What (if any) treatment are you getting for your Ataxia

[SussexDodo]

I have late-onset cerebellar Ataxia. I'm 61 and was diagnosed 10 years ago. Now using a wheelchair. I take no medication but worried about my lack (inability) to do physical exercises. Not getting much help or advice from my G P - who I see about 3 times a years for blood pressure checks. Feel like I'm being 'left to rot' by the system because I'm coping quite well. Any advice or shared experience from fellow Ataxians about what should or could be happening would be very welcome.

[jurgen]

For years have I been suffering from cerebellar Ataxia. -

and it´s getting worse. Old age ????

You had rather see a neuro-doc, I think.

Your GP doesn`t seem to have a clue !

Besides physio (twice a week) I get no treatment - and, well I take ginkgo

and I try not to check my list of passwords but memorize them to keep

fit mentally.

Regards

[SussexDodo in reply to jurgen]

Thanks jurgen. Saw a neuro-doc over 2 years ago after G P ignoring me subsequent to diagnosis and have a follow-up meeting with him next week. The fact that I had to remind / ask my G P to set it up didn't fill me with confidence. Hence my comment about 'being left to rot'. <smile>

You say you're getting physio. Can I ask who arranged that for you? I did get physio for half-a-dozen sessions (again over 2 years ago), but was told I'd have to pay for it after that! The system letting us down again?

As to brain function, I'm studying for a Degree with the O U and am heavily involved with their Disabled Students' Group (the O U has over 12,000 disabled students) so my brain is very active and my workload (online) quite heavy. Therefore, it's not my mental fitness I'm worried about. It's my physical fitness which is causing me concern and my question was posted so I could get an idea of what other Ataxians were doing about it and what I should or could be demanding.

Like the tip about ginkgo. Will check it out. Thanks and regards.

[charismatic in reply to SussexDodo]

sussex do do

Can I ask you more about your involvement with the OU-Can you tell me the conditions for disabled students?

[SussexDodo in reply to charismatic]

Hiya,

The O U has over 12,000 disabled students and I've found the support the O U gives very helpful when it comes to making life a bit easier. I've been a student for 5 years. There's the Government funded Disabled Student Allowance (DSA) which ALL students, whether O U or not, can access. There are also loads of forums within the O U to discuss any problems you may have whilst studying. The D S G itself has both a free members only suite of closed (private) forums as well as an active presence on Facebook. All in all, I'd highly recommend the O U for study if you're disabled.

[jurgen in reply to SussexDodo]

You say you're getting physio. Can I ask who arranged that for you? I did get physio for half-a-dozen sessions (again over 2 years ago), but was told I'd have to pay for it after that! The system letting us down again?

*********************************************************

a neuro-doc found out that my ataxia was not only chronic but getting

worse gradually and decided that the only effective treatment was physio

Regards

[Willowpuss]

Similiar story really,I was put on a Balance course by my GP several years ago (which helped enormously) and I attend a speech therapy group every week (Speakability),there are groups nationwide and you can refer yourself to it.

[cocoa in reply to Willowpuss]

In my experience you have to ask for everything. Have you been to one of the Ataxia centres ?

When I was first diagnosed I felt that I had no help at all. It took me two years to get to the top of the waiting list to do the Expert Patient Programme. That was the turning point for me. It gave me the confidence to ask for everything. It seems that if you do not, you will get no help.

I have found alternative therapies very helpful and have been seeing a nutritionist for a year. On my last visit to the Ataxia Centre I was told that my ataxia had stabilised, so it must be helping.

I am also getting help at my local neuro-physio department and am attending a t'ai chi course run by them. I am hoping that this will help with my core strength and balance.

[mams in reply to Willowpuss]

who reffered you to speech therapy

[klazien]

I was diagnosed with Late Onset Idiopatic Cerebellar Ataxia in 2005. I'm 67 now and in a wheelchair. The only medication I get is a mild antidepressant. Two years ago, after asking, my GP referred me to the local gym. As a disabled person I did not have to pay for that.

