Re: [TMIC] Our Memories
Hi all,
My memory is very degraded, compared to where it was,
pre-TM(2007). Especially my short/medium term - between 5-days to 5-months
or so. I agree with Dalton's analogy strongly, as I to am highly trained
in the Engineering field..
It's tough sometimes..!
Glendon..
On Sunday, 27 January 2013, Janice Nichols wrote:
Thanks.I will definitely try it!
Janice
*From:* Betty Clark javascript:_e({}, 'cvml', 'xbeecla...@gmail.com');
*Sent:* Saturday, January 26, 2013 6:35 PM
*To:* Janice Nichols javascript:_e({}, 'cvml', 'jan...@centurytel.net');
*Cc:* heyjude48...@aol.com javascript:_e({}, 'cvml',
'heyjude48...@aol.com'); ; tmic-list@eskimo.com javascript:_e({},
'cvml', 'tmic-list@eskimo.com');
*Subject:* Re: [TMIC] Our Memories
If you've never seen them before, there are many on-line games on
gamehouse.com that can help with memory... my personal favorite is Super
TextTwist. It is a really good game you can play by yourself. You're given
six random letters and have to make as many 3-6 letter words as you can in
a given amount of time. They show you how many words of each number of
letters can be made and as long as you get at least one of the 6-letter
words, even if you don't get the rest, you pass on to the next series of
letters. As the clock runs out, it shows you the words you missed, so it
helps you learn words (and spelling). It's keeps a running score until you
fail to get a 6-letter word, so you play against yourself to see how high a
score you can achieve. Here's the link to Super TextTwist:
http://www.gamehouse.com/online-games/super-texttwist-online
Betty
On 1/26/2013 3:18 PM, Janice Nichols wrote:
I do have memory problems. Not just forgetting names of things, but
situations that happened a week ago, or the day after I see a movie,
I forget what it was.Eventually I think of it, but it is scary for my
husband to be talking about an incident, and I don’t remember it.
We have a card game we play with another couple that is called Quiddler.
You start with 3 cards and work up to having 10 cards dealt to you.
You make words out of your cards dealt to you or discarded by others. It
does make you think and it is very addicting. We love it.
Janice
*From:* heyjude48...@aol.com javascript:_e({}, 'cvml',
'heyjude48...@aol.com');
*Sent:* Friday, January 25, 2013 9:55 PM
*To:* tmic-list@eskimo.com javascript:_e({}, 'cvml',
'tmic-list@eskimo.com');
*Cc:* heyjude48...@aol.com javascript:_e({}, 'cvml',
'heyjude48...@aol.com');
*Subject:* [TMIC] Our Memories
*How is your memory these days? Have you experienced memory loss? If
so, how does it affect your life? Does your faulty memory affect your life
with your loved ones? *
**
*Memory loss has to do with the myelin sheath. The myelin sheath coats
the neurons in the spinal column to cement memories. TM destroys the
myelin sheath, so that our memories become clouded or we have no memories
at all.*
*The more we repeat things we need to remember, the thicker the layer of
myelin forms around the neurons. Brain games such as Scrabble, Seduki,
Boggle, Crossword Puzzles,and other games help us to reform the myelin
sheath...*
*Any thoughts on this?*
*Many hugs,*
*Jude*
--
respectfully,
*Glendon R. - (a.k.a Goat Dodders) *
*...Living with Transverse-Myelitis **since 2007,*
*in Brisbane, **Queensland, **Australia...
*
*email: **goatdodd...@gmail.com* goatdodd...@gmail.com
*web-blog: www.bloodywishfulthinking.blogspot.com *
*twitter: www.twitter.com/@GoatDodders *
*facebook: www.facebook.com/bloody.wishful.thinking *
Re: [TMIC] Our Memories
Janice I agree with you. I wil try the gamehouse web site. For years I have played game at www.pogo.com but it is always good to try new things. I will give it a try. Patti - Wisconsin On Sat, Jan 26, 2013 at 10:41 PM, Janice Nichols jan...@centurytel.netwrote: Thanks.I will definitely try it! Janice *From:* Betty Clark xbeecla...@gmail.com *Sent:* Saturday, January 26, 2013 6:35 PM *To:* Janice Nichols jan...@centurytel.net *Cc:* heyjude48...@aol.com ; tmic-list@eskimo.com *Subject:* Re: [TMIC] Our Memories If you've never seen them before, there are many on-line games on gamehouse.com that can help with memory... my personal favorite is Super TextTwist. It is a really good game you can play by yourself. You're given six random letters and have to make as many 3-6 letter words as you can in a given amount of time. They show you how many words of each number of letters can be made and as long as you get at least one of the 6-letter words, even if you don't get the rest, you pass on to the next series of letters. As the clock runs out, it shows you the words you missed, so it helps you learn words (and spelling). It's keeps a running score until you fail to get a 6-letter word, so you play against yourself to see how high a score you can achieve. Here's the link to Super TextTwist: http://www.gamehouse.com/online-games/super-texttwist-online Betty On 1/26/2013 3:18 PM, Janice Nichols wrote: I do have memory problems. Not just forgetting names of things, but situations that happened a week ago, or the day after I see a movie, I forget what it was.Eventually I think of it, but it is scary for my husband to be talking about an incident, and I don’t remember it. We have a card game we play with another couple that is called Quiddler. You start with 3 cards and work up to having 10 cards dealt to you. You make words out of your cards dealt to you or discarded by others. It does make you think and it is very addicting. We love it. Janice *From:* heyjude48...@aol.com *Sent:* Friday, January 25, 2013 9:55 PM *To:* tmic-list@eskimo.com *Cc:* heyjude48...@aol.com *Subject:* [TMIC] Our Memories *How is your memory these days? Have you experienced memory loss? If so, how does it affect your life? Does your faulty memory affect your life with your loved ones? * ** *Memory loss has to do with the myelin sheath. The myelin sheath coats the neurons in the spinal column to cement memories. TM destroys the myelin sheath, so that our memories become clouded or we have no memories at all.* *The more we repeat things we need to remember, the thicker the layer of myelin forms around the neurons. Brain games such as Scrabble, Seduki, Boggle, Crossword Puzzles,and other games help us to reform the myelin sheath...* *Any thoughts on this?* *Many hugs,* *Jude*
