I have been finding recently that my ankles are giving me more problems.
They give way (go weak) suddenly, even when walking normally (ie. Not turning, or stepping, etc)
I bought some ankle supports in the hope that they would help, but not really as I still have the episodes where they lose strength, and can also be rather painful when it happens.
I haven't fallen on the ground yet as I have been lucky enough to have something solid to grab onto when it happened, but...
The ones I got are those you wrap around your ankle and fasten with Velcro.
Any thoughts? I'm due to see the physio at the ataxia clinic in a month or so, but wanted to try to manage this in the meantime.
In case you are wondering, that is not my foot in the photo
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Wyndham
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I`m glad you explained about the foot in the photo
I have physio`s come to my house every week to work on standing, posture and sitting in wheelchair correctly and funnily enough sitting on the bed correctly.
It`s been quite a journey so far. Walking is still really difficult even with the rolator and zimmer frame.
There`s only so much they can do because of the SCA6, so they`ll soon be stopping their visits.
My understanding is that approximately 40% of people diagnosed with ataxia do not know what type they have, so you are in good company. In my case I have been diagnosed with Ideopathic spinocerebellar ataxia.
Ideopathic really just means they have no idea - so I am in the 40% unknown category -, the spinocerebellar bit is because (I believe) folk with ataxia have this part of their brain slightly atrophied or shrunken. Ataxia is the visible symptoms of the condition (ie the wobbliness, etc), but is generally used as the term for the whole condition.
When people talk about what caused ataxia, they should really be asking what caused the atrophied or shrunken cerebellum (part of the brain), which in turn leads to the symptoms. Causes are generally believed to be genetic, but I understand this is not 100% certain.
The type of ataxia really then refers to identification of the causes and this is done through specialised genetic blood testing. This can be arranged by your neurologist. GPs are not qualified to read genetic blood tests and I understand they are not able to order them.
Note to Harry or some other super knowledgeable person: - please check that what I have said is okay
Thanks for the post its interesting, and nice to hear helpful information apart from Ataxia UK i'm flying solo. I have been told Cerebellum Ataxia and away you go! After 2 years I am still fighting for help and further tests. Its all this sca4/5/6 etc where Im at a loss. I have a 16yr old son so I would like to get for information for his sake and future. You seem to be super knowledgeable yourself, I have a regular neurologist, who I have yet to meet but I will have a chat with him or even her! x
Although a significant proportion of the ataxias are caused by a genetic defect, this may not be the case. There are four specialist ataxia centres in the UK, in London, Oxford, Sheffield and Newcastle and you could ask your GP or neurologist for a referral to one of these where the cause of your ataxia would be further investigated.
You may find the following publication form Ataxia UK helpful:
Harry hi, yes I've seen the info for these centres form Ataxia UK but I have been asking my GP till im blue in the face to be referred but have had no luck, do referrals to the centres costs a lot of money do you know? That would explain the reluctance of my GP, not to worry as I just said to Wyndham i'm meeting my neurologist soon so I'll ask him to refer me, if I get no luck from him i'll have to get a push bike and start peddling ha ha I wish, walking 20ft is a problem let alone a bike. Thank you for your link.
So, no need to compliment you on your perfectly manicured feet then!
My ankles sometimes give way, and of all places, on stairs. No advance
warning, just pain and weakness when I put weight on the foot. Walking
on a flat surface doesn't seem to cause this. Maybe it's a reminder that
it would be a good idea if I could lose a bit of weight
Those ankle supports look very useful, that should improve your confidence
when out and about! Not to mention being cosy in the winter. xB
Even though the physio`s will eventually stop their visits, I`ve promised them I will continue the exercises they have me doing as long as is posisible.
One of them has already said she will no longer be paying anymore visits as she has done all she can...........
Of course when you look at it..............to be honest, there`s not really a great deal they can do, it all boils down to the individual and how far their SCA has progressed.
Mine is progressively worsening as each month passes but I`ll still keep fighgting it
The worst for me is putting my feet down after they have been raised for a while. For example, sitting on the sofa with my feet on a foot rest - I got a lovely pouffe from John Lewis. The absolute worst is after a sleep. I usually have to rest, sitting up, for several minutes before even attempting to stand - even if I am bursting for the toilet...
Even then I have to hold onto the furniture and walk very carefully, as this is when my ankles are always weak and a little painful too.
There is no swelling, just weakness in the ankles.
That sounds pretty awful Wyndham. This may come across as a silly question but can your GP not prescribe you any medication, or have you already travelled dowb that raod?
Unfortunately I have a new GP who not only doesn't know me, he also doesn't know ataxia, and so far has been rather dismissive of anything I try to raise. I can not rely on any help from him
Hi Wydnham, do you have any regular physio? My ankles and knees used to give way with no warning whatsoever - and yes like wobblybee particularly on stairs, but since I've found a great physio, with who i do two sessions per week, these occasions are very rare. However, my physio did recommend that i change some of my footwear because it is too heavy. He said it is better to walk with more control and that with the extra weight it would make walking even more difficult. From my experience I think some strengthing excercises would prob be better. Do you walk with a stick to stop those falls?
I use a stick all the time and this has helped enormously, but of course a stick can only help me keep my balance when the ankles go, and not stop the actual 'going'.
My physio at the Ataxia Clinic has refused to keep on seeing me until my depression is brought under control... This has been a three year long battle to try and get treatment such as counselling therapy - anything really beyond a psychiatrist and medication. I've had this for three years (since being referred) and have seen little improvement. (I've made formal complaints, got my MP involved, and have even written to the Sec State for Health, and even the PM).
If this continues to get worse then I may well need to start wearing specialist support footwear - I was just hoping to put this off for as long as possible. For example, I love walking barefoot (or in socks), around my little flat.
I used to have foot/ankle problems, but I lost 25 LBS and my problems got much better! For every LB lost, it equals 6 LBS of pressure joints etc. Works for me! ;o)
Hi Wyndham, I agree, exercise is HARD to do with ataxia. Just do what you can do, safely of course! If you need to sit, you can do chair exercises (Google "chair exercise" for ideas). I also go to stores that have carts to push and walk around, as that's good exercise and it gets me out of the house! ;o)
My daughter doesn't have any problems with her ankles however she has a backwards flick with her knees when walking, it was her physio who first noticed this. She referred her to an orthotist who prescribed her knee supports which are made to measure and also gave her insoles. These are both helping a little. Maybe you could ask for a referral to an orthotist.
maybe specially made inserts in your shoes could help you too. I have them and walk so much better with them. Apparently have lost lots of muscle in my feet that's why i need them. But I often walk around barefoot too.
Have you seen a psychiatrist or counsellor? I don't know if there is an assoc that provides councellors for people with illnesses like ours in UK. I see a councellor regularly here from Paraplegic assoc de France. I find it has made a huge difference to me as she has experience of working with people who are ill. The psychiatrist I saw before was good but less helpful as she wasn't so used to working with us and people with MS parkinsons etc
I have been registered with mental health for nearly three years and have been battling to get treatment diver since. I do see a psychiatrist who gives me pills, but...
Even my MP has written to them!
Thank you for the suggestion about the shoe implants - I will ask the ataxia physio when next I see her.
I have the same problem with my ankles. Before I was diagnosed with Ataxia I was told this problem was due to hyper mobility. My knees bend too far backwards too.
To prevent my ankles rolling I wear normal ankle boots for support even in the summer. They provide me with confidence which makes me walk a lot better.
UPDATE Since I wrote this a few years ago the ankle problem has largely gone away to the extent I no longer need the ankle braces. No idea how this happened. I still stand up carefully as I do when I start walking as every day is different.
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