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?
Physiotherapy should provide improvement providing the exercises the physiotherapist has given you are practiced regularly. In fact any exercise you can do should provoke improvement. I have very late onset ataxia which started to become a problem just over a year ago. It became worse over the following six months even though I was lifting weights regularly and walking 6 km. with a cane however walking became impossible without some guidance for reference, a wall, or a person for instance. A couple of months later I purchased a walker and found that an hours use improved my gait, posture and mobility dramatically. The effects were transient however lasting several hours. I then acquired a cane with a small plastic claw to navigate around the house. Gradually, over time, I started to improve. I can walk 6km. with the walker with no problem and can use the cane for getting around town which was previously impossible. I no longer need the cane to navigate the house. What’s more I was able to play golf all summer, which I didn’t think I would be able to do, walking the course and using a pull or a push cart for support. This too improved my mobility. At first I had extreme difficulty walking down inclines even with support and this has now passed. I need my walker for guidance only not support; some people may need it for both. The only walker I found that meets my needs both in quality and function is made by Volaris. It is only available on line however you can google them and find their website. I has large wheels which makes navigating over rough or unstable terrain easy and also has suspension so the wheels stay on the ground. More importantly it is designed to walk inside the unit without having to bend and distort your posture. It’s worth checking out. I have exercised strenuously all of my life and this has no doubt helped me and I cannot overstate the benefits of exercise for this and other health problems. I see my physiotherapist quarterly now to check my balance, posture and gait and to monitor my progress (or lack thereof). I think over time exercise and physiotherapy will improve your mobility and I wish you well.
Well I’d like to share my experience. I found it really hard finding a therapist that worked with neurology problems near me. I found a neuto therapist about a few hours away and i was skeptical of course because ive been to therapists chiropractors etc all saying they could help but after my money. But this new neuro therapist i have been going to for a few weeks. In those couple weeks i jave been walking alot better connecting well with the ground and i have been introduced to different methods that helps me keep my physical symptoms under control. I still have trouble in public apparently I’m a little too emotional lol but if im alone or with maybe one or two other strangers i remember my training from the sessions and im able to walk really well. Without actually using my cane as a crutch. I even ran! Granted i was strapped to a machine and I’m on muscle relaxers 3 times a day but still. I havent run in about 7 years! I have sca7 btw .
Hi athlete
Thanks very much for replying to my post and thanks for telling me about
your progress. It’s incredible how differently ataxia affects people. I was
interested to hear about your high quality walker too. I am 51 and I’ve had
ataxia since 1996. I started using a walker all the time in 2012. At first
I used to take it for a walk every day. I can’t say I ever managed a 6km
walk like you but I usually managed to walk for a good half hour and
sometimes more. Over time though, I found that I was transferring more and
more of my weight-bearing to my arms from my legs and this made my mobility
worse. Since May this year however I have been following advice and
exercises from a website called walkingwithataxia.com. The website claims
to be able to help people at all stages of ataxia but for people using a
walker or wheelchair the main focus is really strengthening your leg
muscles over several months so you feel rock solid and stable when standing
up. The theory is once you get to that point then you can relax the muscles
in the rest of your body and start to move more.I was sceptical when I
started but so far I have noticed a big improvement.
Good luck with your condition. The fact that you are obviously so fit is
bound to make a big difference.
Best wishes
Jonathan
HI Jonny,
Thanks for your response. Ataxia is certainly appears to be unpredictable in progression and also in severity. I am 72 now and first noticed balance difficulties at age 65 (It took 5 years to get a diagnosis and another year to see a neurologist). I think the design of the walker is very important; I tried several makes at the local “Y” and they all distorted my balance and gait by causing me to lean forward. I have been doing very heavy leg presses with multiple reps. for many years, playing squash and tennis and cycling and rowing so my legs have always been strong and yet the ataxia continued to progress and got much worse a year ago. I still would not discount the importance of strong legs; perhaps my situation would have been worse without them. The important thing about walker design is to ensure that it allows you to walk inside the unit (between the handles) so there is no compulsion to lean forward and indeed this did and continues to help me improve. Good luck with your progression and again I cannot over emphasize the importance of exercise in which my neurologist is in accordance.
I am enclosing a link to the North American distributor of my Volaris walker and one to a European distributor.
I am using the Patrol model both because of my height and the fact that it can navigate uneven terrain easily.
I think you are right about leg strength; I need the walker for guidance only and not for support - I found that the walkers typically available in stores are designed in such a way that the user it forced to place weight on the walker which detracts from exercising the leg muscles and also distorts posture.
Hi athlete
I have just acquired a Volaris walker, which arrived by courier the day after I ordered it. I can see that the design is much better than the standard walker which they give you free here in the UK but which, as you say, makes it very difficult to use without leaning forward.
I must put in another word for walkingwithataxia.com. The website is produced by an ex-surgeon, Thomas Clouse MD. Because he has had ataxia himself since 1997 he gives lots of useful advice and is easy to contact - I have emailed him half a dozen times in as many months and he has always replied fairly quickly.
Anyhow thanks for the tip about the walker.
Jonny
Hi everybody;
I participate in a well-known women’s circuit exercise club. Insurance pays for it. I am also a cart pusher in stores around town. I try for the 10,000 steps, but usually only manage 5000 steps. I often wonder how I would be without any exercise. I am 65 and was diagnosed last year. I have been a walking since my 40s. Have even participated in walking races before things went haywire.
I hope the Volaris does as much for you as it has done for me.
I noticed an immediate improvement in my balance and my posture after I started using it (I made sure I got at least an hour’s walk in each day) although the effects were transitory lasting about several hours. Over time however, and I don’t know it it’s the walker or something else, may balance and posture have improved dramatically and I can walk around town with a claw foot cane (I use one with a small plastic base) with confidence. I still use the rollator for long walks. I found out about the Volaris by chance; I was sitting waiting for a blood test and the woman beside me was using one and gave me their website (the rest is history). Thanks for giving me the link to Dr. Crouse. I was aware of it and had it bookmarked however I have never contacted him and based on your experience may do so if my situation changes for better or worse.
It’s really hard to say. Build quality is important and I know the Volaris is particularly robust. I took my unit out of my car and carelessly turned my back only to see it run down an incline for a couple of hundred hards and hit a guardrail with some force… A passerby kindly retrieved it for me and surprisingly it was undamaged save for a small scratch.
There are many designs similar to the Volaris on the market and some are probably just as good. I learned of the Volaris having seen one owned by a lady I happened to be sitting beside while waiting for a blood test who had one.
What attracted me was the build quality, the fact that it is made in Sweden and not some third world sweat shop, that that you could walk inside it, that it had suspension and could be used on uneven terrain for. hikes and that it was easily collapsible and light.
One of the most important benefits for any rollator for people who require guidance and not support (although the Volaris can be adjusted to do both depending on your need) is to choose one you can walk inside. To further avoid distorting my posture and gait I set the handles a couple of notches above the recommended level which ensures that I am not leaning forward.
Hi @athlete, thanks for your promptly response.
The problem is exatcly this: I live in Brazil, a third world country, lol.
This is why I’m searching for options for the Volaris one.
I found a Brazilian distributor on the Eurovema website; it’s Celtica Brasil Ltda. I am also enclosing the link to the company.
I hope this helps.
I know Brazil has its problems but Canada is no roaring hell either. The poor, the working poor and the middle class are becoming increasingly screwed. With the help of the walker we might be able to get out and demonstrate.
xB