I would like to ask people about their experience of physiotherapy. I sometimes read in this forum that people do physiotherapy and that this helps them but it's not always clear to me exactly how it helps them. Has anyone experienced an improvement in their ability to move? For example, is there anyone who was using a walking stick but after doing physiotherapy found they were able to walk without one? Or is is there anyone who was using a walking frame but after doing physiotherapy found they were able to walk without one?
Thanks
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Hi Iknow that doing balance exercises helps me. I still use my rollator and my walker but my balance has improved and I fall over less often Exercice helps but I do it with my bed behind me so I can fall back onto the matress so I don't hurt myself . Chris
I have just started physiotherapy after not doing exercise for years. It has challenged me to do things that I thought that I could not and also made me join other exercise classes. I am not free of walking aids but watch this space!! I now attend a Tai Chi class which I have found to be really good. I used to be doubtful about how this could help. I do it seated but I think that it is beneficial because of the breathing linked with the exercise. My advice is to do some form of exercise.
I have done physical therapy (I live in the US) each year, 15 visits, ever since I was diagnosed with ataxia twelve years ago. It helps me move better and things get easier the longer I do them. My neurologist says there's been successful studies done on rodents that show new neural pathways are made in their brains from repetitious exercise. He suggests doing the same movements over and over again and continueing to challenge myself causes this to happen. For instance, I stand at the ledge between my kitchen and family room in case I start to fall and need something to grab onto. I bend one leg at the knee, balancing on the other for as many seconds as I can. Then I do the other leg. The key to this is to keep upping the seconds I balance. I'm up to 30 seconds, whereas when I started two years ago I could only do eight seconds on each leg. I do this everyday, as well as some other exercises. Anyway, I find pt like that, as the more I do something, the easier it gets! Hope I explained this understandably! I use a cane when I leave my home, but am still able to walk, extremely carefully, in my home without it. I must use my cane to prevent falls, inspite of pt/exercising, that hasn't changed for me. Keeping muscles strong is very important, I think! My best to you..., ;o)
Hi , I have sca6 and I use the gym from 4-6 times a week. I have had physio in the past but I am convinced that exercise works wonders for me. If I fail to go to the gym for 2/3 days then my body really feels the difference. My balance deteriorates and then improves once I start excercising I feel much better. Hope that helps. Best wishes Steve
i agree my legs hurt more when been in wheelchair for any length of time, i can get around house holding on furniture my pt took me out i did not get of the drive and he made me come back inas i was so unsteady
i agree my legs hurt more when been in wheelchair for any length of time, i can get around house holding on furniture my pt took me out i did not get of the drive and he made me come back inas i was so unsteady
For me it's about building up core strength so that I can manage to do domestic chores more easily. I do have one exercise that has been brilliant for leg pain in a wheelchair though, lie flat on the bed and bend and bring one leg up as close to your bum as possible, do it a few times and then the other leg. It slowly releases the tightness in the the top of the leg so when you sit there is more give.
I know well people would do this standing up but that isn't an option for a 'wobbly'.
I was told to get a wheel chair in 2009 but I believe that getting any walking aid is sending the wrong message to my brain (just my belief for mysel) so I do not use a walking stick at all (I have one but carry it around folded in my handbag - that is me) However my neurologist never recommended physio, but I insisted and now work at strenthening all my muscles. Just back in July, my legs ached when I walked, and found difficult to change position from sitting to standing. I shook a lot standing, was unable to stand for long periods (5minutes) had difficulties in climbing in the bath, would get tired very quickly. I could not do the easy house chores like sweeping the floor, ironing. My legs just felt so heavy. I insisted on PT and 20 sessions later, I get in and out of the bath with no difficulty even dry myself standing in the bathroom, am able to bend, stand ironing for 2 to 3 hours, I am able to do all house chores which include bending. I repeat the exercises morning and evening and have a mini bike under my desk, so I pedal every now and then. Outside I cannot cope with the uneven surface very well and usually hang on someone (rather than my walking stick). In shopping malls I am fine, I do a lot of sideways walking but I am fine. I use the shokking trolley for support doing the grocery shopping and generally manage in other shops. I will carry on doing any exercise I can because it helps me to be more independant. On my last visit to the neurologist, shee was amazed at the improvement, in novemver I rated 8 on her scale and rate 13 in May and was assed last week after 16 sessions of PT (started in August) and all my homework and I rated 6 on that same scale. That gave me an incentive to carry on. What I am able to do now as opposed to a few months ago is amazing. I take vitamin E morning and night, magnesium for cramps which I no longer have and coenzyme Q10. Good luck and keep on moving.
Obviously exercising is a good thing but to effect change in ataxia, one has to do it all day. Sadly, I think the condition is bigger and faster than attempts to control it I work out . Pts and gym leaders as well as MDs are keen to point out how much worse I am. Boo hoo. Now sitting down and basically anything, is a chore. although I can cook , do laundry (somewhat) and do dishes. Zone
Maybe brainwashing works, but disagreeing is a no no so do whatever works or what u think works. Netty
Thank you so much to everyone who has replied to my post. The basic theme seems to be: do whatever works for you and keep moving.
