My husband is 33 yrs of age and recently been diagnosed with cerebella ataxia. Within the last 3 months of being diagnosed and also having symptoms over the past 2 years. He's speech has really detiriated within 3 months.
We are awaiting he's appointment for the London ataxia clinic which is due next month.
We have just found out he's genetic blood tests were negative of him carrying the gene. Luckily we are grateful that our 2 children will be ok knowing he isn't carrying the gene.
He's condition is not hereditary. So this is all very confusing as to why he ended up with the condition. He uses a crutch as a walking aid to help him stay stable.
Could more people give advice on this condition. And with he's speech and walking getting worse within just 3 months. Is this going to continue getting worse over the course of time!
Please help. I'm stressing every day with trying to help with he's condition.
Written by
Kirsty34
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There are other causes of Cerebellar Ataxia other than it being genetic. And, neurological conditions can be notoriously difficult to diagnose because symtoms can 'overlap'. I hope many of your questions are answered at the Ataxia Centre.
Symptoms can come on gradually, or seemingly overnight. It's not easy to predict the rate of progression, and not everyone with the condition experiences exactly the same challenging symptoms.
There are numerous Spinocerebellar Ataxia Types, the most common are tested for first. My own type is Recessive, passed on by carriers who are unaffected themselves. Originally, after testing negative for SCA6, said to be the most common type, I was asked to donate DNA for research purposes. It took several years before a link was found with a specific mutant gene.
You can search online for information, this will help you understand Cerebellar Ataxia and be useful at the appointment.
As Beryl says, there can be all sorts of causes. And in quite a few cases (mine included too), doctors/neurologists are still at a loss to find an explanation.
As for your, completely understandable, concerns about the rate of progression over the last few months. And hopefully this will ease worries. I was diagnosed with SCA last year. Since then, my symptoms have gone through stages where they progressed quite rapidly, and times when they hardly progressed at all. So just because your husband's symptoms seem to have sped up over the last few months, hopefully they *might* slow down again.
Seeing an ataxia specialist, as you're doing, will help put your mind at ease.
And you'll always get friendly, knowledgeable, support on here.
Hi Kirsty, can't really add much to the excellent advice already given by Beryl and Iain. My friend was diagnosed at about the same age 9 years ago following deterioration in her speech. Despite many tests over the intervening 9 years her particular type of ataxia is unknown, thought to be the result of a faulty gene that she was unlucky enough to inherit. Though genetic in cause it's not genetic in being automatically passed on, which is what is generally thought of as genetic I think, if that makes any correct sense? It's devastating and you're bound to be stressed out trying to get your head round all this. Reading various posts on here has helped us enormously both practically and emotionally. You are not alone. I hope the excellent Ataxia UK site helps along with this forum. We started to feel less panicky after first seeing her Ataxia specialist so hopefully this will be the same for you. All the best x
looking at the good responses below and what you say you are doing everything right. There are also support groups that meet up and are very useful and can fill in a lot of gaps. I am also at the UCLH clinic (London) in October and have found it helpful to write a list of questions to ask. It is probably a good idea to speak to your GP for a referral to a speech and swallowing therapist.
Go to this site walkingwithataxia.com/ and read what Dr Crouse has to say. You can also read my reply to Sherana, it may help you to feel less stressed out.
Dear Kristy, It's understandable that you are anxious about your husbands condition! I was diagnosed with Sporadic Cerebellar Ataxia (unknown cause, symptoms 24/7, progressive) twelve years ago although I had very minor symptoms starting about eight years before diagnosis. I use a cane (stick) when I leave home to give me more stability and to keep from falling, but am still able to walk (extremely carefully) in my home without it. I tend to slur my speech also, although that's been about the same since diagnosis. I've had genetic testing for the known dominant and recessive ataxia's, which was negative. Ive also had a specialized genetic "exome" testing for the recessive ataxia's, which was inconclusive. Anyway, no one in my family, as far back as we know, had/has ataxia, except me. Anyway, my ataxia has progressed a bit over the years, but very slowly. May I suggest that your husband do exercises for strength and balance (look on the net), as this has helped me (safely, of course...,one can even do them sitting down if need be!). Also try to ea tas healthy as possible (lots of veggies and fruits), as it's good for over all general health. It's hard to know what may happen with your husbands ataxia (progression rate, etc.), as everyone is different and so little is known about ataxia! Hopefully you'll get more answers at his appointment. One thing you can be sure of, he's not alone in this journey! My best to you and your husband..., ;o)
I developed CA after a dose of flu that damaged my cerebellum- it took 5 years to get a diagnosis - it effects my swallowing and speech badly as well as walking. I also have 2 other brain conditions an acoustic neuroma in left side that causes balance problems and hearing is gone that side. I also have been diagnosed with having normal pressure hydrocephalus and will have a brain shunt as soon as possible to limit the effects but no-one can tell me what the outcome can be- I had a useless consultant rheumatologist but after 3 years of nobody know what was wrong me \I now have a wonderful consultant neuro at St Georges London- his name is Dominic Paviour and I see the neurosurgeon later this month- the moral of this tale is to keep asking and I also asked for a second opinion. It is great that you have an appt next month- go well prepared with a list of questions as I find if I am not well prepared I come out and everything is a fog. Dr Paviour also write really good letters to you and the GP which explain everything and are useful if you are applying for any assistance - I just send them copies of the letters which explain everything. good luck love Sylviaxx
I am 69 years old. I served in Vietnam in the sixties and was sprayed with pesticides (agent orange). My doctors and I strongly feel my illnesses of progressive supranuclear palsy and cerebellar axatia are contributed to the pesticides. The reason I have mentioned this is maybe your husband may have been in contact with a chemical in the past. In a court order a veteran was awarded a disability claim for PSP due to exposure to agent orange. Harry / Rasty46
I am in the exact same situation. 32 with cerebella ataxia. I have a little one on the way. My partner is terrified of what might happen to me and our baby.
The only thing I can advise is try to get some speech therapy for his speech.
Keep active, strong, and look at Frenkels exercises for walking and balance issues use a Wii balance board, it has helped me keep on walking, it was advised by the neologist
Keep strong and always ask for help you need it. You are not alone.
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