After half a year I started with an exercise cycle at home but can't do more than 2 minutes per day. Till the age of sixty, when this ataxia started, I was physically very fit. I used to train horses. Maybe it is partly age.

The weaker I get and the more tired, the less willpower I seem to have to work out. I tried to find out about riding for the disabled but in the whole of South Wales that only seems to exist for children.

Once a year I see somebody at the ataxia centre in London but it took a long time and a lot of reminding to get that first appointment. Afterwards they very often changed my yearly appointment date to later and later. Since there is no cure and these appointments are only there to monitor the situation, I don’t mind.

But I have had to ask and remind the specialist there about getting an MRI. Those MRIs must be very expensive to make a specialist so reluctant to book one. I also had one when I was first diagnosed. My deterioration had been so rapid and drastic, I wanted to hear how that showed on an MRI but both times it showed nothing wrong there and nobody can tell me how that can be.

[Piero]

It seems S.D as if most of us are in a similar situation. I'm sixty-nine and have late onset Cerebellar Ataxia. I live in Cardiff and receive no medication -as I presume nothing is appropriate- and no physiotherapy. My GP has displayed little evidence which suggests that he has an understanding of the condition ' but I do visit my very pleasant neurologist annually.

I'm sorry to sound so predatory but the correspondence you've produced has presented me with one or two ideas which I might explore ... gingko .... balance lessons .... mmmm ... I'll look into those.

By the way, does anyone think that it would be beneficial to seek an appointment at a designated ataxia centre. At present I see only a neurologist at the nearby University Hospital.

[silkwood in reply to Piero]

Is that the Heath .I was at Uni in Cardiff.My first husband did his training as a dentist in Cardiff.I go to the Oxford Clinicnow.I have late onset Ca too.

I don't think the Neurologists can offer a miracle cure but they can give us access to various things.

[Piero in reply to silkwood]

Yes Silkwood, I do see my neurologist at 'The Heath'. I'm still however unsure of the differences which may exist between what is offered at a dedicated ataxia centre and what one may access through a neurologist working in a traditional neurology department. Essentially, I wouldn't mind the opportunity to pick up some exercises or techniques which would help me cope with the symptoms.

Glad to hear your husband trained in Wales.

[jomo50]

Unlike many of the previous respondents, I can not thank the N.H.S. enough. When I first became ill with cerrabeller staxia 6 years ago at the age of 61 my G.P. sent me immediately, 4 days later to see a neurologist. He sent me for an M.R.I. scan. Once C.A. was established I was within a month from visiting my G.P. put on I.V.I.G. After 6 attempts with no success, I was sent to London for a second opinion. They said I had very progressive C,A. and there was nothing they could do. I was then sent to see the Muscullar Dystrophy Doctor who has put me on a daily course of Mychrophenalate and a yearly dose of Rhitoxomab.

It is now 6 years later, I can still walk although wobbly, My speech has deteriated, but I am otherwise stable. I do exercise each day on my exercise bike.But, I think you have to be positive and believe that one day soon they will find a cure.

Until that day, think positive and enjoy other things in life.

John

[wobblybee]

Because I had a seizure in my sleep (after the car sliding on ice) I was diagnosed

with Epilepsy, that was in 1990. I had balance problems prior to this which were

dismissed. Medication I was forced to take for Epilepsy (I needed to drive)

appeared to effect my eyes. An MRI in 2000 showed Posterior Fossa Atrophy and

a tortious right Verebral Artery, somewhat distorting the Medulla on the right. I was

told to find this reasuring, since there was no Aneurysm present, and I would just

have to live with it.

Despite having no further seizures, I had to take Epilepsy medication (a requirement

by the DVLA) because of that one incident. After several distressing appointments

with a GP, not a Neurologist, I gradually reduced the medication and eventually

stopped taking it altogether just 2yrs ago, there has been no sign of Epilepsy.

