Hi Everyone
Newly diagnosed after 3 yr search and deterioration
Dont know what plan I should follow to help re chronic walking....inc severe spinal sensations aiming speech slurring and coordination problems had mri on brain snd spine before BUT just had redone at Queens Sq. Waiting results
Cellebella Ataxia on discharge and progressive endlessly used
Chronic decline in 12 months
Desperately upset but MUST accept
THANKS for any tips
Live alone
Angela
Who did you see?
What did they tell you to do?
Do you have the exact type of ataxia dignosed or are they still running genetic tests?
That is crucial as there are many clinical trials around you could choose to join, and many more in the pipeline.
I would consider physiotherapy, speech and language and seeing an ot.
Also, consider applying for an adaptation grant for your home, and the ot will help you decide what to have done.
It is a progressive condition but it is always rapid and it could be years before you see deterioration.
Read up on prof Tabrizi’s progress with Huntington's drug trial. This type of drug is being engineered for other types of ataxia and we are all very hopeful.
Make yourself physically as strong as possible and don‘t forget your mental wellbeing.
You are by no means alone.
Ataxia UK and National Ataxia Foundation (USA) have fantastic websites with tons of advice, read, read, read, educate yourself.
But first and foremost, ask for a specific diagnosis, get a multidisciplinary team assessment (at queens), speak to your local social services (they have an ot who can help you with a grant/council) and start exercising!
Your body has a glitch but you are in control! Take control!
Massive help...thanks
Huge deterioration over last 12 months but told by QS should plateau..... needs managing to do so
Awaiting gene tests etc after 2 days as inpatient
Walking most upsetting
Seen OT
Shower in..... my adored deep bath out
Trying to find a walker, Rollator
Need an exercise plan
Whats suggested for chronic mobility pl?
Thanks v much
Angela
Where are you based? We r in essex
My son has DRPLA, rare form of SCA
Rollators were extensively reviewed on this forum, there was one that didn’t tip over, looked good, have a read through the history
Physio exercises for ataxia are all online, haven’t found a physio yet, all proved useles... ANYONE???
If you message me maybe I can help further
Don’t give up on yr bath if u like it, ask for a hoist system to be installed and there is no reason why you can’t continue using yr bath.
I love heat, so I have a small sauna which I lie in and my muscles relax, it is a piece of heaven...
I can empathise with your position totally.
I was diagnosed last December following a couple of years of balance issues and then my speech started slurring last August. I’m 53 and feel like I’ve aged about 30 years in the last 18 months. I stopped driving and sold my car 2 months ago, my speech is quite bad, I can’t write, my typings terrible and my physio gave me a walking stick last week. It all seems to be happening so quickly - just when I think it’s plateaued it gets worse again. To say I’m devastated is an understatement.
You need a referral to a local physio and speech therapist - I’ve found them really helpful. Exercise is also helping - there are some exercises on Ataxia.co.uk which I’ve found quite helpful. I do these twice a day - nothing strenuous. I also joined an exercise class on Zoom that’s held daily - it’s run by Stayactive4life, they do some strength and balance classes and it is helping.
I know it’s hard, but there are things you can do to improve your ability to face your symptoms you just have to look for them. You have to read, read and read up about the condition because nobody is going to give you much information about it as they don’t know what it is, and there is lots of helpful stuff on here and ataxia.co.uk.
If you need a friendly ear, don’t hesitate to contact me. It does help to speak to people who know exactly how you feel.
Stay strong.
Looked for exercises..could you forward?? THANKS a lot
A
I’ve put the link to the page here - not sure if there’s another way of sharing this, but if there is I couldn’t work if out:
ataxia.org/11-exercises-for...
Let me know if you can’t use the link.
Works perfectly v grateful THANKS
Hi sorry to hear your decline ,ive also noticed big decline in last year when did you have your scans and how long do you have to wait as im waiting for my results hope you feel better soon .
Thanks
We know its Cellebella Ataxia
Chat on phone 20 Oct
Does SCA run in your family and do you know what type of SCA you have? I'm Lucy, I'm 32 and was diagnosed with SCA2 last year which runs in my family. I'm still walking but my balance is rubbish, my speech is also slurred. I'm a social worker and due to covid we are currently working from home although I can feel my degderity worse when writing reports. Hope you get more clarity.
Lucy
Every good wish Fortoday. You asked for advice. I'm seventy-six now. I was diagnosed with SCA eight years ago and I reckon like many in the ataxia community I had it for a year or two before that. Anyway, I have only two pieces of advice to offer. Firstly, visit this site frequently, accumulatively there's a great wealth of experience on it and available to all of us.
Secondly, if you're able to, keep walking. It might mean walking with an aid or as was my case an hour ago walking supported by my wife's arm but keep at it. I suspect that the 'use it or lose it' adage applies unrelentingly to our condition. All the very best!
