Ataxia UK
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Symptoms getting worse 😔😔

Hi all

My SCA6 seems to be worsening at a great rate of nots. Can’t stop tremors and walking any distance other than a few feet is impossible even using my walker.

I’m starting to feel very depressed again.

I’ve practically had to give up cooking which I love and am just resigned to sitting in my chair.

I thought it was supposed to be a slow progression but it’s got worse very quickly 😩😩😩

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So very sorry to hear that! I have CA plus PD, so I can relate a little, to how it can be. I’ve had days when essential and resting tremors just won’t stop, even with medicine, and I’m so wobbly trying to walk from the front room to the kitchen, with a cane, that I feel I’m going to fall at any moment. I also enjoy cooking, and have had to give up a lot of it. I can only stand for a short while, before one leg starts getting numb. I would recommend that you call or see your neurologist/specialist soon, and if you aren’t on anti-depressant’s, maybe the doctor can help or increase your dosage, if you are. Also, perhaps, there is more, medically, or rehab-wise that could be done to help you regain some more of your mobility. Best to you!

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Bev 😕 I know 3 people with SCA6, all roughly the same age (mature😉). None are exactly the same. One has progressed to a wheelchair, one gets around on a scooter, and the other one uses a wheelchair occasionally. Only one experiences severe speech difficulties, only one has Nystagmus. Otherwise, all are challenged by basic ataxia symptoms, with most of these being variable.

I know how upbeat you can be 😉 Is it time for a medication review 🤔 xB

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Oh B I’m getting so very down. I’ve been drinking heavily and feeling that life is not worth living.

I called mental health crisis team late last night and they said that they would get me a referral.

I’m not going out. I’ve now been diagnosed with nystagmus I can’t drive anymore I’m getting incontinent can’t hold a cup

My Dads death has hit me very badly and my family aren’t talking to me because we had an argument over my ataxia. I’m just selfish that’s what they said.

I’m so down

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Dear Bevick1964,

I read your post and an relate 2 u.. I have also been diagnosed with CA, auto immune generated or unknown etiology. Lately I feel as though it is in a free fall, degenerating fast. My eyesight is shit, My walking is shit as is my speech. Who wouldn't be depressed? With all that I look the same. I think part of the problem is that no one tells anyone what to expect or whats going on. beryl is right on this score, xxx N PS Being wheelchair bound is not the end of the world,

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😔 Shock and stress can really aggravate symptoms, and, if alcohol and medication are added to the mix, who knows what the effect could be. I think you were wise to ask for a referral, you need an ‘ unbiased ear’ to listen, and help you get back on track emotionally ((hugs))xB

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Dear Bevvick1964

I was so sad to hear how down you are feeling. This has almost certainly contributed to your deterioration. Your dads death must have set you back and the lack of empathy by the rest of your family all contribute in a physical way for someone with our condition. I too have SCA6 and it is only us who have any idea what it feels like to be in fear of falling over all the time and other issues. Lots of GPs are not familiar with CA but I urge you to go to your GP and try to get an appointment with a specialised physiotherapist who can give you some exercises. I know that when you are depressed the last thing you feel like doing is exercise but if you start with some gentle leg and hip strengthening excercises and try some balancing exercises (holding on if necessary) and make yourself do them at least once a day it can only be beneficial. I try not to sit down for longer than half an hour at a time - even though I would prefer to sit down all day! Very best wishes and good luck.

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Sorry to hear you are struggling, please get some help for your situation. You are not alone and people on here do understand . Nothing stays the same, good or bad, and sometimes we need that bit of extra help x

Jan

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Hi, sorry to read about the worsening of your condition...i have sca2 and i go for a very long time without it getting worse, then wham suddenly it has progressed ,i have Ataxia for 20 yrs and in that time it has progressed badly 3 times including when i lost my dear hubby,i know it is the nature of the beast we have!!..Hang on in there,i have come to accept my Ataxia and work along with it,sadly my bro has not and he has become depressive,but seeing him makes me determined to try and live side by side my Ataxia,otherwise it can destroy you emmotionaly...Sorry my spelling is not good.

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Hi,

This has been a really bad year for me too. I have SCA1 and for some reason my health has taken a real tumble this year even though my type of Ataxia is supposed to progress slowly. Depression is your biggest enemy because it makes all your efforts seem futile. The winter seems to make my ataxia worse, probably because you spend more time indoors, I have started using a vitamin D spray which I think helps a bit but of course nothing beats fresh air and sunshine. Try not to give up, that will just make you more depressed and unless you keep as active as possible you will just spend more and more time feeling miserable. Try to take small steps each day even if you try to prepare some veggies or do something to help the person who is doing the cooking, even a few words of gentle advice might be a help if cooking is a new skill for them. Feeling needed will help, I’m sure there is something you can do, have a little think.

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Thank you for all your wonderful support

So much for the crisis team they didn’t call me back.

I haven’t got out of bed for 3 days and I’m so very depressed.

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😳 That’s really not good enough. Bev, can you contact them again, please. xB

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Hi x. B.

I contacted them again and the admitted me to hospital. I waited 13 hours before seeing a psychiatric nurse who whilst empathetic said my problem was psychological and not psychiatric so no medication review but he did talk a lot regarding my acceptance of Ataxia so basically it’s down to me. It’s not very easy to come to terms with but I’m not going to get better without accepting it

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🤔 Acceptance is far from easy, I think that’s one thing we’d all agree on, I would be the first to say I’ve struggled in the past, and it still continues occasionally.

It’s true, the answer lies within ourselves. Everyone has different strengths they can draw on to try and come to terms with the changes that are occurring. Bev, I know from our correspondence over the years, that you do have a lot of inner strength and determination🙂 xB

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I’m going to try B xx

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Have you not got any family close to you to give you support. They may not fully understand the condition but their support matters. When we are in dark places it is hard to see any light. Pick up the phone, ring your GP or the crisis team. Just one phone call. x

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Dear Bevvick 1964, I'm so sorry you're feeling depressed due to your ataxia worsening! I'm no doctor, but would recommend you contact your neurologist/GP and see about getting on an anti-deppresent. I've been on one for over twenty years-a looong story (before I was officially diagnosed with ataxia 15 years ago, although I had very minor symptoms starting about 8 years before diagnosis) and it has really helped me handle things better! Ataxia is extremely challenging, frustrating and relentless! I also lost my dad, my aunt and an uncle all in the space of a month! Yikes! Stress (in my very humble opinion) makes ataxia worse! All these deaths has effected my ataxia adversely! Medicated with alchohol also makes ataxia worse, as it effects the cerebellum which is responsible for coordination and balance. My best to you..., ;o)

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The condition we all have is awful, we can't pretend otherwise but we all have to learn to live with it, with its symptoms, with the restrictions it imposes on us and for me worst of all with the realisation that its getting worse month by month. When all that is said and done we do really have to live with it. We now have to take our pleasures when and where we can but often in a different way, a way determined by the limitations ataxia has placed upon us. Although we may no longer go hill walking or line dancing we can still love our nearest and dearest and be loved by them ... and know it. Music can still give pleasure as can drama or a novel, even though the latter may now have to be listened to rather than read. I can no longer cook as I can't take the movement around the kitchen which it requires but I enjoy the food of others and have to settle for that.

Sorry for the sermon my friend but such things I have to tell myself...... daily. Take the good advice that all the other respondents have given then set about your day as best you can.

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