After several falls, another MRI in 2011 showed some Cerebellar Atrophy, hence

the diagnosis of some form of SCA.

I do not expect to see a Neurologist again unless my situation changes drastically,

I do not expect to be monitored by my GP. I take a mild low dose anti-depressant and

let down by the system.

I've tried Pilates to strengthen core muscles and help balance, certain movements

bring on nausea, after lying down my body feels like a dead weight and I have

difficulty changing position, and getting up again.

Currently, I can manage outdoors using a stick, balance is a problem when I alter

the position of my neck, or it's dark, or the ground is uneven.

Apologies for ranting on, obviously it's a bad day.

Best wishes to all.

xBeryl

[neta]

I recognized some of your answers from previous posts. To recap- I was diagnosed with CA in 2010. In 2011, it did not affect my eyes. It was decided that in my case it was likely brought on by an auto-immune condition--- this after blood tests showed a supremely high (bad) antibody count. I have seen a steady deteriration since 2010 (but still walk w/o anything) when I felt pretty much fine and thought the whole thing was a joke.. But the deterioration may have been slowed or stopped because of the IVIg treatments I am taking once a month, and the execises I am doing. I also see a shrink, who has given me anti-anxiety and anti-depression medication. My main neurologist has told me that depression may enhance the symptoms. Though they were very nice, neither the physiotherpist nor the occupational therapist knew what I was talking about or helped me at all.

The "change" wrought by the IVIg is not dramatic. Sometimes, I am even of the opinion that it has exacerbated the CA but this might be my imagination..

I am furiouis that there is (supposedly) so much research going on but no cure. Even some cancers and certainly AIDS are no longer death sentences. Didnt two scientists just get a Nobel for cell regeneration? There are no reports on any studies. This whole thing is such a crap shoot. Most sufferers are complacent, I find.

For rich desperados, there is an impt maverick dr. in Tel Aviv who is willing to do stem cell research by withdrawing one's own stem cells (legal here); culturing them; and reinjecting them (illegal here) in Monrteux, Switzerland.People come to him from all over the world with very very ill relatives who have nothing to lose but money. My prof-dr told me not to do this. Ditto China.

I am writing from Jerusalem,Israel There is no Ataxia group or center here. I see two drs. about once a month. Both are neurologists. One is a professor. I also saw two doctors in the USA one of whom was/is a prof. He said the treatment here was/is correct. I am not British. But there is a British dr willing to work with auto-immune induced CA patients. He is in U. of Sheffield, Neta

[BobR]

Hi

I was diagnosed about 6 years ago with Idiopathic Cerrebellar Ataxia and I am 54 years old. I was referred by my Neurologist for Physio therapy but had to ask. I have now moved on to hydrotherapy which has helped greatly with my balance.

The physio therapy sessions were costing a small fortune with hospital parking fee's so i decided to join a gym for £23 month which worked out alot cheaper. I am doing the same excercise program as I was doing at the physio therapy dept, concentrating on core strength and balance, I am also repeating my hydrotherapy excersises in the swimming pool.

I have managed to loose some weight which helps alot.

I find it is a waste of time dealing with GP's as most have not got a clue about Ataxia's and our needs. I am under a very good Neurologist and he encourages me to e mail him if I have any problems or things have deteriorated, communication is excellent.

Hope this helps

Regards

Bob

[silkwood]

Nothing wrong with my intellectual abilities.No medications.Just have difficulties with walking and speech.Cynical about brain rehab via Physiotherapists or Neurophysiootherapists but willing to learn more from others experience.Dr is very good and refers me to a Neurollogist and then I get stuck in the rut.No cure etc.Left from year to year reading horrendous things on the internet.

[jurgen]

I find it is a waste of time dealing with GP's as most have not got a clue about Ataxia's and our needs.