Really appreciate your reply...will do A
Good morning Angela
I have cerebellum ataxia cause unknown. I got my diagnosis in May, 2019. I have been misdiagnosed for over 10-15 years. I lose count because there’s really nothing the medical field can do for me. Like you I’m declining rapidly but what made me reread your post was, chronic decline in 12 months. I found that confusing. I’ve been declining for YEARS! Not one doctor ever gave me a window of time and I’ve asked often. I tend to have an ataxia attack, (my words) and I have another decline. Weight loss mostly. I have the typical ataxia issues. Slurred speech, my walking is horrible, fatigue, and chronic pain. I’m sure there’s more but who cares? I don’t. I’m just trying to be happy. Yes I have bad days but I also have great days. I’m 50. My MRI from 2008 said I have severe atrophy in my brain for a patient my age. I was 38. Nobody said anything to me. I worked full time. I used a cane because I was “clumsy “ I slurred my words because I was “tired”. The list goes on and on. My point is they didn’t know much in 2008 and now I have a diagnosis. That’s probably the biggest difference. Everyone is different. I hope you find answers. Have a great weekend!
I’ve given up on walking aides. Cane is no longer stable. My walker is cumbersome. I have a bit of a temper so I end up throwing it across the room. My family wants me to get a wheelchair. I’m not ready or maybe I’m just really stubborn. Since the pandemic hit I haven’t really been out. I furniture walk in my house and use the steadiness of one of my adult children’s arm. Perhaps why they’re encouraging a wheelchair? My husband doesn’t mind walking out with me so I feel like it’s one more thing in my house I simply won’t use or I’m just not ready for a wheelchair. No.. I’m just stubborn! My symptoms declined rapidly too. That’s what prompted my husband to insist I see a neurologist. I was doing my own physical therapy and exercise. I have plateaued since my diagnosis. My biggest issue is weight loss. I can’t eat. It’s painful to swallow and digest. Almost feels like the food gets stuck in my chest. Takes me forever to eat a meal then I’m full after a few bites. Yes I know ensure, but to me it tastes gross. I sound so whiny. My apologies. Thank you for the clarification!
Hi Jessie,
I totally empathise with your stubbornness to succumb to a wheelchair, my mum was like that before she died. She died was she was 49. My uncles died aged 39, 51 and 52. My nans died when she was 56, my great uncle when he was 54. It sounds weird but it's comforting to me to read and connect with people older on this who suffer from SCA as my family seen to pass away early. SCA2 runs in my family. I'm 32 and having to consider a stick now as my balance is shit and I'm getting funny looks
I'm a social worker to trade and was recently visiting a prison when a prison guard was abit of a dick to me, asking if I was OK whilst scowling at me suspiciously. None the wiser I suppose but it does get to you. What's SCA do you have? If you know?
I can relate to having a temper, mostly frustrated I suppose as I'm absolutely sick of smashing glasses, forgetting my words and thoughts etc.
Is there anything you take that helps you such as suppliments or CBD etc?
Lucy xx
Hi. I started with a cane in my 40s but I was coming off crutches due to a broken leg. I’m so clumsy....🙄 I walk like I’m drunk so I would get the looks too. I don’t have a cause for my ataxia. They did every test available. I was happy it’s not in my genes. I have 3 adult children. I spoke to a neurologist and discussed head trauma. My brain atrophy starts higher. I don’t have my medical records in front of me so I’m repeating this not verbatim. My first car accident that I remember I was about 5 years old. I was in the front seat, no seatbelt, it was the 70s so no judgment on my pops. 😜after a Venn diagram and a 45 minute discussion she thought it was possible. I have no other issues and I wish I could say it was from drinking. Sadly, I’m a lightweight. Yes, the girl puking in the corner explaining how I’m not drunk. This forum is wonderful. I’m in America, yes you can feel sorry for me, praying he’s gone in 36 days. People here have no clue about ataxia including me. I honestly don’t know all the acronyms. I was a licensed sign language interpreter and really it was my walking/falling that forced me into retirement. Sorry, tangent. So yea 2 brothers, Deaf parents, AWESOME childhood! But I was also an idiot. Double digits for broken bones. It’s really not that far of stretch to say I was just clumsy. I truly believe that it’s head trauma. CBD is a waste of money. Weed is legal here, Chicago,Illinois. I’m on narcotics for pain so I no longer indulge.
Aw wow!! I thought I was reading Americanisms lol yeah that would be relief if it isn't in your genes... Really hope you get answers
Lucy
Im nearly identical but no hubby etc
Digestion totally spastic hsp term!! Just eat small meals now
Wheelchairs in cupboard
Sick of it all as a condition
A
Anyone any experience of way forward??
Endured 2 days of tests as inpatient after 3 yrs of decline
Received "all normal" brain...spine...bloods etc from ataxia clinic
Shocked
Not had physical exam
Chronic speech mobility falls....all function
Left with telephone follow up 2 weeks
Letter says contact if need to
Sent letter asking for physical exam
V v low
New Ataxia photo ID cards 
New here- Canadian with Gluten Ataxia...
ataxia
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