Went to physical therapy today and it was weird. I asked, “How do I strengthen muscles when the ataxia is a progressive, degenerative disease that affects my muscles?” I was told that exercising helps build new nerves, blood vessels etc in the existing muscles. Somehow this doesn’t make sense to me. My ataxia is affecting my left side right now. When I try to do exercises, core area, I can’t feel anything on my left side. The only way I know anything is happening is that my right side feels* it. When I try to do exercises with left leg some are so difficult that the whole top of my body, from the waist up, shakes and jerks when I try to do them. I am physically and mentally exhausted when I get out of there and it takes me one to two days to recover where I can do basic things again. Does anyone else go to physical therapy, have you been in physical therapy and did it help or what was your experience there.
The best thing I discovered was passive training or Forced Exercise stimulates other areas of the brain that control involuntary movement such as tremor etc which voluntary exercise (you exercising under you own steam) does not.
I got a set of exercise pedals which enables me to pedal faster than I could myself as did have the co-ordination for the fluent movement of pedalling. I have virtually no tremor and have better control of the muscle spasms due to the dystonia element of my condition.
The theory was tested on patients with Parkinsons who also got a reduction in tremor and other symptoms. I do other exercises too such as stretching etc and playing on wii fit and I've found my ability to do these have improved after I had been doing the passive training for a while.
I followed Kati's advice and use my wii fit plus at least 4 days a week.. and passive pedalling when I really motivate myself. It keeps me going and would certainly recommend it.
I had a terrible time with physical therapy. It knocked me down and left me in bed for days. However exercising on my own, walking has been great. I started off slow and built up everyday. You have to stay with it and be consistent. I slide downhill fast without exercising and staying busy but yet getting the rest that I need. I usually exercise at the end of the day, otherwise I would not be able to do any thing else.
Exercise has been the most important part of me improving.
I thing just regular practic, never be thought too much...its like a retune life.....enjoy
Dear PG, your frustration and bewilderment sound so like my own. I’d already had multiple disabilities due to a brain tumor, when “simple” brain shunt surgery for hydrocephalus turned into a one week NeuroICU Hosp. stay, followed by a 3 wk. Rehab inpt. stay. Oh, how I hated those PT’s and esp. OTs and Speech Therapists. Over time, as I continued Outpt Rehab intermittently (sometimes I took a rest), I learned I was miraculously getting better. Just as they said, the shakes and jerking calmed little by little. I still go because they insist I will get even better, after 5 years of it. I still takes rest periods e.g. 6 months on, 3-4 mos. rest, then back. My advice: ask your PT to map out on paper - like a map of roads- where they are taking you. What are their goals for you? They may not want to heighten your hopes or expectations, but you must convince them you still are of strong mind and heart. Once you can visualize your progress, you will becomes less confused. The fact that you wrote asking for help says a lot about your inner strength. Try not to be too discouraged. This forum helps greatly. I still hate it, but I have done 3 things on my own time that may help you: 1. MEDITATION- it works! 2. DO SOMETHING FUN THAT YOU LOVE WITH THOSE AWFUL SPASTIC HANDS: Take an art or jewelry making class; paint your nails; knit; or play an instrument! I picked up guitar again after 40 years. I’m awful at the L fingering, but I laugh rather than cry, now; and 3. I SWIM every day I can or feel up to it. The water is a calming, therapeutic miracle. My PT gave me exercises to do with or without water weights. I do them to the Beatles, Sheryl Crowe or whatever fits my mood. Finally, I send my rather weak and spastic hugs to you, PG, and to all of us: Be only around compassionate people, who can make you laugh. Life is short. Ataxia is hateful to manage. But, be assured someone (maybe your PT) needs YOU, your advice and your love. On better days, when you can, helps to get out of your tears or anger. You WILL get better. You will! XO
Can someone tell me about the pedal thing in the replies and where you get one?
Also Physical Therapist has decided that Friday is my last day. He is going to send me home with exercises. He said if I get worse come back. I am thankful for all the information everyone sent me. I don't know what I would do. I don't have anyone to talk to about this "ataxia" and it is very frustrating. I am going back to my regular doctor and ask about my left foot and see if she has any ideas. I can tell that my left leg is getting worse and I get worn out easier just doing everyday things. I am going back to neuro next week and am making a list of questions for that visit. I am trying to get a letter with diagnosis so I can possibly get some help for Soc Sec. Thanks everyone.
Dear PG,
As a PT I think you doing well. The thing you are looking for is called a restorator you caan buy a cheap one at Dr. Leonard's catalog for about 10 American dollars.