Re: [TMIC] Tonight, Today, Tomorrow
I don’t have more pain, but I can really get light headed, almost faint like. No fun. If I am going to have a drink – and I don’t drink often or have strong drinks – I really have to time my meds accordingly. Sometimes I just don’t have a drink. Janice From: Betty Clark Sent: Saturday, January 26, 2013 6:09 PM To: Janice Nichols Cc: Linda Egli ; tmic-list@eskimo.com Subject: Re: [TMIC] Tonight, Today, Tomorrow I don't know it affects you, but whenever I have any alcohol, it interferes with the effectiveness of my pain medication. I was never a lush - a glass of wine or a beer occasionally, or a mixed drink or champagne at parties and holidays - but ever since TM, I can't drink anything without the pain breaking through way sooner than it should. I tried several times thinking it was just a coincidence or I was overly fatigued prior to the drink, but it happens every time no matter what. Kinda puts a damper on celebrations now, but I've resigned myself to NOT imbibe - it just isn't worth the discomfort! Betty On 1/26/2013 2:41 PM, Janice Nichols wrote: Linda, I have a good friend who has tremors in his hands too.You are right, he says a good stiff drink makes a difference with his tremors! You are making the best of what TM has done to you and that is saying a lot!! Keep it up and keep responding. Janice From: Linda Egli Sent: Saturday, January 26, 2013 11:10 AM To: tmic-list@eskimo.com Subject: Re: [TMIC] Tonight, Today, Tomorrow I lost a wonderful job working in a local Public Health Department. I had worked there for 12 years loved every minute of the job. I went to the doctor with severe numbness loss of motor function, I then saw a neurologist after a 36 years as a nurse, my career was over. I left work that day was never able to return - very hard to deal with probably took 2-3 yeas to finally accept. I miss dancing; I was not the greatest but I enjoyed it. The main thing I miss now is only having partial use of my hands. About 2 years into TM I developed essential tremors in both hands (especially the right hand I am right handed). I take Primidone but it really doesn't help a lot. The main thing that helps the tremors is alcohol I can't drink every 4-6 hours, (but some days I try). Between the severe numbness tremors, using my hands can be difficult. I had always enjoyed sewing, needlework, crocheting, scrap booking, just anything involving arts crafts. I got rid of 95% of my craft sewing items because I could not stand not being able to use them (I had a whole room for crafts). I have found I can do jigsaw puzzles - the 3-D ones with larger foam pieces or a little crocheting if I keep it at 15 -20 minutes. I try to be positive as much as possible, knowing there are many people with much worse difficulty than me. On a good note, I have a wonderful supportive husband (helps with laundry tries to help cooking), good medical coverage, am able to afford someone in to help with the house 3 days weekly. Life is what you make of it. Linda E. -- From: john snodgrass mailto:jcs...@yahoo.com To: transverse myelitis mailto:tmic-list@eskimo.com Sent: Saturday, January 26, 2013 5:44 AM Subject: Re: [TMIC] Tonight, Today, Tomorrow i was a work-a-holic i sure miss that! -- From: mailto:heyjude48...@aol.com mailto:heyjude48...@aol.com To: tmic-list@eskimo.com Cc: heyjude48...@aol.com Sent: Friday, January 25, 2013 10:32 PM Subject: [TMIC] Tonight, Today, Tomorrow Hi everybody, Tonight, sitting here doing nothing, I'm wondering how Transverse Myelitis has affected your life. What has it stolen from you. Maybe everything, maybe nothing. I'm sure it is a personal thing. Some people choose to focus on life and believe that everything in life happens for a reason. I love life and refuse to let TM steal one minute. Life is made up of many joyous moments and I choose to focus on those moments, not TM. Because of my love for life, I refuse to feel sorry for myself. I've learned to be outspoken about my TM and I've become a demanding person because of TM. I hate that I've had to give up driving and remember how it used to feel heading down the highway with my arm resting on the window turned all the way down. Always remember that today could be potentially the best day of your life. Never take today for granted. When you wake up each morning remember to thank God for giving you another day. Always end the day with a positive thought. No matter how hard thing were, Tomorrow is a fresh opportunity to make it better. (unknown)
Re: [TMIC] Tonight, Today, Tomorrow
