] Terry's Surgery
Just a little update on my honey; the surgery yesterday seemed to go well and they replaced just the ball and not the socket. They had to do a lot of grinding of bones in order to do so – but apparently it’s less invasive and should last him forever. The surgeon wants to do the other shoulder in two months. Today, HE'S CRANKY AND WANTS TO COME HOME! What a surprise. You know how hospitals are? No place to rest or get healthy. Even though it's in his chart that he is paralyzed with Transverse Myelitis, the nurses haven't taken time to read it, (I had to tell the first two nurses as well as place a call last night), and it's led to some issues with the meds he needs to take. ARRGH! He has been w/o water somuch and it's not like he can get up and get his own!!! And now his shoulderis draining fluid and blood more than what they expected and it may be of concern.The surgery center was wonderful, but I’m not pleased, (nor is he), with the nursing care on his floor. At this point, he is supposed to be released tomorrow, but we have to confirm the approval for the bed/lift nursing in order for him to be released then.I know his routine well and can take care of him better at home, but with some difficulty. Thank you so very much for all your calls, emails, prayers, VISITS and thoughtfulness. I would write individually, but I am very far behind at work and need to play catch up. If you want to cheer him up, he’s a White Memorial in L. A., (323) 268-5000, Room 4513. Xoxo Sandy
[TMIC] Newbies, update, etc.
As Bob Cook said, when some of us first come on to the TM site, we are looking for answers. I had been lurking for a while before I submitted my first question years back, (OK, what 6 years now??) Anyway, you oldies will definitely remember Tom, Big Tom, who could be a smart ars. Well, he slammed me down with one of my first emails about herbs, milk thistle, in particularly. I was appalled at how he made me feel like a moron. The truth is, my theory about milk thistle was right and I stand by it. But, that isn't the point. It's just that HE made me feel like an idiot and I didn't belong and I almost unsubscribed. But, I found out I did belong, and EVERYBODY BELONGS!!! I don't write much these daze, (very busy with work/home/family), but my heart is with all of you that have been kind to me and Terry over the years and we are like old family regardless of what we talk about. Idle chatter is necessary in everyday life. Doesn't it sometimes help to keep us sane? Since I am now chatting, I'll update you on a couple of things. Terry has to have both shoulders replaced due to the osteonecrosis. He DOESNOT have it in his hips, as one Ortho had thought. He had surgery on both shoulders last year and they obviously haven't held up well thanks to the continued prednisone treatment. His first replacement is on the 23rd and he'll stay in the hospital a few days. The Doc has ordered a hospital bed, lift and nursing care, (yes, if Medicare will allow...), and 6 weeks of not using that arm in the least. But, he's looking forward to it as it always pops out of place and is chronically painful. We have to see how his recovery is on this one before we schedule the next. But, we are very optimistic! He's fantastic, otherwise, lost weight, happy and handsome!! So, this weekend will be our last travels for a bit. We are driving to June Lake in the Sierras for a 2 night stay and we’ll fish, take plenty of autumn photos, eat, drink and, and and... And then on to Yosemite for a night at The Ahwahnee Hotel. It's a magnificent trip and for those of you that haven't been to the Sierras, it is a wonderland of beauty! I'll take requests on sending you photos. You know how I like to share my pictures! Baby pictures, anyone??? The babies are fantastic, incidentally. Love them so very much! While I am writing this novel, I would like to comment on some of the topics of late: PAM - WRITE IN CAP ALL YOU LIKE! It's easier on some people. At least she is writing and sharing! ALTON - Your shoulders and driving – sounds like surgery - it's awful, isn't it?Terry slides intothe car, I put in his manual wheelchair and he must use a hand brake because his foot doesn't know how to move over to the brake, like some of you mentioned. I am so glad, tho, to hear your grandson is doing well! Bless you! JUDE - You have NEVER been a beetch! Not to me, at least! VICKI - I hope things are going better... EVERYONE, HOW IS COLE DOING? BARB, NONI, BOBBERINO, CINDY, (WHO DID I FORGET?), I'LL WRITE YOU ALL SON - HOPEFULLY!! And to therest of you that may still be reading this long email - miss you all and hope you and yours are doing well. I have a couple of issue, but very minor and ain't gonna complain! xoxo Sandy Parker
Re: [TMIC] Flying
Put your wings on and fly to Bob's BBQ, Jude! If it were that easy Terry gets uncomfortable flying and has difficulties if it's a long flight. In particular; getting to the bathroom. We usually just use our true kindness along with his disabilities and approach the friendliest flight attendent and ask to be upgraded so that he's in a row directly behind or in front of the bathroom. First class is great for coach fare! It happens 90% of the time! Also, he makes sure he has meds on board in case of discomfort. Since there is no smoking on board, MedMari is out of the question.. I have read that flying can be hard on we TM'ers. Have any of you experienced exaggerated pain or any other difficulties while in airplanes traveling in the wild blue yonder? Thinking about how to get to the Bar-B-Que! Jude Check out AOL.com today. Breaking news, video search, pictures, email and IM. All on demand. Always Free.
