New and Very uncertain

[Mitch9667]

Hi Everyone, I have just been told that I have Cerebellar atrophy I am 48 . I went to see Dr Giunti for the first time yesterday and blood was taken to try and identify what SCA applies to me. I have been told that my symptoms are mild but the condition is progressive . I have had balance and co-ordination issues I think for 5 years , I sometimes have slurred speech my eyesight feels as though it has deteriorated . I have tingling sensations in my hands and feet . Whilst I can walk unaided at the moment I find steps awkward I am wobbly and can't walk in a straight line. I have depression right now which isn't helping. I will be seeing a neuro Psychologist and Physio within a couple of months but will have to wait until January before I see Dr Giunti again. Can anyone tell me what does slow progression means is it 5 years , 10 years? I know that I am luckier than most given that my symptoms are mild but that hasn't stopped me being scared to death

[wobblybee]

Hi Mitch 🙂

From first noticing 'something wasn't right' to where I am now, and still walking, it's been  a good 15yrs.

Asking other people about the rate of progression isn't a very good guide.  Quite often people have onset of ataxia at different ages, and for different reasons.  Even when the cause is genetic,  symptoms and progression can vary enormously within the same family.

I was initially told, it's progressive, degenerative but mild, and that was it.  Depression is very common, almost a symptom if you like, and no wonder when you perhaps feel caught in a vicious circle of fear and uncertainty.  If you agree with this suggestion, try a mild antidepressant, it could very well help you get things into perspective🙂xBeryl

[Mitch9667 in reply to wobblybee]

Thank you for your comments . It's good to get some feedback

[Floramac]

Hi, Beryl is spot on with her comments. We are all individuals and so whilst there may be a trend in certain types of SCA we are all different . I take each day as it comes good and bad and have adopted a live for today attitude. I am sure your meetings with the psychologist will help but perhaps you could look at some online stuff whilst you wait like mood gym or other online resources for helping you feel better. Wishing you all the best Caroline x

[klazien]

The progression is different with everyone. Mine went extremely fast the first half a year, then stood almost still for several years and the last year things get worse again but slowly.

You should take a mild anti-depressant for your depression. I did for several years but not at all for the last year. It took me time to get used to the idea that this ‘disease’ has no cure. It seems I was too hardwired into believing that whatever one gets, one gets better. Maybe it is the same with everyone. I got used to my restrictions and feel triumphant with finding another way of doing something that I can’t do anymore the way I always did.

[sylviagreenhalgh]

it took 4 years for me to be diagnosed with progressive cerebellar ataxia. luckily I am retired so the days are my own to spend as I like but I live alone . I have a glass half full mentality which is the best you can do  but sometimes things can get me down. If I feel low I ring the Samaritans but I also have a counsellor who will see me at home if I need it. My walking is just about nil nowadays so the NHS gave me a powered wheelchair  which I am still getting used to but a ramp was ordered 6 months ago and when I asked about it at the local council the answer was that it would take another 6 months to get it so I asked if I was self funding could I get it earlier- within a week an access specialist  came and measured up and yesterday it was fitted- a customised ramp with a hand rail and it has totally changed my life. I have not been able to get in the garden for 2 years after a fall put me off but now I feel brilliant. this week I  to have a spinal tap procedure to drain off the CSF ( hydrocephalus) which the consultant said might improve my walking- the first appointment was cancelled so I hope the apt will happen this week.at least the better weather is on the way hopefully. my partner of 20 years left me as I was too disabled but am now used to living on my own- he was very controlling over everything . I have a very good carer who lives nearby and you just get on with it. I have had to give up playing the violin and piano - I used to play in an orchestra my son conducts but when I went to the rehearsal before the concert I found it upsetting as everyone assumes you will get better so I go to exercise classes at a disability centre where everyone has problems and no-one asks you what is wrong with you !so let us all enjoy the longer days ! all the best Sylvia

[cymruralf]

Hi Mitch

Were you diagnosed with cerebellar Ataxia or Atrophy

[Ali-G]

Hi Mitch, I am 51 and just been diagnosed, and like yourself I am waiting for blood tests to find out what strain of SCA I have. I like yourself have been affected for about 4 to 5 years without knowing what it was. My hands and feet are always freezing and like yourself I can not walk in a straight line and am very wobbly. One of the best things I have purchased is a hiking stick, walking unaided is something I have done for a long time and frankly it is exhausting. It really helps and many people think I am very fit and think I look like a rambler, (little do they know). I like yourself are uncertain about what slow progression means but am determined to do as much as I can for as long as possible, by pacing myself. Because, I was unable to have a family my two hairy great muts are very important to me and walking my dogs has always been a daily pleasure, this I am hanging onto. So, me and my hiking stick whom I have nic named BOB, go off daily for a walk in the country, when I get home I fall in a very happy heap, and more often than not have a kip. Please try to keep your spirits up, I really hope you are getting lots of support from family and friends. Take care of yourself. Ali x

[Hidden]

Hello,

In preparation for your next appointment, any knowledge re: your family history would be very helpful, in the event that your type is idiopathic or possibly hereditary.  In either event, progression of any type of ataxia is unique for an individual, regardless of family history or not.  All we can do is to live day by day and exercise, exercise, exercise (in moderation)! That seems to help keep the progression at bay for me, both physically and mentally -- or so I like to believe... Symptoms management as per your personal choice (medicine or natural) is entirely up to you.  Good luck to you as your diagnostic odyssey continues.