How fast does Ataxia normally progress?

[HhahahaaHaha]

Hi all

I am having ataxia symptom since around age of 21, was only get it diagnose around age 26, this year i am 32 by the way. My doctor could not diagnose what kind of ataxia i have, hence she just say this is idiopathic ataxia.

For me, the ataxia have been progress slowly but steadily worse. I am not able to run, but still can do alot of walking and even going to the gym for strength and balance training. Currently i am still working and my colleague didn't even know that i have ataxia as the symptom does not show when i am walking on flat and nice surface.

I would like to have a child, however i am worry that with the progress of ataxia, i am not able to take care of my child, any advise in this matters?

[wobblybee]

Generally speaking..it isn’t possible for a Neurologist to predict the exact progress of any type of ataxia.

In the UK….a certain amount of genetic testing is done after an initial appointment..but finding the cause is sometimes evasive.

If you did have genetic testing done, and a link with a specific type was found….it would be possible to have Predictive Testing on eggs..to eliminate the chance of passing the gene on..similar to IVF.

🙂Lots of people do go on to have a family..and they cope. Obviously it does depend on the specific type diagnosed, some types are notably more progressive and disabling than others. In the case of someone being Idiopathic… it will be a case of ‘wait and see how symptoms progress’.

I’m Idiopathic myself..my symptoms started when my youngest child was age 6..at the time I was in my mid 40s. Now..I’m 73, still walking..but I cope with progressive Vestibular issues and need a rollator for safety.

[Tallguy101]

Hi I was diagnosed with ataxia in 2006 at 38, but had been having small issues since mid 2004. I only in the last 6 months got an exact diagnosis of sca 48, before then it was just "ataxia of unknown type". I went to the 2012 Olympics in London with my 12 y/o son which involved a lot of walking. In 2017 I went to Hyde park to see live music with my partner, but by then I was starting to find moving around in the crowds v.difficult and did fall a couple of times.I did work full time until the first lockdown in 2020.

Hopefully this can give you some indication of progression but as wobblybee has said all ataxias progress at different rates. I'm 55 now, don't work but still manage to get out and about 2 or 3 times a week with help from either my partner, shopping trolley for support or my rollator.

Good luck to you in the future, work as long as you can and try and keep up the exercise it really is very important.

[Jenandbeth]

Beth's neurologist told me to look at the last 5 years and think about rate of change and use that as an indicator of the rate of change in next 5 years. As for having a baby, nobody can make that decision for you, you need to do what's right for you. This is your one precious life and you get to choose how to live it and in my opinion it's nobody else's business 😉. No mum knows what tomorrow holds when they choose to become a mum, there's always risk involved. Maybe getting a support network in place of trusted people who know about your ataxia and can offer support would help. Also your neurologist/ genticist may be able to offer support on having a baby, I asked Beth's geneticist before I had her sisters, neither of them have ataxia and I am so glad I had the courage to have them because they've brought us much joy. Take care Jennie

[michelagvolpe]

to slow down the progression of ataxia you can do many exercise like walking, body building, swimming ... as you can.... Eat good things, vitamins B, and so on....

[paul456]

In the 11 years you’ve had ataxia it seems that it’s progressing but very slowly which is a good thing so if you have a healthy diet, keep up with the exercise and get out and get out and about with friends it has a good chance of staying slow.

Having a baby of course is up to you and your partner but it wouldn’t put me off as long as you both agree that’s what you both want.

After all children are fantastic and a lot of fun, hard work, but worth it.

Try not to let the disability stop you doing anything lots of disabled people have children

Say strong my friend and take care 😊

[7151]

Polynerite was what i was dignosed with at thé beging of thé year after many years of tests finaly it was the lumber puncture that hit thé nail on the head .. wobbly Knee was kind enough thé translate in english sorry cant seem to do thé translation my brain gets vêry foggy i was always a bad speeler its definatly got worse ..my neurologue tells me i havent got alzima now we know what type of antakia i have still no treatment i get terrible pains in my legs and feet in thé morning i unfortuatly take tramadol its thé only thing that stops thé pain ..i do physio once à week in à private clinique thé french health système cover that i was told to stop my appartment bike that was apparently making thé pains worse , i know how problems swollowing so live on liquide lost 10 kilos I love goind to concerts so my daughter has got me a wheel chair

I have lost confiance to drive i can still do simple 3 kilomètres to go to thé baskets, i be 2 wonderful helpets they are my angels i have 6 hrs a week Split up in 3 times we are applying for extra hrs not sûre thé council will agréé..once agzin i get help to pay my girls butbi pay thé charges ,i manage to poodle around with my walking stike and wheel er i see people far worse of than me , i count my blessings soory i ve rampled on , i m sad i can jump on trapalins with my grand children or carry my 18 month old around.

I very much hope i dont pass this on to my Kids or grand children ,my GP knew nothing about antakia my neurologue is gréât and tells me thé brain is so complex even thé.neorologles are in thé dark with this illness

Seems to affect everone diffetently one things for sûre i m staying in my house lost in thé Woods, good luck eveyone never give up xx