Freaked out: I have been diagnosed with ataxia and... - Ataxia UK

Ataxia UK
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Freaked out

I have been diagnosed with ataxia and the many symtoms I've had for a few yrs make sense.

I am now totally freaked out and can think of nothing but suicide. I have not read anyone talking about depression. How do u handle this? How do u live.?

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So sorry to hear this. I too had many of these same thoughts 2 yrs ago when first diagnosed.

I went into a depression and started to suffer from panic attacks and anxiety on an ongoing basis. I sought help from my family doctor and started counseling right away. I am still in counseling now and it has helped me immensely. When I come across something I can no longer do I look for two things that I can do. I remind myself that I have a lot to live for, my children, husband, grandchildren and my friends. You're certainly in the right place and should find a lot of support here. Good luck to you I'll keep you in my prayers.

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My 10 year old grandson has been diagnosed with cancer (leukaemia) and my husband (prostate).. Watching their treatment made me realise that things for me could be worse. I started to laugh at myself and appreciate what I CAN do not what I can’t. I also started noticing just how many disabled people there really are and empathised with them; noticed how kind (or not) people are when shopping; where the pavement was rough or dropped; smiled more; I stopped feeling sorry for myself. Like you, at first, I found it all too much to accept but you will Carolss. Sadly, I can no longer do the 4 things I most love - gardening, travelling, writing and dancing. Get yourself a blue badge and face up to the disability. Don’t let Ataxia win. Best wishes 🤗

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What’s a “blue badge”?

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For parkng

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You have to distinguish between legitimate sadness over your diagnosis and depression.. Drugs can help... so can the outdoors, exercise, a strong commitment to someone or something, gardening..... Hope is a powerful tooL. I, too, have had some pretty dark thoughts One really never gets over them, Just dont go there and realoze that your life has changed,Be well. xN

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So sorry to hear this. I think we all have thoughts but your inner strength picks you up and gets you through.

Xx

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I have suffered depression for many years but always seemed to manage it ok until I finally had to stop working due to the ataxia & my other illnesses. I think it’s worse than ever when you’re stuck at home alone everyday as your mind has nothing else to think of keep it occupied you’re just stuck in your own thoughts. I totally get you & would advise you to please see your gp for help as a first port of call, medication along with talking therapy can really help. Please make an appointment with your gp on Monday morning.

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Please get to a psychiatrist! I felt the same way a few years ago (hadn’t been diagnosed yet), found an amazing psychiatrist who worked with me over several months to get my meds right! Now that I’m properly medicated I’m OK....not great but much better.

My type of ataxia is “aquired”, resulting from a ruptured brain abscess that led to a nasty case of bacterial meningitis. I was told by every doc on my case that I should not have lived...somedays I wish I would have 😐

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Hi Carolss, the best thing that I found, was to take my mind off illness doing my hobbies. I can feel down often. So if I feel down I do things I like doing and try not to even think about illness. I like to paint, do crosswords, jigsaws and computer games, I find this does help. I bought a diary, with the title, say yes to new adventures, with to do lists, your goals and motivational quote, so I am going to try to fill this diary this year. I also rescued a cat, she is very gentle natured, loving and great company, she helps me too. Have a word with your doctor also and ask for help. I take diazepam very low dose only on occasion not every day, which helps my tremors and stress when too bad, as it relaxes muscles. Wishing you well

Suzie

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yes its very frightening but adjust your life towards what you can do, put your attention on what you can do, think of the people you love. you are bigger than your diagnosis! You can weather this! xx

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Dear Carolss, Ataxia is very challenging, as well as frustrating! I've had ataxia over 20 years and just found out my ataxia is due to Niemann Pick C disease (through genetic exome testing) in 2017. I'm almost 65 years old now. Anyway, I started taking an antidepressant over 20 years ago, first for a side effect of a drug I was on for a cardiac arrhythmia I was born with. I had cardiac surgery to repair the arrhythmia, started feeling better and then found out my first husband (the father of our two children, who were 12 and 14 at the time) had terminal cancer. Therefore, my doctor told me to stay on the antidepressant. He eventually died and a year after (at 43), I started having ataxia symptoms. Once again I was adviced to stay on the antidepressant. Eventually I was diagnosed with ataxia (at 49). Anyway, I'm glad I'm on the antidepressant, as people with a chronic health problem can suffer from depression. I also talked with a psychologist several times early on, which was very helpful in helping me deal. Although my ataxia has progressed over the years and will continue to do so, I try to count my blessings (there's so many), as things certainly could be so much worse! Find things you can still do that make you happy! I color in coloring books, as It helps my coordination! I also like to make greeting cards, as I can do that (also coloring) while sitting down. Keeping as busy as possible takes your mind of yourself! I worked as a social worker for 28 years but had to medically retire 12 years ago due to my ataxia! I exercise (safely, of course) for strength and balance. Physical therapy (a few sessions each year) has helped also! Remember, you are NOT alone in your journey! My best you...,;o)

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the dark night of the soul... it's tough. I find my depression comes in waves. I noticed I have an exit strategy just behind my surface thoughts... with ataxia, I wouldn't give up just yet. there are so many types and everyone's progression differs. stick around a while and try to do something everyday just for you that makes you smile (I watch silly comedies and cuddle with my pets). also antidepressants might be a good idea, even if only temporarily and I like therapy because it's a place I can say whatever and not worry about hurting a loved one's feelings. stay strong.

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