[TMIC] OT OT: MiSSING PERSON, RENEE (SOMES) FOX
http://www.texasequusearch.org/missing_persons/ReneeFox.pdf Latest flyer I've seen. Same pretty picture, but until we find her everyone will continue be be asked to PLEASE forward this. Again and again. She has got to be somewhere. TMIC FRIENDS AND MEMBERS: The above is from Renee Fox's family member and she and her family have been friends of ours for over 23 years. PLEASE pass this along to everyone on your email list. The family needs to know something, anything. You don't need to check it on "snopes", Iassure you it's no hoax Sandy Parker
[TMIC] Terry's 6 year anniversary
Today, St. Paddy's day, is the day Terry was DX'd 6 years ago. His progress has been great, considering he wasjust this side of a quad in those days and now has gained so much mobility. Of course, he has many side effects from steroids and other issues. But, healthy otherwise! In discussing it last night, he said it's been the worse 6 years of his life, yet he found out how strong we BOTH were emotionally. We rose to the occasion and that is what we will toast tonight over our dinner of corned beef and cabbage! Tomorrow we are going to Las Vegas for 3 days and celebrating our 14 year wedding anniversary. We will see Cirque du Soleil and savor every precious moment yet to come in our lives! Sandy
Re: [TMIC] Dana Reeve
I'm so very sad about Dana Reeve's death. It is indeed a sad day. She was such a wonderful role model and truly a hero. Sandy
[TMIC] Osteonecrosis
Thought it was time for another update on Terry as he has had a bit of problems in the past year. Those of you may remember that he had surgery on both shoulders and it seems his bones are continuing to deteriorate thanks to the long term continued use of steroids. When TM hit him in March of 2000, his internist said the first thing they needed to address is the long term affects of steroids and how to get him off them. He was at 150 mg daily decreased to 7 mg daily for the past 1 1/2 years + or -. He "crashes" if he goes any lower. The pay off has come and unfortunately it may be at a big expense. He now has fairly severe OsteoNecrosis, (his bones are "dying" as no blood supplyis getting to them),in both shoulders, right ankle and left femur. He goes for yet another MRI and CT on Wednesday. After his Orthopedic reviews the reports, he is contacting aProfessorat the Mayo Clinic for his advice. In my research, 90% of people with ON have it in their hips, (not Terry), and less than 3% have it 2 or more places. TM, now ON, both rare. You can't stop living your life but how much more can ones body take? You just try and try to be optimistic and hopeful, and then you're thrown back down into the corner. I know there are a few of you out there that have been on steroids for a long period of time and what are your side effects? Sorry it’s so long…(I could go on and on, too). I felt a need to share this with you as I don't feel my shoulders are as big as they use to be Sandy
[TMIC] Lyrica (Tequila)
That is the best med for Terry... Helps me a bit, too, (when he's suffering)... Sandy I DON'T KNOW WHY A BIT OF TEQUILA ON A DAILY BASIS WOULD NOT DO THE SAME THING,
[TMIC] Shellfish vs TM
Perhaps he has acquired an allergic reaction to that type of shellfish, which is not uncommon. Terry eats shellfish frequently without any adverse reactions, particularly if he kills the parasites with tequila Sandy ---BeginMessage--- Perhaps he has acquired an allergic reaction to that type of shellfish, which is not uncommon. Terry eats shellfish frequently without any adverse reactions, particularly if he kills the parasites with tequila Sandy ---End Message---
[TMIC] Survey..... Prednisone/bone density/surgery, etc.
I would like to take a short independent private survey regarding bone density as Terry has had two shoulder surgeries since the onset of TM and now is possibly going to have to have shoulder replacement. He also has issues with his knee, which may require surgery. We won't go into his hips right now... He's now down to 7 mg prednisone daily, Imuran and a myriad of other meds. HERE ARE MY QUESTIONS. PLEASE ELABORATE IF YOU CHOOSE: How many of you have had broken bones, surgeries, bone density issues, etc., and what do you attribute this to. Such as; medications, being ill-balanced, being not ambulatory OR? What meds? Prednisone, Imuran or ? You can email me privately and if anyonewould like, I can also emailthe responses and/orresults. Thank youvery much for your help! Sandy Parker
[TMIC] flu shot
Terry was ambivilent in the past to get the flu shot and it has been on ongoing debate here at the TM site. However,this year his Neuro highly recommended it. He got it a couple of weeks ago and hopefully will avoid the flu this year. I should get one too, but they are limited in our area to those that are older, younger or like Terry, with some "disease" or CRAP.
[TMIC] PREDNISONE/HEALTHY EATING
Sometimes under these circumstances, food is comfort. That's about all Terry had to look forward to in the beginning of this CRAP. So, everyone bought food to him at the hospital during his 2 months or so he was captive. Five years later, he's lost over 1/2, (20lbs)of the weight he'd gained and he's gained about 3/4 of his strength back! Sandy