If there was a “butting in”, I would have been bannned from here long ago!! Janice From: heyjude48...@aol.com Sent: Saturday, January 26, 2013 6:35 PM To: xbeecla...@gmail.com Cc: tmic-list@eskimo.com Subject: Re: [TMIC] Tonight, Today, Tomorrow I hope it's ok to butt in, I haven't had a drink since I first tried one shortly after coming down with TM. It knocked me for a loop! Almost fell out of my chair, threw up for hours and said never again! I was never a big drinker, but that one drink did it for me! Jude In a message dated 1/26/2013 7:09:56 P.M. Eastern Standard Time, xbeecla...@gmail.com writes: I don't know it affects you, but whenever I have any alcohol, it interferes with the effectiveness of my pain medication. I was never a lush - a glass of wine or a beer occasionally, or a mixed drink or champagne at parties and holidays - but ever since TM, I can't drink anything without the pain breaking through way sooner than it should. I tried several times thinking it was just a coincidence or I was overly fatigued prior to the drink, but it happens every time no matter what. Kinda puts a damper on celebrations now, but I've resigned myself to NOT imbibe - it just isn't worth the discomfort! Betty On 1/26/2013 2:41 PM, Janice Nichols wrote: Linda, I have a good friend who has tremors in his hands too.You are right, he says a good stiff drink makes a difference with his tremors! You are making the best of what TM has done to you and that is saying a lot!!Keep it up and keep responding. Janice From: Linda Egli Sent: Saturday, January 26, 2013 11:10 AM To: tmic-list@eskimo.com Subject: Re: [TMIC] Tonight, Today, Tomorrow I lost a wonderful job working in a local Public Health Department. I had worked there for 12 years loved every minute of the job. I went to the doctor with severe numbness loss of motor function, I then saw a neurologist after a 36 years as a nurse, my career was over. I left work that day was never able to return - very hard to deal with probably took 2-3 yeas to finally accept. I miss dancing; I was not the greatest but I enjoyed it. The main thing I miss now is only having partial use of my hands. About 2 years into TM I developed essential tremors in both hands (especially the right hand I am right handed). I take Primidone but it really doesn't help a lot. The main thing that helps the tremors is alcohol I can't drink every 4-6 hours, (but some days I try). Between the severe numbness tremors, using my hands can be difficult. I had always enjoyed sewing, needlework, crocheting, scrap booking, just anything involving arts crafts. I got rid of 95% of my craft sewing items because I could not stand not being able to use them (I had a whole room for crafts). I have found I can do jigsaw puzzles - the 3-D ones with larger foam pieces or a little crocheting if I keep it at 15 -20 minutes. I try to be positive as much as possible, knowing there are many people with much worse difficulty than me. On a good note, I have a wonderful supportive husband (helps with laundry tries to help cooking), good medical coverage, am able to afford someone in to help with the house 3 days weekly. Life is what you make of it. Linda E. From: john snodgrass mailto:jcs...@yahoo.com To: transverse myelitis mailto:tmic-list@eskimo.com Sent: Saturday, January 26, 2013 5:44 AM Subject: Re: [TMIC] Tonight, Today, Tomorrow i was a work-a-holic i sure miss that! From: mailto:heyjude48...@aol.com mailto:heyjude48...@aol.com To: tmic-list@eskimo.com Cc: heyjude48...@aol.com Sent: Friday, January 25, 2013 10:32 PM Subject: [TMIC] Tonight, Today, Tomorrow Hi everybody, Tonight, sitting here doing nothing, I'm wondering how Transverse Myelitis has affected your life. What has it stolen from you. Maybe everything, maybe nothing. I'm sure it is a personal thing. Some people choose to focus on life and believe that everything in life happens for a reason. I love life and refuse to let TM steal one minute. Life is made up of many joyous moments and I choose to focus on those moments, not TM. Because of my love for life, I refuse to feel sorry for myself. I've learned to be outspoken about my TM and I've become a demanding person because of TM. I hate that I've had to give up driving and remember how it used to feel heading down the highway with my arm resting on the window turned all the way down. Always remember that today could be potentially the best day of your life. Never take today for granted. When you wake up each morning remember to thank God for giving you another day. Always end the day with a positive
RE: [TMIC] Re: Subscribe Shingles
I went into Johns Hopkins MC for something else, and while I was on the exam table, the examiner noticed the red spots of shingles on my side. However, they were in an area where TM had taken away my sense of touch, so I was unaware of the attack. I recommend this good planning ;-) Alton - Original Message - From: Deb Monteleone aiki...@optonline.net To: 'Pat Cooley' patticoole...@gmail.com, heyude48...@aol.com Cc: jan...@centurytel.net, tmic-list@eskimo.com Sent: Sat, 26 Jan 2013 18:07:22 - (UTC) Subject: RE: [TMIC] Re: Subscribe I just had Shingles this last Labor Day. Noticed raised bumps on my stomach, left of the midline, around to the spine. PA didn’t mention shingles, next day, Saturday went to the emergency room as my husband and I thought it was shingles and know the importance of getting the medication early. Thank God, I received the medicine even though it was at the end of the timeframe but it definitely lessened the attack. Felt some pain, woke me up a few nights, but between the early intervention and the nerve pain meds (Neurontin) I take, it wasn’t really that bad or long. Make it a great day,Deb From: Pat Cooley [mailto:patticoole...@gmail.com] Sent: Friday, January 25, 2013 10:20 AM To: heyjude48...@aol.com Cc: jan...@centurytel.net; tmic-list@eskimo.com Subject: Re: [TMIC] Re: Subscribe Jude I had shingles in 1992. I don't remember any pain as bad as that, even after going through labor 3 times. The pain I have with TM is child's play compared to shingles. Mine started with pain in the middle of my back going up my right shoulder. I thought it was from work as they had just installed a whole new area for my work station. Plus we had a lot going on at work and thought it was stress. Also my oldest daughter was causing strees and worry. After 4 days of pain that just got worse, when I out of the shower on the 5th day, I noticed red spots on my right side and knew right away what it was. The doctor confirmed it and gave me pain pills and some cream. It did get worse and for the next 4 days I was in a drug haze thankfully. Finally I was able to get up and eat. The pain off and on lasted for months, and the red marks turned into pox like blisters. It took months for it to go away,, but the redness lasted over a year. I know there is a shot to help make the shingles mild but by the time I soon the doc it was too late for the shot. So if anyone suspecs shingles, I say get to the doctor asap, it makes a difference. Pattti - WisconsinOn Thu, Jan 24, 2013 at 8:04 PM, heyjude48...