I don't know about others but since I recently received my diagnosis I have been trying to "look" like nothing is wrong with me, as far as walking is going. I think it is the shock of dealing with the diagnosis. The last two weeks I walk with a limp on my left side and nothing seems to help at this point. I put my purse on my right shoulder to balance me out so it is not so obvious. I just feel like the therapy person I have doesn't take this seriously. I asked her this morning what I could do to try not to limp on the left side. She said I've seen you walk and you are ok. That upset me. I am not a wimp and have always been a very active person. I get the feeling that she doesn't think there is really anything that "wrong" with me. She kept leaving during my therapy session while I was trying to do the exercises therefore she didn’t see how I struggled to do the things she was having me do. I did the exercises and didn’t give up but it kicks my tail doing this. I honestly feel worse after she gets through with me. At first it took me two days to recoup when I went to therapy. I asked my doctor about it and the therapy people went down on the amount of weights they were putting on my left leg and it only takes about a day to recoup now. I told her I had almost fell twice in the last 4-5 days but managed to catch a hold of something. She just looked at me like I was nuts. After therapy I was tired. Therapist decided I needed to go outside in the parking lot and walk all around on the concrete parking lot, on flat surface, up the steep incline toward the top of the hill, then she decided I needed to step over the curb and get in the grass area and walk up the sloped hill. When she told me to do that I just froze at the curb. I told her I thought that was not a good idea but she insisted. I nearly fell, lost my balance numerous times, then she decided I needed to turn around and walk back down the hill through the same mess. There were rocks, holes and trash. It was a hazard for me to do that. I almost turned my ankle in a big hole that had grass growing up in it. It was hard to tell if it was just grass or a hole. I had to look at my feet the whole time she had me outside because I knew I would fall. She put one of those belts around me and when I would nearly fall I would reach for her to steady myself but she just held on to the belt. I was really tired from the therapy and couldn’t believe she would have me do that. I think that is nuts myself. I am really upset about this and I have to go back tomorrow at 10:00 and work with her again. I dare say that I am not putting up with this anymore. Even if I was a stable walking person I would have never walked through that grass with all that trash, rocks and crud in it. That is crazy. Anyone else had your therapist thing you are just fine?
Sounds ridiculous! Every physiotherapist I've had leaves me to do things by myself while they see other patients, but I've never heard a story like this. Sorry this is happening and I hope this can be resolved in some way, maybe another chat with your doctor as it seems that some things changed after you spoke to him like the amount of weights you were initially using. Get your doctor to speak to them about their approach with you. Unfortunately (I say this kind of tongue I cheek), when you present well they don't always get how difficult things are, this happens to me all the time and I have to stress how badly my day to day functioning gets!!!!
What a story! Your doctor needs to know about her so you can get another therapist. There are so many good ones out there for you to use. I don’t think that she knows about ataxia and how to work with it. My doctor recommended the therapist that I went to for my back and when he watched me walk, he questioned me and gave me new excerises for ataxia. I defentily would talk to your doctor and now!
My impression is that very few health professionals heard of or treated ataxia and assume that at least half of what we say is neurotic, imagined or from the Moon My physio also left the room after he showed me what to do. But he was kind and we had a good rapport even though he had no idea what to do with me and treated me like a stroke victim.. You should probably switch physio's to someone with whom you can communicate better but remember: No pain, no gain. Sounds like she had you doing tough stuff and you did it. Bravo!!!!
I have a physical therapist who specializes in neurological issues. She has never treated me as you described above. I think you need a new physical therapist that you can develop a rapport with. It’s important that you trust your therapist and that your therapist listen to your needs and concerns. Good luck!
Kathy
My therapist shared that he had worked with Ataxia patients before and acknowledged his goal was to strengthen my muscles in my legs. However we worked on this in the therapy room, not outdoors. I sat on a bench and lifted weights with my feet. I went up and down on my toes and heels, I squeezed a ball between my thighs, and pushed weight away with rubber bands/.I also worked on arm exercises. All to preserving my muscle strength. Ask your therapist about her knowledge of ataxia.and what her goals are. As your muscles tend to become weaker, you need to work on strengthening exercises.
Dear PG, Sounds as though your pt has no idea what you need! I would talk with your doctor about finding a pt who specializes in neuro-muscular diseases. I know you are in shock regarding your diagnosis, and trying to cover up your ataxia, but my advice is to embrace it, and work with a proper pt that will help you deal with it, can be supportive and understanding. I was diagnosed with ataxia 10 years ago, and although pt has been a challenge for me, I've NEVER had pt not believe my symptoms. I've always gone to someone that specializes in neuro-muscular diseases, therefore they know what I need for my ataxia. I have pt each year for 15 visits, as that's what my insurance will pay for. When finished, I continue to do what I've learned at home. When I say embrace your ataxia, I don't mean give up or give in! I just mean it's your new "normal" and you can work with someone knowledgeable, to be the best you can be! My best to you...;o)
I talked to my doctor's nurse and then cancelled my appointment at therapy. I then went to the therapy place and talked to the "boss". The boss and this person were best friends. I told the boss what happened and how I felt about what happened. I told her I was awake at 3:30 in the morning with pain in my lower back and left hip and that it was bad. I now have a new therapist. Thank goodness.
