I got a neuro physio after 1 year waiting list. I’ve just had 4th session and she has discharged me saying my balance won’t improve. I can do the basic balance exercises she gave me and the basic hand ones. My goals were to be able to walk on beach and a way of dealing with a few steps without rails.
I currently walk with two Nordic poles. I think the exercises are helping and would like to progress to the next level of exercises.
I would like to know of your experience and thoughts before I contact her to understand where I go from here. Trying not to be frustrated 😊
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In my experience, I only had one neurophysio who was supportive. From my late 50s to 80 now my CA has taken my balance but daily exercise has helped along the way. If you can afford private physio or personal trainer at the gym it will be money well spent. X
its very frustrating not being able to do the things you could do only six months ago. Walking is getting slower, balance is getting worse. I still manage to do pilates and core sessions every week and have a very good teacher who has shown me adaptations on various exercises. Getting down on the floor is impossible - literally cannot get up again, but a chair helps
Unfortunately balance gets worse as ataxia progresses, all you can do is manage it as it goes along.
Nordic poles are good and I used them for several years before I needed some wheels. I started with a scooter as I could still walk short distances.
Then the lockdowns reduced my options for going out. I moved to an electric wheelchair, in my case an all terrain version, as I go out with my wife in the New Forest. She’s a keen Walker. The wheelchair also goes on buses, trains, aeroplanes etc.
I do 30 minutes yoga based stretching 6 times a week before breakfast, again with my wife, and wheel around to my local gym about 3 times a week. As previous replies keep as fit as you can and find a yoga or Pilates teacher who can help. A well trained dance instructor maybe of help as they understand the body so well. In my experience physios, even neurological ones are trained to seek recovery back to ‘normal’, which is no good to us.
Look for things you can do and find lots to laugh at. The final point I want to make is about controlling your weight. As we move less we need less calories. Start cutting down asap as it’s easy to add weight but very difficult to lose it. Still enjoy food, just less of it!
Hope this helps. I am now 73 and although I miss my lost ability I have found other things to focus on and make the best of my life.
Hi i move all thé time even if i have to crawl upstaires i do it I was thé cat lady ( i ve had to stop taking in anymore ) but i ve lots of steralised cats on my land that i have to do thé rounds my inside cats and 2 old dogs all that keeps me thank god very active
hi sea I know how frustrating it is my son used to have physio once a week until there said it wouldn’t do him any good so disheartening- so he pays to go to a gym and also does yoga - I think with this condition you have to try and keep your muscles moving - I don’t think this condition get the help and publicity other illnesses get and feel for everyone with it as it takes away so much of what you want to do in life . But all your comments are so encouraging - keep going and don’t let it beat you. I’m a carer for my son with cerabeller ataxia
My physiothérapie said thé same she could nt do anymore for me ! My neurologue says i must continue ..honestly i belive you have to get on with it ... i can do my own physiothérapie from home just getting on very well withy everydqy life ..with handicap badge ..wheeler ..shoping on thé drive and à wonderful home help that i work with her Good luck x
Sorry to be the one to burst everyone’s bubble that this gets worse but I believe Sea loves the beach. That’s enough to give anyone hope and a goal. All the comments seem to have progressive goals of a cane to a walker to a roller to a wheelchair. Why can’t we take this goal of wanting to walk on the beach and aim for it no matter how you get there.
My apology if my comments offend anyone but I’ve had sca for 6 years. I’m here to tell you it doesn’t have to progress this way. Sure I’m not going to run but I dislike running anyway. My 85 year old father walks faster than me. I’m 57 but I can do more chin ups than him. I went from a cane wearing a knee brace. I went from a bicycle to a trike.
Somehow by changing my mindset I am able to still surf. I no longer use a cane, exercise helped me recover from a torn acl and meniscus. I use the trike to help me carry my surfboard to the beach. Recently upgraded to an e-trike to get there quicker. It takes forever to walk down the sand carrying a board but I use the board like a cane if I stumble. I can’t really see the waves until they’re already close to me because of this double vision. At least it looks like there are more waves. I don’t have the quickness to always make it down the wave but it’s only water.
What I’m trying to say is it definitely gets worse. But if there’s a roadblock, there’s also a detour. You may not be as good as you used to be but at least you still have the will to try.
My goal is to watch my wheelchair get rusty sitting in the corner of my storage and never get used because I’m too busy at the beach.