*******************************************

Questions to Harry:

1 is Bob´s statement correct ?

2 if "yes" how can one change that ?

Regards

Jurgen

[HarryB Administrator in reply to jurgen]

Hi Jurgen

Most GPs know very little about Ataxia, if anything at all. Doctors learn through experience and exposure to conditions. GPs know a lot about the more common conditions, for example asthma, heart disease, diabetes, chest infections (this list is not exhaustive by any means) as they see patients with these regularly, some every day. However, because Ataxia is rare, GPs exposure to patients with Ataxia is extremely limited. They may only see one person with Ataxia during their whole career spanning 40 years. There are hundreds of rare diseases and it is unrealistic to expect GPs to have good knowledge of all of these as well as good knowledge about the more common conditions that they see regularly.

Ataxia UK fully recognises this (the situation is not just confined to GPs) and as a result has produced Guidelines for Medical Professionals on the Management of the Ataxias including a supplement for GPs and one for physiotherapists. These are currently being reviewed and updated. You can either request a hard copy from the Ataxia UK Office or download them from Ataxia UK's website, ataxia.org.uk. As well as individual doctors being able to view those on the internet, patients can take them along to their own doctor for them to read and refer to.

Here is the link for the Guidelines:

ataxia.org.uk/pages/resourc...

Best Wishes

Harriet

[jurgen in reply to HarryB]

Thanks Harriet

Regards

Jurgen

[laddie in reply to HarryB]

My GP asked me to find out details of the Ataxia centre at Oxford. The Ataxia Uk office sent me detals and an information pack for my GP they were very helpful and pleasant to talk to I only hope that my doctor found this inf. helpful I have not seen him since.

[Razzy in reply to HarryB]

When I moved and changed Doctors, Dr Henn told me quite honestly he knew nothing about Ataxia and would be interested in finding out . Ataxia UK sent a whole lot of pamphlets etc to him.

He is very good when I do have to go see him, and he is not afraid to go on line and check out anything he is unsure about ,

he regularly asks about when my visits to the Ataxia clinic are , what is happening and if there is anything I feel I need that I am not getting .He said not enough Doctors are given information about SCA and many patients do not tell their GP that information is available through Ataxia UK ......Helen

[silkwood]

I agree with you Harry about doctors but they should refer you to a specialist in Ataxia.There's nothing worse than trying to explain to a doctor when you cannot talk.

I just want understanding.

[tedjohnson]

Dear Sussexdodo

The truth is there is no cure for us, but neither is there for some Cancers, M.S. Hodgkins

and very many other problems with our bodies and brains. Try and keep in touch with fellow 'ataxians' and hopefully we can keep each other cheerful

Very best wishes Ted

[Hidden]

I can't complain about the treatment I have had in the past but things seem to have stalled for a while (nearly two years since I saw my Neurologist). I have however went back to my GP (albeit a different doc because my initial doc retired) and asked to be referred back to see my Neuropsychologist who maybe able to help me with social interactions I feel have been having problems with. I feel doctors have been helpful but only if I seek the help myself. I hope to see my Neurologist as well. I understand doctors are under a lot of pressure and I respect this.

[SussexDodo]

Thank you all so much for your inputs. Really appreciate it. I've copied all your answers and am keeping them to hand to refer to. I've now got a neuro appointment next month as a follow-up <rueful grin> to my last appointment over 2 years ago. I had to ask for it! Anyway, thanks again all and take care of youselves.