Jerry
PG said:
Can someone tell me about the pedal thing in the replies and where you get one?
Also Physical Therapist has decided that Friday is my last day. He is going to send me home with exercises. He said if I get worse come back. I am thankful for all the information everyone sent me. I don't know what I would do. I don't have anyone to talk to about this "ataxia" and it is very frustrating. I am going back to my regular doctor and ask about my left foot and see if she has any ideas. I can tell that my left leg is getting worse and I get worn out easier just doing everyday things. I am going back to neuro next week and am making a list of questions for that visit. I am trying to get a letter with diagnosis so I can possibly get some help for Soc Sec. Thanks everyone.
Yes, I've done physical therapy a couple times and it has helped me. My insurance will only pay for 15 visits per year. So once these are exhausted, my pt sends exercises home with me to continue to do. I find walking (I use a cane or trekking poles) to be good exercise. I also do floor exercises with resistance bands and light hand weights/ankle weights, as well as exercises for strength and balance. I have a treadmill in my home to walk on, as I can hold on. I have a balance board, wobble board, twister board and peddler (bought them on Amazon). I have a ledge between my kitchen and family room that I can hold onto when using the boards. I sit in a chair to use the peddler. Anything you can do (safely) to keep active should help. ;o)
I was in a pretty bad way the first time that I went to PT; I was in a coma for 3 weeks, I lost a lot of muscle mass (I went from a medium to an extra small petite), and I needed to re-learn all of the basics, including walking, talking, breathing independently, writing, etc.
Every single time that I went (initially daily then to twice a week then to 1X/week), it was a huge challenge for me, and I found it discouraging how easily re-learning came to some when I found it challenging to simply roll-over without falling off of a platform. It seemed daunting, but I did it. I’m nowhere near 100%, but it’s empowering to look back and see how far I’ve come.
I had very little range of motion with my arms, so I worked a lot on the arm bike to build up my muscle mass and arm movement. It was kind of like the passive trainer that Kati refers to though no motor and it’s for the arms. This might be considered OT; not sure.
A different thing that helped me to build back my muscle mass was the Nu-Step…it allows you to sit while working your arms and legs - and it has a cardio element as a bonus.
As others have said, I’d definitely let your PT know how you’re feeling about your therapy. Maybe there are some different ways to achieve the same goal, like adding Velcro straps to the handles and pedals of the Nu-Step or Passive Trainer.
The thing that you mentioned about building new nerves is beyond me, but I’m on board regarding trying to build muscle mass or even to keep moving. If I hadn’t been somewhat fit before going into a coma, I’m really not sure how frail I’d be, and therefore need extra nursing and care to get back to even sub-par level.
I'm not giving up but tomorrow PT is sending me home with things to do and said no need to come back unless I get worse? I ordered one of those peddler things where you sit in chair and peddle it like a bike. Should be here next week and that will be good. Have a treadmill but have not got the nerve yet to get on it. Going to rest up and give that a try, very slowly! I can tell I have to keep moving but PT is wiping me out. They don't really know what to do with me. I think if I go at my pace and work on home exercises and then I'll rest when I get tired so I don't get totally wiped out. Thanks for info.
Glitter on Butterflies said:
I was in a pretty bad way the first time that I went to PT; I was in a coma for 3 weeks, I lost a lot of muscle mass (I went from a medium to an extra small petite), and I needed to re-learn all of the basics, including walking, talking, breathing independently, writing, etc.
Every single time that I went (initially daily then to twice a week then to 1X/week), it was a huge challenge for me, and I found it discouraging how easily re-learning came to some when I found it challenging to simply roll-over without falling off of a platform. It seemed daunting, but I did it. I'm nowhere near 100%, but it's empowering to look back and see how far I've come.
I had very little range of motion with my arms, so I worked a lot on the arm bike to build up my muscle mass and arm movement. It was kind of like the passive trainer that Kati refers to though no motor and it's for the arms. This might be considered OT; not sure.
A different thing that helped me to build back my muscle mass was the Nu-Step...it allows you to sit while working your arms and legs - and it has a cardio element as a bonus.
As others have said, I'd definitely let your PT know how you're feeling about your therapy. Maybe there are some different ways to achieve the same goal, like adding Velcro straps to the handles and pedals of the Nu-Step or Passive Trainer.
The thing that you mentioned about building new nerves is beyond me, but I'm on board regarding trying to build muscle mass or even to keep moving. If I hadn't been somewhat fit before going into a coma, I'm really not sure how frail I'd be, and therefore need extra nursing and care to get back to even sub-par level.