@aol.com wrote:I didn't know there was a shot for shingles. My mother had them before she got cancer. From the way she described it, they were painful and itchy. Jude,Michigan In a message dated 1/24/2013 4:44:52 P.M. Eastern Standard Time, jan...@centurytel.net writes:For me, I do not believe it was stress that created TM. It struck at a great time for us. We were getting ready to travel, etc., after my husband had been retired for 4 months and really lookingforward to our new future.At 4 months of retirement, you-know-who struck and totally changed our lives. I had had a flu shot - but that was 3-4 months before TM.I had not been sick atall for a long time before TM either.I think it is like MS or any other disease like that - it hits when it hits.For the first 2 years after TM struck, my doc did not want me to get a flu shot. But now I get one yearly and he wants me too. Have also had a shingles shot and pnuemonia shot. No problems.Janice From:Robert PallSent: Wednesday, January 23, 2013 12:56 PMTo:heyjude48...@aol.com ; i.whiddett@sky.comCc:tmic-list@eskimo.comSubject: Re: [TMIC] Re: Subscribe There is a ton of information and personal stories,pictures etc at the T.M.I.C. Internet Club. The reason I like this site is that we talk about TM and the medicines and conditiions we have. I am not looking to make friends (although that is a plus). I just want to share information that may help us cope with this awful condition. As for me I have always believed that the cause of my TM was excess stress which probably caused my immune system to overreact to some minor illness like a summer cold.that being said no doctor can say what caused any of us to have TMI myself decided it was stresseveryone one of us thinks he knows the cause of TM ...but none of us do! All the best and happy to see this site in action once again! Rob in New Jersey -Original Message- From: Heyjude48458 heyjude48...@aol.com To: i.whiddett i.whidd...@sky.com Cc: tmic-list tmic-list@eskimo.com Sent: Wed, Jan 23, 2013 1:41 pm Subject: [TMIC] Re: SubscribeThanks Iris, I am so happy you are writing. I am really punishing myself to find topics for us to talk about. What can you think of that is pertinent toTM? Love you,Jude In a message dated 1/23/2013 7:20:44 A.M. Eastern Standard Time, i.whidd...@sky.com writes:Hi
Re: [TMIC] Tonight, Today, Tomorrow
Do any of you look at a page of information and spaces laid out in a grid or matrix fashion and just freeze up with befuddlement? It could be a bill or something from the IRS, for example. I don't know what I am seeing anymore. I can't find things on such a page and can't make out what it says or what I am supposed to get from it. What is it telling me? What am I supposed to do about it? What action am I supposed to take? I just look at it and lock up. DG Dalton Garis Flushing, Queens New York, USA (718) 838-0437 On 27 Jan 2013, at 11:43 AM, Janice Nichols jan...@centurytel.net wrote: If there was a “butting in”, I would have been bannned from here long ago!! Janice From: heyjude48...@aol.com Sent: Saturday, January 26, 2013 6:35 PM To: xbeecla...@gmail.com Cc: tmic-list@eskimo.com Subject: Re: [TMIC] Tonight, Today, Tomorrow I hope it's ok to butt in, I haven't had a drink since I first tried one shortly after coming down with TM. It knocked me for a loop! Almost fell out of my chair, threw up for hours and said never again! I was never a big drinker, but that one drink did it for me! Jude In a message dated 1/26/2013 7:09:56 P.M. Eastern Standard Time, xbeecla...@gmail.com writes: I don't know it affects you, but whenever I have any alcohol, it interferes with the effectiveness of my pain medication. I was never a lush - a glass of wine or a beer occasionally, or a mixed drink or champagne at parties and holidays - but ever since TM, I can't drink anything without the pain breaking through way sooner than it should. I tried several times thinking it was just a coincidence or I was overly fatiguedprior to the drink, but it happens every time no matter what. Kinda puts a damper on celebrations now, but I've resigned myself to NOT imbibe - it just isn't worth the discomfort! Betty On 1/26/2013 2:41 PM, Janice Nichols wrote: Linda, I have a good friend who has tremors in his hands too.You are right, he says a good stiff drink makes a difference with his tremors! You are making the best of what TM has done to you and that is saying a lot!!Keep it up and keep responding. Janice From: Linda Egli Sent: Saturday, January 26, 2013 11:10 AM To: tmic-list@eskimo.com Subject: Re: [TMIC] Tonight, Today, Tomorrow I lost a wonderful job working in a local Public Health Department. I had worked there for 12 years loved every minute of the job. I went to the doctor with severe numbness loss of motor function, I then saw a neurologist after a 36 years as a nurse, my career was over. I left work that day was never able to return - very hard to deal with probably took 2-3 yeas to finally accept. I miss dancing; I was not the greatest but I enjoyed it. The main thing I miss now is only having partial use of my hands. About 2 years into TM I developed essential tremors in both hands (especially the right hand I am right handed). I take Primidone but it really doesn't help a lot. The main thing that helps the tremors is alcohol I can't drink every 4-6 hours, (but some days I try). Between the severe numbness tremors, using my hands can be difficult. I had always enjoyed sewing, needlework, crocheting, scrap booking, just anything involving arts crafts. I got rid of 95% of my craft sewing items because I could not stand not being able to use them (I had a whole room for crafts). I have found I can do jigsaw puzzles - the 3-D ones with larger foam pieces or a little crocheting if I keep it at 15 -20 minutes. I try to be positive as much as possible, knowing there are many people with much worse difficulty than me. On a good note, I have a wonderful supportive husband (helps with laundry tries to help cooking), good medical coverage, am able to afford someone in to help with the house 3 days weekly. Life is what you make of it. Linda E. From: john snodgrass mailto:jcs...