----- Original Message ----- From: Heather & Pieter To: sal r Sent: Monday, October 29, 2007 2:42 PM Subject: Re: [TMIC] wobble boards
Hi Sal, I did use a wobble board but it was not for quite a while after I was taking PT. One of the first things I had to do was to use a full length mirror, put a bed pillow on the floor in front of the mirror (the mirror is to see our posture), pull wheelchair up to pillow, use support (in my case a tall dresser by the mirror and the end of the sleigh bed) to help balance yourself. Amazingly this is not easy at first. When I was trying to build some strength in my legs I was in PT and one of the things I did was ride on one a recumbant bike. I eventually graduated to a stationary bike but had to have helpers get me up there in the beginning. I could not ride for very long at first then worked up to about 15 to 20 minutes. This riding on the stationary bike took me about 18 months to reach that point. I also had to sit on the edge of a flat hard bed like piece of equipment (at PT - which was at a program run at our local Calgary University) and practice standing up then sitting down, first using my wheelchair or walker for support. I eventually gained enough strength in my legs to stand and sit without any support. I HAD TO remember to always have my knees over my toes when doing this exercise. This was hard to remember until I forced myself to watch my feet and knees all the time. Currently (4 years now with TM) I still have to look at my knees and toes from time to time to make sure that is what I'm doing. My right leg is my 'weak' leg. I was told by both the PT in the hospital (where I was for 2 months with another 5 months as an outpatient), and with a private PT for another 3 months then also the 18 months with the special program at the University NOT to refer to my 'weak' leg as my 'BAD' leg. You know it works. If we think of our 'weak' leg as a 'BAD' leg or both legs as 'BAD' there is some sort of psycological thing that goes on. Not sure what it is but once I started to think of my limbs as 'weak' and not 'BAD' it seemed easier. Silly isn't it??? I am going to attach here somethig I wrote about a month ago to the group as I'm not sure if you saw it or not. Sort of show the exercise regime I had for over a year and a half when I first had TM. I also am going to see my 'physiatrist' in a couple of months and need to discuss with him some problems I am currently having with the weakness in my leg and my hip and knee and ankle. My right leg will just 'slllliiiide' away from me if I'm wearing slippery soles on my slippers or just wearing socks. I will go to stand and 'ooops' there is my right leg all slid out to the right and I have to physically pull it back to the knee over toe position before I stand. Sometimes I have forgotten to look and 'ouch' it 'huuurrrts' to try and stand that way, besides being impossible. My right foot will automatically turn out while I'm standing and I don't always notice it. My right foot will also 'STAY PLANTED' to the floor sometimes when I go to turn and take a step, and this has almost 'PLANTED ME' on the floor or another person or furniture because I am never 'notified' by my brain that it is going to happen until I realize it is 'STUCK' like glue there on that piece of hardwood, tile or carpet and I'm turned or turning or trying to take a step. What I wrote a while ago. 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