Lucy said:
Sounds ridiculous! Every physiotherapist I've had leaves me to do things by myself while they see other patients, but I've never heard a story like this. Sorry this is happening and I hope this can be resolved in some way, maybe another chat with your doctor as it seems that some things changed after you spoke to him like the amount of weights you were initially using. Get your doctor to speak to them about their approach with you. Unfortunately (I say this kind of tongue I cheek), when you present well they don't always get how difficult things are, this happens to me all the time and I have to stress how badly my day to day functioning gets!!!!
I talked to my doctor's nurse and then cancelled my appointment at therapy. I then went to the therapy place and talked to the "boss". The boss and this person were best friends. I told the boss what happened and how I felt about what happened. I told her I was awake at 3:30 in the morning with pain in my lower back and left hip and that it was bad. I now have a new therapist. Thank goodness.
Still dancing said:
What a story! Your doctor needs to know about her so you can get another therapist. There are so many good ones out there for you to use. I don't think that she knows about ataxia and how to work with it. My doctor recommended the therapist that I went to for my back and when he watched me walk, he questioned me and gave me new excerises for ataxia. I defentily would talk to your doctor and now!
I talked to my doctor's nurse and then cancelled my appointment at therapy. I then went to the therapy place and talked to the "boss". The boss and this person were best friends. I told the boss what happened and how I felt about what happened. I told her I was awake at 3:30 in the morning with pain in my lower back and left hip and that it was bad. I now have a new therapist. I don't think any of the therapist there know how to treat ataxia patients. This is the only place I can go right now.
I would do what “rose” suggested, and find a therapist that specializes in neuro-muscular diseases that will help you. Not all therapists are the same, and you might find one who has studied the effects of ataxia and the cerebellum. Keep talking to your doctor about this until he recommends someone better for you.
Sorry you had such an awful experience, PG. It sounds like your confidence is low at the moment (understandable), and you've just had your trust dented as well.
If this is the only centre that has PTs that you can go to, and none of them have experience with ataxia, the most important thing to find in your PT is a good relationship: a well-trained PT, with compassion, and with whom you feel some rapport. Such a PT would embrace the opportunity to learn how to treat a different condition from what they've dealt with in the past. And they would listen. From that point of view, it may even help to find a younger one - they're less likely to think they know everything already, and more interested in learning (just wildly generalising, not saying that older people always think we know everything, or aren't interested in learning!)
Thanks
Still dancing said:
I would do what "rose" suggested, and find a therapist that specializes in neuro-muscular diseases that will help you. Not all therapists are the same, and you might find one who has studied the effects of ataxia and the cerebellum. Keep talking to your doctor about this until he recommends someone better for you.
Thank you
Lute said:
Sorry you had such an awful experience, PG. It sounds like your confidence is low at the moment (understandable), and you've just had your trust dented as well.
If this is the only centre that has PTs that you can go to, and none of them have experience with ataxia, the most important thing to find in your PT is a good relationship: a well-trained PT, with compassion, and with whom you feel some rapport. Such a PT would embrace the opportunity to learn how to treat a different condition from what they've dealt with in the past. And they would listen. From that point of view, it may even help to find a younger one - they're less likely to think they know everything already, and more interested in learning (just wildly generalising, not saying that older people always think we know everything, or aren't interested in learning!)
I feel for you with this experience. It’s important to understand that most doctors and therapists aren’t trained well to understand Ataxia. I even have a neurologist who questions my ataxia symptoms and treats me like I am lying when I tell her my symptoms despite having been diagnosed by other neurologists with SCA. As soon as I can fire her I will. This leaves me feeling awful. Physical therapists I’ve had have had some experience with MS but explained to me why they wanted me to do certain things. After challenging myself physically over the last few years with swimming, walking in sand, walking over uneven surfaces, and carrying things I probably shouldn’t, I’ve managed to improve my balance to the point that I can now prevent falls by catching myself before going down. There is hope for improvement but it takes improving core strength. I’ve done this with things I like to do rather than physical therapy. Each year I go to Hawaii to swim in the ocean and play and this is the best therapy for me. I come back stronger happier and ready to tackle the world. Sounds like you have good common sense. Trust your instincts and fire any doc or therapist who isn’t improving the quality of your life. You deserve the best!
Thank you.
Hello PG. I was going to advise you but everyone here has taken the words out of my mouth. They gave you some very good advise and I see you have got a new PT. Good luck and take care.
Thank you
bron said:
Hello PG. I was going to advise you but everyone here has taken the words out of my mouth. They gave you some very good advise and I see you have got a new PT. Good luck and take care.
TH IS THERAPISTN SSSOUNDS LIKE SHE HAS NO CLUE. I HAD ATAXIA FOR 40 YRS AND FOUND THE EXPERIENCE WITH THE THERAPIST NOTHING BUT TIERING AND SOMEWHAT PAINFUL. I STOPED GOING AND BOUGHT MYSELF A TAPE ON EXERCIZING FOR THE CHALLENGED BY RICHARD SIMMONS. THIS WAY I COULD STOP WHEN I WAS TIRED OR BREATHLESS AND THIS WAS AS HELPFUL MABEY MRE THAN a therapiAST [AND CHEAPER]. TH ERE IS NO QUICK FIX OR CURE FOR ATAXIA AND THE CONDITIONS WILL WORSEN OVER TIME BUT YOU CAN SLOW THE PROGRESS IF YOU TAKE CARE OF YOURSELF;. GOOD LUCK
Thank you very much.