@yahoo.com To: transverse myelitis mailto:tmic-list@eskimo.com Sent: Saturday, January 26, 2013 5:44 AM Subject: Re: [TMIC] Tonight, Today, Tomorrow i was a work-a-holic i sure miss that! From: mailto:heyjude48...@aol.com mailto:heyjude48...@aol.com To: tmic-list@eskimo.com Cc: heyjude48...@aol.com Sent: Friday, January 25, 2013 10:32 PM Subject: [TMIC] Tonight, Today, Tomorrow Hi everybody, Tonight, sitting here doing nothing, I'm wondering how Transverse Myelitis has affected your life. What has it stolen from you. Maybe everything, maybe nothing. I'm sure it is a personal thing. Some people choose to focus on life and believe that everything in life happens for a reason. I love life and refuse to let TM steal one minute. Life is made up of many joyous moments and I choose to focus on those moments, not TM. Because of my love for life, I refuse to feel sorry for myself. I've learned to be outspoken about my TM and I've become a
Re: [TMIC] Tonight, Today, tomorrow
I was supposed to get married not long after TM hit so it was all cancelled. I have a very loving partner who I have been with since I was 16 years old, he's my rock and so supportive. We had to move from our home to a bungalow so when we did this we moved closer to my family and friends. Am not currently receiving PT but do my own exercises on my arms but they are very weak. I am waiting for an operation on my feet as I have severe foot drop and other deformities. Nikki Sent from my iPad On 26 Jan 2013, at 23:10, Janice Nichols jan...@centurytel.net wrote: I really hate that you were so young when TM hit.Are you married? Do have any family around you?Are you doing any physical therapy? Janice -Original Message- From: Nikki Macleod Sent: Saturday, January 26, 2013 2:43 PM To: tmic-list@eskimo.com Subject: [TMIC] Tonight, Today, tomorrow I feel as though TM has robbed me of all of my hopes and dreams. I'm 25 yrs old (23 when TM hit) and I had my dream job and had just graduated from uni. I miss my job terribly I worked in early years and it was my passion. I miss the interaction I had with the children, parents, colleagues, and basically the big wide world. I loved going to the gym but I am now paralysed from the shoulders down so this is now also a no go area. I loved the buzz it gave you and found it relaxing. I didn't actually know how much I'd miss driving, managing my toileting needs and how it had robbed me of all of my independence, confidence and self-esteem and send me spiralling into a pit of deep dark depression. But, I am slowly regaining my confidence, setting up fundraising days for my new wheelchair and I have started to write a book. TM will only beat you if you let it!! Sent from my iPad
Re: [TMIC] Tonight, Today, tomorrow
Nikki; This is about the foot-drop. I had this too. It was two years until I could wear shoes again. But even after short distances I am in danger of tripping because I can't keep my feet up. When it was really bad I remembered that my old pair of cowboy boots had a high heel and a leather upper that was stiff. I tried them on. The leather upper was stiff enough that my foot did not drop so much. And also, the high heel meant that even with the drop in the toe my foot was still level with the ground! I could walk again and not fall down! Borrow someone's cowboy boots and try them on. They could be a solution and a darn better-looking one than a foot brace! I now have six pair of hand-made M. L. Leddy Western Boots from Fort Worth, Texas. They look great and allow me to walk around a little once again! DG Dalton Garis Flushing, Queens New York, USA (718) 838-0437 On 27 Jan 2013, at 12:40 PM, Nikki Macleod nmacleo...@yahoo.co.uk wrote: I was supposed to get married not long after TM hit so it was all cancelled. I have a very loving partner who I have been with since I was 16 years old, he's my rock and so supportive. We had to move from our home to a bungalow so when we did this we moved closer to my family and friends. Am not currently receiving PT but do my own exercises on my arms but they are very weak. I am waiting for an operation on my feet as I have severe foot drop and other deformities. Nikki Sent from my iPad On 26 Jan 2013, at 23:10, Janice Nichols jan...@centurytel.net wrote: I really hate that you were so young when TM hit.Are you married? Do have any family around you?Are you doing any physical therapy? Janice -Original Message- From: Nikki Macleod Sent: Saturday, January 26, 2013 2:43 PM To: tmic-list@eskimo.com Subject: [TMIC] Tonight, Today, tomorrow I feel as though TM has robbed me of all of my hopes and dreams. I'm 25 yrs old (23 when TM hit) and I had my dream job and had just graduated from uni. I miss my job terribly I worked in early years and it was my passion. I miss the interaction I had with the children, parents, colleagues, and basically the big wide world. I loved going to the gym but I am now paralysed from the shoulders down so this is now also a no go area. I loved the buzz it gave you and found it relaxing. I didn't actually know how much I'd miss driving, managing my toileting needs and how it had robbed me of all of my independence, confidence and self-esteem and send me spiralling into a pit of deep dark depression. But, I am slowly regaining my confidence, setting up fundraising days for my new wheelchair and I have started to write a book. TM will only beat you if you let it!! Sent from my iPad