[february]

I'm 58 years young (soon to turn 59) and I was diagnosed 10 years ago with Sporadic Cerebellar Ataxia (non-hereditary/unknown cause). It affects my gait/balance, dexterity, speech and swallowing. I reside in the United States in the State of Michigan. I see my neurologist annually, but recently saw a new one due to the retirement of my original one. My new neurologist told me to do exercises for strength and balance. He said the key is to keep challenging myself. For example, I stand on one foot for as long as possible and then repeat with the other. I stand by a ledge between my family room and kitchen in case I lose my balance, I can grab on. I keep doing this and try to increase the time. I also use hand weights and walk on my treadmill for strength (I like my treadmill, as I can hold on). My neuro also said to do exercises nonstop for an hour each day. I purchased a book ($19.99) online called "The Balance Manual" which has good exercises to improve balance. It was written by a physical therapist, who continues to send me ''free" online videos for exercise and balance. My neurologist said there have been studies done that show your brain can make new neural pathways, if you repeat, over and over again, a specific exercise and keep challenging how long you do it for. You can Google "exercises for balance and strength" to find some good ones online. My neuro, as well as my old physical therapist, gave me some sheets with exercises on them. Many of you have mentioned attending physio. Therefore, you should be able to get some from you therapist. Also my neuro said to continue to be as active as safely possible. I use a cane when I leave home to prevent falls, but am able to walk, carefully, in my home without it. Even those that use a wheelchair can do exercises sitting. Whatever you can do safely is beneficial with ataxia! Hope this info is helpful...;o)

[SussexDodo in reply to february]

This is so useful and helpful. I'm off to Google "exercises for balance and strength" right now. Thanks very much.

[february]

Also Google "The Balance Manual" as it's VERY helpful! Best wishes... ;o)

[wibblywobbly]

Hi, I live in France. I'm 46 and was diagnosed 3 years ago - but am still awaiting results of the last genetic test to see which ataxia I have exactly. I take baclofene to relieve symptoms of spasms and muscle contractions. I take ceris for problems with my bladder. I see a physio therapist twice per week. I am totally in agreement with February. My therapist has been telling me about this and when I really work hard at it things do get better after a little time. The repetition of excercises can help develop new neuro pathways. I walk outside with a stick as I'm frightened of falling, indoors I manage without it - unless I have a really bad day. If I want to go clothes shopping or an outing for a few hours I use a wheelchair. I can't walk very far - 500 metres. I see the neurologist once a year - unless there are any new developements.

I am seeing the neurologist next week as now I have problems in my arms and hands and really have to concentrate to do things with my hands sometimes now.

[wobelyjohn]

join the club. I thought I was the only one that everyone feels that they can't look good by getting involved with him so let's pretnd he dosn't exhist.

[annasgonesailing]

A neuro physio will be able to recommend exercises appropriate to your abilities to strengthen your core muscles. I have just found somewhere with disability swimming sessions which allow me to walk widths, balance on a noodle and swim with fins all of which are a nusience in a normal session.

[Agility2]

I see that the last posts were three years ago here so I don't know if what I say here will be seen, but the one major thing that I was told and have learned myself about CA is that cardio (aerobic) exercise is the most helpful because it helps to wash out brain toxins. I work out on my stationary bike about 20 minutes/day. The opinion about other exercise such as yoga is a bit more divided, with some saying it helps and some saying it's cardio only that helps. I feel that the yoga as a supplement to the bike helps me. Tai Chi is supposed to be very good but I haven't yet tried it.

The second thing is that certain supplements and acupuncture (I've been going once a week) also definitely help. The supplements that I have found most useful are L-Taurine (on an empty stomach) 4-5 g./day (grams, not mgs), Lion's Mane mushroom (2-3 g/day), Cordaceps mushroom, 5-HTP, Tumeric with Black Pepper, Collagen Peptides by Vital Health, and Adrenochrine by Apex Energetics. There is an article about brain stem cells and Taurine from Life Extension magazine that cites peer-reviewed studies showing you can restore brain cells to replace ones that Parkinsonism kills off.

There are trials I recently learned about that are about conditions like CA (Parkinsonisms) which are aimed at stimulating brain stem cells, so this disease may not too long from now be cured! There was a webinar last week at the Michael J. Fox Foundation on this. It's worth listening to.