Hello Mindy, Physiotherapy DOES help..........A LOT!!! I know that for a fact. I was totally paralyzed in the beginning. Could only move my big toe on one foot, just a little when first in hospital. They took me for physiotherapy in the hospital within the first few days there. Took me in a wheelchair, showed me how to transfer, taught me how to sit up. I did a lot of little things even while lying in bed.
I was then put into Rehab section of hospital for the remaining 5 weeks in hospital (8 weeks or 2 months in total). During that time I was given exercises to do while in my room and taken for therapy every day wheeled down in the wheelchair. The physiotherapy gals taught me the basics of walking again which was extremely difficult. I did learn though and was kept as an outpatient for physio and returned to the hospital 3 times a week for continued therapy until month 7. At that time I had to go to physiotherapy outside the hospital which fortunately was also paid for by my health coverage through my work. I continued with that for another 5 months. During this time I relearned how to walk without canes etc. I was very very shaky and my balance was really bad. However, I went 3 times a week to this therapy. After the 5 months there that program was discontinued by the government health services. (things keep changing here all the time). By this time though I had been in some sort of physiotherapy for a year. During the time I was taking these physiotherapy classes I was also enrolled in a unique class held at the University of Calgary. This was introduced to me and my husband by the Occupational Therapist at the hospital I was in. This class is one I had to pay for. It ran for 3 months at a time, twice a week. I travelled there at first with my husband who would drive me there and either sit and wait for me or sit and read in the University hallways, or woud go for a walk. Eventually I got onto the Handicap buses and would go twice a week with that service. I started out doing all this in my wheelchair, then with my walker and eventually was practicing walking there with my cane. This particular program holds about 25 people at a time. It is overseen by a Kinesiologist at the University. That person has dedicated staff of 3 or so people and then kinesiology students each term volunteer to help with each client as well. The volunteer times are recorded each day and go toward some sort of credits for those students. Each client taking the course is assigned a student volunteer every day. These kids are great. They are interesting and interested young people who willingly help with keeping you on track with your exercises and being friendly and helpful at the same time. People in this program have had strokes, spinal cord injuries through falls, disease etc. Some people there had head injuries, MS etc. Each person's program is set up just for them after consulting with the Occupational therapist from the hospital, or from information from your doctor etc. It is a great program and you work as hard as you can at your own pace. I went to this program from Feb 2004 until May of 2005. I was in physiotherapy through the hospital and outside the hospital from Sept 2003 until Aug 2004. All in all a year and 8 months of a LOT of physiotherapy and exercises. Now you must know that prior to TM my idea of exercising was a 'good swift sit'. I hated exercise and still do. However, without all this physio and exercise I would have had atrophied muscles and usless limbs. I'm so grateful for all the teaching and help I had through the various therapies. Yes, it hurt, it was hard and painful etc etc. I was tired and ached and hurt more than if I hadn't done it. But it got my strength in my legs back. Today I walk without a cane in the house unless I am tired. I walk outside usually with a cane if going a short distance, with a walker for some longer distances or shopping if there is no cart available. I use the wheelchair only on rare occassions now if there is a long distance, a large shopping mall etc. I was affected at T8-T10. Idiopathic TM is how I was diagnosed. Bowel, bladder issues. I am still on lots of meds, 2400 mg Neurontin, 10 mg of Baclofen, 3 mg of Zanaflex each day. I still suffer pain, pins and needles, spasms 24/7. But without the exercise and therapy I would a lot worse off than I am now. Mindy, I know that I am very fortunate to be one of the walking wounded. I know that there are others with TM who are better off or worse off than I am. However, without therapy I would not be where I am. Hope this helps you. Show this letter to your doctors if you would like to. If it will help them to know therapy does help. It doesn't get rid of the pain but it helps. Sincerely, Heather Fraser in Calgary ----- Original Message ----- From: Lawrence King To: [email protected] Cc: Lawrence King Sent: Monday, October 01, 2007 8:39 PM Subject: [TMIC] officially TM Hi All, I have just been officially diagnosed with TM and my Neurologist has dismissed me as his patient. He does not expect my shivering sensation and Lhermitte’s sign to improve any further because I have passed the 6-month mark since the attack took place. I had hoped to talk him into some physical therapy even though I am walking wounded because I have found that walking any distance that would qualify as exercise causes acute pain. I’ve heard that swimming, stationary cycling or elliptical training could help restore some of my level of fitness but I don’t have the financial resources to pay for access to such equipment. His reason for excluding therapy was that he believed it would not help me recover from my forms of nerve pain. I am frustrated because as a result of TM I have lost my fitness, gained weight and am now experiencing borderline high blood pressure, a condition which could be reversed by losing 20 lbs and getting moving again (in a minimal impact fashion). I tried to see a pain specialist but when he found out what my causes and symptoms were he wouldn’t see me, said I should stick with my neuro for pain and my neuro is passing that responsibility off to my family practitioner. She is an excellent doctor and was my friend first before she became my physician (hate doing that cause it changes everything) but she still listens to me better than other doctors because she knows that I exist outside of her office and she knows what kind of person I am when I’m not sick. But this is her first venture into the world of TM. All the advice I got from the Neuro regarding my pain management was to tell my family doc. That she could triple my current dose of lyrica (75 mg 3 times a day) if needed but that I’d pay for the relief with medicine induced fatigue. My insurance does pay for the Lyrica and I’m sure they would pay for the High blood pressure meds but looks like my hope of getting a little subsidized fitness help is out of the question. Mindy the Artisan ------------------------------------------------------------------------------ No virus found in this incoming message. Checked by AVG Free Edition. Version: 7.5.488 / Virus Database: 269.13.36/1041 - Release Date: 10/1/2007 10:20 AM