[TMIC] Re: Questions from a TM'er
Hi all, There are a few questions from another TM'er (to coin a word). Remember the, who? what? where? when? and why of your answers please. 1. Does anyone get massages? Do they help? 2. Are there any special utensils that you use if you can't use your hands easily? 3. Do any of you travel much? 4. Is there special clothing you wear? 5. Special shoes? 6. Does anyone play sports? 7. Do any of you have a special focus on life? 8. What are your favorite tv shows? 9. What medical supply companies do you use? Please include the links. 10. What kind of durable medical equipment do you have? Thanks, Jude
Re: [TMIC] Tonight, Today, tomorrow
I too have foot drop. If I do not wear my boots all of the time, my feet drop all the way to the bed. I think that my right ankle is broken, but the MRI only showed arthritis. Jude, Michigan In a message dated 1/27/2013 12:50:43 P.M. Eastern Standard Time, malugss...@me.com writes: Nikki; This is about the foot-drop. I had this too. It was two years until I could wear shoes again. But even after short distances I am in danger of tripping because I can't keep my feet up. When it was really bad I remembered that my old pair of cowboy boots had a high heel and a leather upper that was stiff. I tried them on. The leather upper was stiff enough that my foot did not drop so much. And also, the high heel meant that even with the drop in the toe my foot was still level with the ground! I could walk again and not fall down! Borrow someone's cowboy boots and try them on. They could be a solution and a darn better-looking one than a foot brace! I now have six pair of hand-made M. L. Leddy Western Boots from Fort Worth, Texas. They look great and allow me to walk around a little once again! DG Dalton Garis Flushing, Queens New York, USA (718) 838-0437 On 27 Jan 2013, at 12:40 PM, Nikki Macleod nmacleo...@yahoo.co.uk wrote: I was supposed to get married not long after TM hit so it was all cancelled. I have a very loving partner who I have been with since I was 16 years old, he's my rock and so supportive. We had to move from our home to a bungalow so when we did this we moved closer to my family and friends. Am not currently receiving PT but do my own exercises on my arms but they are very weak. I am waiting for an operation on my feet as I have severe foot drop and other deformities. Nikki Sent from my iPad On 26 Jan 2013, at 23:10, Janice Nichols jan...@centurytel.net wrote: I really hate that you were so young when TM hit. Are you married? Do have any family around you?Are you doing any physical therapy? Janice -Original Message- From: Nikki Macleod Sent: Saturday, January 26, 2013 2:43 PM To: tmic-list@eskimo.com Subject: [TMIC] Tonight, Today, tomorrow I feel as though TM has robbed me of all of my hopes and dreams. I'm 25 yrs old (23 when TM hit) and I had my dream job and had just graduated from uni. I miss my job terribly I worked in early years and it was my passion. I miss the interaction I had with the children, parents, colleagues, and basically the big wide world. I loved going to the gym but I am now paralysed from the shoulders down so this is now also a no go area. I loved the buzz it gave you and found it relaxing. I didn't actually know how much I'd miss driving, managing my toileting needs and how it had robbed me of all of my independence, confidence and self-esteem and send me spiralling into a pit of deep dark depression. But, I am slowly regaining my confidence, setting up fundraising days for my new wheelchair and I have started to write a book. TM will only beat you if you let it!! Sent from my iPad
Re: [TMIC] Re: Subscribe Shingles
ALTON THATS THE FIRST TIME I HEARD OG IT BEING A PHYSICAL BLESSING..LOL From: a-ry...@comcast.net a-ry...@comcast.net To: Deb Monteleone aiki...@optonline.net Cc: 'Pat Cooley' patticoole...@gmail.com; heyjude48...@aol.com; jan...@centurytel.net; tmic-list@eskimo.com Sent: Sunday, January 27, 2013 12:08 PM Subject: RE: [TMIC] Re: Subscribe Shingles I went into Johns Hopkins MC for something else, and while I was on the exam table, the examiner noticed the red spots of shingles on my side. However, they were in an area where TM had taken away my sense of touch, so I was unaware of the attack. I recommend this good planning ;-) Alton - Original Message - From: Deb Monteleone aiki...@optonline.net To: 'Pat Cooley' patticoole...@gmail.com, heyude48...@aol.com Cc: jan...@centurytel.net, tmic-list@eskimo.com Sent: Sat, 26 Jan 2013 18:07:22 - (UTC) Subject: RE: [TMIC] Re: Subscribe I just had Shingles this last Labor Day. Noticed raised bumps on my stomach, left of the midline, around to the spine. PA didn’t mention shingles, next day, Saturday went to the emergency room as my husband and I thought it was shingles and know the importance of getting the medication early. Thank God, I received the medicine even though it was at the end of the timeframe but it definitely lessened the attack. Felt some pain, woke me up a few nights, but between the early intervention and the nerve pain meds (Neurontin) I take, it wasn’t really that bad or long. Make it a great day, Deb From:Pat Cooley [mailto:patticoole...@gmail.com] Sent: Friday, January 25, 2013 10:20 AM To: heyjude48...@aol.com Cc: jan...