I’m thinking a trike too thank you I will turn it into a reality 😉. I love it hope you’re at the beach surfing. I got a sea swim with my friend helping me in it was soul affirming x
thank you so much everyone for your very helpful and positive responses. I have decided to get on with it and do find that my weights and yoga are making me stronger. I was in the sea this morning with my friends help in the sun before it got stormy and there was two horses and a doggie class. Thank you so much you have really helped me and I’m in a much better place 😀
Hi! Unfortunately my physio sounds like yours. I still need a rail to help my balance. I I was recommended to use a Nordic pole which I use when I'm not with my partner or friend, where I link. I started in January a keep fit class once a wk. It's private and the name is Foundation Physio so the instructor is a Physio. Maybe you could ask your physio if there is something similar in your area? I'm finding this better and my balance is improving!!
Thank you so much I have now got a private physio and a good yoga teacher and weights. My swimming friends are great at helping me in and out. You all have been so helpful and I am going to be more resilient at making sure I keep adapting. Yes so far I’ve found the Nordic poles keep me more upright than the four wheeler and have picked up a lot of ideas and tips from all of you thank you
Well you made it to the 4th physio appointment, I was told on the 2nd NHS physio appointment they could not help me anymore. That feeling of hopelessness is still with me!Now working with a private physio things are much more positive.
I agree with everyone else "use it or lose it" so applies to CA but needs to be balanced with "pace or bust".
Just saw a neighbour in his 80's, broken hip that was replaced a few months ago and he still moves better than me!
I’m glad you now see a more motivating private physio 😀 I have left her message to give me a ring just to ask a few questions. It’ll probably be after the holidays. Most places are on holiday for 2 weeks here. Got another sea swim in but had a wee fall just bruises though so was well worth it. I believe in the use it while I can too . Thank you keep smiling 🤗
Hi Sea I was diagnosed with ataxia in 2006, so been living with it for over 17 years.
I had to retire from work 3 years ago, which at the time was a blessing in disguise as I have now more time to exercise at home. As well as helping my partner who works very long hours and very hard, food shopping etc and doing the vacuuming.
I have had nhs physio 2 or 3 times and have to say they have been extremely helpful, each time about 8 one hour sessions. Also one lot of private, at £100 p/hour! This is about 15 miles away from me. Because I've had a lot of sessions there, I'm told that I can self refer if I need more ie ring the hospital and book myself in. I must be just lucky I guess.
I have a four wheeled walker in the car boot which I only use outside for trips over 50+ yards.
I'm considering getting a wheelchair for holidays with my partner. As otherwise she wouldn't get one.
As people have said, use it or lose it definitely applies to ataxia. I do over an hour of strength training and balance exercises a day, also 30 minutes on a rowing machine.
Tbh after 6 years I was still driving to football, walking through a v.packed concourse as well as getting to my seat.
Obviously we're all different and progress at different rates.
I think it's wonderful that you still swim. For me the beach is probably my worst nightmare, in terms of mobility.
I use the rowing machine because I'm aware of cardio and how sedentary we are as a general group.
Sorry for sending such a long reply.
Good luck to you in your journey. I hope you achieve your goals.
I have been really heartened by all your lovely and motivating responses. I got my call returned by my physio yesterday and got a chance to state my case. So I’m seeing her at the hospital on 27th so I’ll take it from there
I also had a call from the neuropsychologist I’ve come to the top of the waiting list so I’ve going to be assessed on 24th and get to see my consultant on3rd August for more tests and what the plan is now.
Yes I agree it’s good to stay as active as possible and hopefully I can agree a referral system with my physio that works for us both or get referred to someone that will. 😊
Just to let you know my update.Good news is I have four sessions with the neuropsychologist and then she’ll review me. It was mainly questions last Monday so we’ll see how it goes. I got my tricycle today 😀 and see my consultant on 3rd. Bad news is I fell in the shower on Tuesday but okay apart from hitting my head and hurting my ribs so getting my confidence back. Physio discharged me today and hadn’t referred to OT at Easter like I understood. Dr now has but frustrating . More positive than negative but I did let physio know I wasn’t happy useless but made me feel better 😀💕
I am always appalled at how little physios, even neurophysios in NHNN know and understand ataxia. If we read the NICE guidelines on terminal illness and palliative care (which applies as there is no approved curative treatment for any SCAs) the onus is on retention of abilities and achievingnawew the best quality of life. Maybe we need to ask Ataxia UK for help with writing a document aimed at the therapy professionals (pt, or, SLT) with some of these highlights so that all of us can start on a good footing at the first of our appointments rather than such a large number of us being fobbed off by “lack of progress”.
My experience with NHS physio is that they asses you and then give you exercises to do at home.
At my last neurology consultation I asked for neuro physio again. A community physio is visiting me at home soon. I would pay for treatment if I thought it would be helpful.
I have been re referred to a different trust and have organised a private not so local physio. So hopefully a better understanding also following complaints procedure. Due to consultant intervention and friends I now have an OT assessment in my home on Thursday. Sorry it took a fall for this to happen x
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