I must just mention again Dr Clouse’s website: walkingwithataxia.com and the 2 news clips about him on Youtube: youtube.com/watch?v=Br72k-L... and youtube.com/watch?v=14-6VMK.... I have been doing his exercises since May and so far it has been a very very positive and encouraging experience. I would be happy to talk in detail about the progress I have made but there is one really important point I want to make. Until recently everything I have ever heard about ataxia and physiotherapy boils down to this: doing as much exercise/physiotherapy as you can is a good idea but the most you can hope to achieve is to slow down the progression of the disease a little bit. But whatever you do ataxia will get you in the end and there’s nothing you can do about it. But if you read Dr Clouse’s website, the message is much more positive. To quote from the homepage, “The third thing I can guarantee you is, many people with impaired movements have the ability to improve their impaired movement abilities. In fact, many of them have the ability to recover a great deal of their natural ability.” If you watch the clips above and read the testimonials section of the website there are several stories of people who used to rely on a walking stick but after working with Dr Clouse now walk without it. And here’s the really important point: If you achieve something like this you are not just slowing down the progress of the disease you are actually reversing some of the symptoms. This is what I have been experiencing so far: since 2012 I have been using a walker inside and outside. When I started doing the exercises in May this year I was unable to take a single step inside my flat without holding onto something - when I was in my kitchen/bathroom/bedroom/hallway I had to use my walker or feel along the walls and work surfaces. 5 months later I can walk (even though I move like a zombie with arthritis) around these places without any support. How can this be possible when one’s ataxia symptoms are only ever supposed to get worse? By the way it looks like Isabel (posted above) has had a similar experience: she was rated before and after her exercises and improved her rating by more than half. Again I would say if you can do something like this you are not just slowing down the disease you are actually reversing this downward trend which supposedly can only get worse. At least that is what it feels like. I am not saying that this website represents a miracle cure. And as for me who knows if I will continue to make progress or whether I will start to deteriorate again soon? But when you can achieve real and measurable achievement like this after 20 years of continuous deterioration (I have had ataxia since 1997) the psychological effect is incredibly positive.
By the way I would be very grateful if anyone could give me their reaction to Dr Clouse’s website. I don’t mind if your reaction is negative or sceptical. As I said I have only been following his exercises for 5 months so who knows what will happen in the future. Maybe I’m just deluding myself when I say how useful it is? Either way I really think it’s worth taking a look. Apologies for the long email-I’ll shut up now.
I suffer from late onset cerebellar ataxia due to head trauma which occurred 18 mos ago. At the beginning I was hospitalized and bed bound. Through 90 mins a day 5X week of physical therapy I first was able to transfer to wheelchair after 3 mos then eventually able to stand with 2 wheeled walker after 10 mos. At 15 mos I began aqua therapy. At 17 mos I could swim in warm ocean salt water freely! My upper body was not much affected but my lower limbs were mostly paralyzed at onset. I still need the assistance of a walker to stand and for daily activities. The physical therapy has helped greatly in rebuilding leg and gait muscles that were lost during lengthy hospital stay. The difficult part is regaining coordination neurologically with my muscles. I am still very awkward and unbalanced. My next goals are to be able to walk with just the assistance of a cane. Who knows how long that will take but I will continue to practice and improvise upon all that I have learned through extensive work with various physical therapists. I have just moved into a disabled friendly apartment and am working hard at regaining a somewhat normal life again. During my recent move I had to stop exercising for 4 weeks and my loss of mobility due to lack of exercise has been noticeable. I can now again and will vigorously resume my daily exercise routine with high hopes of continued gradual improvement. I take a combination of vitamin supplements muscle relaxers and pain pills 4X/day. The inconvenience and pain has been well worth the results for me!
Strengthening the muscles in your bottom, back and core helps to counteract the tipping or falling and the ataxic gait. It is a great help but one must commit to regular sessions with the physio or bio kineticist for it to work. It gives one a feeling of fighting back and a super feeling of well being. I love it. I can arrive at a lesson depressed and leave feeling up beat and more in control of my destiny. I have MSA. Do try it.
Hi, i use a stick when out and a small scooter on bad days, i had Physio for a year and he set me a simple programme up to do at home and encouraged me to get an exercise bike and I do 10 minutes a day on the bike. Some days I can only manage 5 but he said to just try and keep moving. The MS society do a fitness DVD for people with disabilities which is fantastic. Hope this helps and all the best .
about three years ago I was very exhausted after being in a re-education centre. The constant exercises every day were too much and I left in a state of meltdown. I rested for about 5 weeks and when I went back to my usual pt he was shocked and worried about my state. I had an urgent appt with my neurologist. At this time I was also suffering from pretty severe depression.
then over time I rebuilt and improved my abilities and strength at my pt sessions. I still do 2 x 1hour sessions per week. I do balance exercises too and the pt manipulates and stretches me and massages my neck which constantly contracts.
I can now walk a little further, I can do more different activities and I can do things for longer.
Exercise and stretching def improves your abilities.
However go at the pace which is good for you. If you completely exhaust yourself the recovery can be long, however with constant exercise this has got shorter too.
And never stop completely doing things for too long, the journey back is hard work.
I do walk with a cane, but I am not striving to get rid of it. I don't use it indoors. I have less falls due to balance exercises but still need the security of my cane outside
Again, thanks to everyone for replying to my post. One tip that I have just got from the USA-based discussion forum Livingwithataxia.com is to use a more expensive walker that allows you to walk between the wheels and therefore maintain an upright posture. I ordered a Volaris rollator from this website: homeandmedical.co.uk/health.... This make was recommended to me by a fitness expert. I still think the best website I have seen for advice on physiotherapy is walkingwithataxia.com and if you search for it on Livingwithataxia.com you will see that other people in the US recommend it too.
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