@centurytel.net; tmic-list@eskimo.com Subject: Re: [TMIC] Re: Subscribe Jude I had shingles in 1992. I don't remember any pain as bad as that, even after going through labor 3 times. The pain I have with TM is child's play compared to shingles. Mine started with pain in the middle of my back going up my right shoulder. I thought it was from work as they had just installed a whole new area for my work station. Plus we had a lot going on at work and thought it was stress. Also my oldest daughter was causing strees and worry. After 4 days of pain that just got worse, when I out of the shower on the 5th day, I noticed red spots on my right side and knew right away what it was. The doctor confirmed it and gave me pain pills and some cream. It did get worse and for the next 4 days I was in a drug haze thankfully. Finally I was able to get up and eat. The pain off and on lasted for months, and the red marks turned into pox like blisters. It took months for it to go away,, but the redness lasted over a year. I know there is a shot to help make the shingles mild but by the time I soon the doc it was too late for the shot. So if anyone suspecs shingles, I say get to the doctor asap, it makes a difference. Pattti - Wisconsin On Thu, Jan 24, 2013 at 8:04 PM, heyjude48...@aol.com wrote: I didn't know there was a shot for shingles. My mother had them before she got cancer. From the way she described it, they were painful and itchy. Jude, Michigan In a message dated 1/24/2013 4:44:52 P.M. Eastern Standard Time, jan...@centurytel.net writes: For me, I do not believe it was stress that created TM. It struck at a great time for us. We were getting ready to travel, etc., after my husband had been retired for 4 months and really looking forward to our new future. At 4 months of retirement, you-know-who struck and totally changed our lives. I had had a flu shot - but that was 3-4 months before TM. I had not been sick at all for a long time before TM either. I think it is like MS or any other disease like that - it hits when it hits. For the first 2 years after TM struck, my doc did not want me to get a flu shot. But now I get one yearly and he wants me too. Have also had a shingles shot and pnuemonia shot. No problems. Janice From:Robert Pall Sent:Wednesday, January 23, 2013 12:56 PM To:heyjude48...@aol.com ; i.whidd...@sky.com Cc:tmic-list@eskimo.com Subject:Re: [TMIC] Re: Subscribe There is a ton of information and personal stories,pictures etc at the T.M.I.C. Internet Club. The reason I like this site is that we talk about TM and the medicines and conditiions we have. I am not looking to make friends (although that is a plus). I just want to share information that may help us cope with this awful condition. As for me I have always believed that the cause of my TM was excess stress which probably caused my immune system to overreact to some minor illness like a summer cold.that being said no doctor can say what caused any of us to have TMI myself decided it was stresseveryone one of us thinks he knows the cause of TM ...but none of us do! All the best and happy to see this site in action once again! Rob in New Jersey -Original Message- From: Heyjude48458
Re: [TMIC] Tonight, Today, tomorrow
I wear my foot brace for foot-drop and orthodics in my shoes. Sometimes I wear boots! Anything is better to me than being so unbalanced, and tripping all the time! On Jan 27, 2013, at 10:50 AM, Dalton Garis wrote: Nikki; This is about the foot-drop. I had this too. It was two years until I could wear shoes again. But even after short distances I am in danger of tripping because I can't keep my feet up. When it was really bad I remembered that my old pair of cowboy boots had a high heel and a leather upper that was stiff. I tried them on. The leather upper was stiff enough that my foot did not drop so much. And also, the high heel meant that even with the drop in the toe my foot was still level with the ground! I could walk again and not fall down! Borrow someone's cowboy boots and try them on. They could be a solution and a darn better-looking one than a foot brace! I now have six pair of hand-made M. L. Leddy Western Boots from Fort Worth, Texas. They look great and allow me to walk around a little once again! DG Dalton Garis Flushing, Queens New York, USA (718) 838-0437 On 27 Jan 2013, at 12:40 PM, Nikki Macleod nmacleo...@yahoo.co.uk wrote: I was supposed to get married not long after TM hit so it was all cancelled. I have a very loving partner who I have been with since I was 16 years old, he's my rock and so supportive. We had to move from our home to a bungalow so when we did this we moved closer to my family and friends. Am not currently receiving PT but do my own exercises on my arms but they are very weak. I am waiting for an operation on my feet as I have severe foot drop and other deformities. Nikki Sent from my iPad On 26 Jan 2013, at 23:10, Janice Nichols jan...@centurytel.net wrote: I really hate that you were so young when TM hit.Are you married? Do have any family around you?Are you doing any physical therapy? Janice -Original Message- From: Nikki Macleod Sent: Saturday, January 26, 2013 2:43 PM To: tmic-list@eskimo.com Subject: [TMIC] Tonight, Today, tomorrow I feel as though TM has robbed me of all of my hopes and dreams. I'm 25 yrs old (23 when TM hit) and I had my dream job and had just graduated from uni. I miss my job terribly I worked in early years and it was my passion. I miss the interaction I had with the children, parents, colleagues, and basically the big wide world. I loved going to the gym but I am now paralysed from the shoulders down so this is now also a no go area. I loved the buzz it gave you and found it relaxing. I didn't actually know how much I'd miss driving, managing my toileting needs and how it had robbed me of all of my independence, confidence and self-esteem and send me spiralling into a pit of deep dark depression. But, I am slowly regaining my confidence, setting up fundraising days for my new wheelchair and I have started to write a book. TM will only beat you if you let it!! Sent from my iPad
[TMIC] What's Been Stolen . . .
I haven't actually thought about the answer to this question - because like many of you - it has the potential to make me angry, depressed, frustrated, and the list goes on. I am one of the walking wounded - I can and do work, some weeks 38 hours and others 20 - depends on fatigue, pain - you know the factors. What I enjoy reading and learning from all of you is that I am not alone. That the cold feet, hot feet, burning feet, banding, the inability to concentrate, or have a drink, the sexual issues, the bladder and bowel issues, the fatigue, the pain, the never knowing whether I need a sweater or a fan, all of those things and more - I am not alone. Even though I am a walking wounded, I am not alone. And for that I so appreciate all of you. I appreciate that no topic is off limits, whether it is about intercourse or digital elimination, or just a plain bad day, or hallelujah even a good day - I am not alone. Even when I think I am, I am not - and thank you all so much for that. Yesterday where I live it was +1 celcius, today it is -20 celcius with a fierce wind chill making it feel like -29 celcius. That 30 degree temperature change plays havoc on my legs - and that is an understatement. Today is a lay low and stay warm day - trust me! Janet attachment: j_dunn.vcf
Re: [TMIC] Tonight, Today, tomorrow
I am so sorry.At least you have someone to be really close to.When you have the foot surgery, please let us know how you are doing. Janice -Original Message- From: Nikki Macleod Sent: Sunday, January 27, 2013 11:40 AM To: Janice Nichols Cc: tmic-list@eskimo.com Subject: Re: [TMIC] Tonight, Today, tomorrow I was supposed to get married not long after TM hit so it was all cancelled. I have a very loving partner who I have been with since I was 16 years old, he's my rock and so supportive. We had to move from our home to a bungalow so when we did this we moved closer to my family and friends. Am not currently receiving PT but do my own exercises on my arms but they are very weak. I am waiting for an operation on my feet as I have severe foot drop and other deformities. Nikki Sent from my iPad On 26 Jan 2013, at 23:10, Janice Nichols jan...@centurytel.net wrote: I really hate that you were so young when TM hit.Are you married? Do have any family around you?Are you doing any physical therapy? Janice -Original Message- From: Nikki Macleod Sent: Saturday, January 26, 2013 2:43 PM To: tmic-list@eskimo.com Subject: [TMIC] Tonight, Today, tomorrow I feel as though TM has robbed me of all of my hopes and dreams. I'm 25 yrs old (23 when TM hit) and I had my dream job and had just graduated from uni. I miss my job terribly I worked in early years and it was my passion. I miss the interaction I had with the children, parents, colleagues, and basically the big wide world. I loved going to the gym but I am now paralysed from the shoulders down so this is now also a no go area. I loved the buzz it gave you and found it relaxing. I didn't actually know how much I'd miss driving, managing my toileting needs and how it had robbed me of all of my independence, confidence and self-esteem and send me spiralling into a pit of deep dark depression. But, I am slowly regaining my confidence, setting up fundraising days for my new wheelchair and I have started to write a book. TM will only beat you if you let it!! Sent from my iPad
Re: [TMIC] What's Been Stolen . . .
Janet, you say you work. What do you do? I am s glad that I was retired when TM hit. Don’t think I could work with TM. Janice From: Janet Dunn Sent: Sunday, January 27, 2013 2:50 PM To: tmic-list@eskimo.com Subject: [TMIC] What's Been Stolen . . . I haven't actually thought about the answer to this question - because like many of you - it has the potential to make me angry, depressed, frustrated, and the list goes on. I am one of the walking wounded - I can and do work, some weeks 38 hours and others 20 - depends on fatigue, pain - you know the factors. What I enjoy reading and learning from all of you is that I am not alone. That the cold feet, hot feet, burning feet, banding, the inability to concentrate, or have a drink, the sexual issues, the bladder and bowel issues, the fatigue, the pain, the never knowing whether I need a sweater or a fan, all of those things and more - I am not alone. Even though I am a walking wounded, I am not alone. And for that I so appreciate all of you. I appreciate that no topic is off limits, whether it is about intercourse or digital elimination, or just a plain bad day, or hallelujah even a good day - I am not alone. Even when I think I am, I am not - and thank you all so much for that. Yesterday where I live it was +1 celcius, today it is -20 celcius with a fierce wind chill making it feel like -29 celcius. That 30 degree temperature change plays havoc on my legs - and that is an understatement. Today is a lay low and stay warm day - trust me! Janet
