So sad

[bevvick1964]

I’m struggling my emotional situation and can’t come to terms with it

I’ve had Ataxia for 10 years and I’m really stressed and don’t know what to do

I’m tearful and angry all the time and don’t know why

Play help me someone

[february]

Dear Bevvick1964, Ataxia is very frustrating and challenging! I've had ataxia 20+ years, diagnosed when I was 49 years of age, although I had extremely minor symptoms starting about 43 years of age. I'm 65 now and up until 2017 my ataxia was due to an unknown cause. I finally found out in 2017, through genetic exome testing, then a skin biopsy folowed by a blood test, that my ataxia was due to Niemann Pick C disease. My ataxia is progressive and has progressed over the years! Anyway, this is not all about me! Just wanted to give you a bit of my story. Several years ago, I saw a therapist because I was having a difficult time coping with my ataxia. I found this to be extremely helpful! I've also been on an anti-depressant (started initially for a different reason) 20+ years and this helps me greatly! It's not a happy pill, just helps me handle this better! I still have mini pity parties, although they're short lived! Try to concentrate on the things you can still do and don't dwell on what you can no longer do. Also, do something for you that you really enjoy, I like to make greeting cards and draw. No, I'm not a good as I used to be, but who cares...,ha! Also try to count your blessings. And remember, you're not alone in your ataxia journey. One of my favorite mantra's is "a woman or man is like a tea bag, as they never know how strong they can be until they get into hot water". My best to you ;o)

[Staggy1]

Sweetie I really feel for you. I didn't want to take tablets but my doctor put me on Fluoxetine, one a day, and they help me. Go and talk to your GP. X

[ddmagee1]

Stress can really get to a person, and it becomes especially difficult, when one has a debilitating chronic illness! I have been diagnosed with Cerebellar Ataxia, which I’ve had my entire lifetime, and just a few years ago, I was diagnosed with Parkinson’s Disease! So, I can relate, sometimes feeling angry and tearful at the same time. My wife is ill with heart failure and kidney failure. We face many challenges, together. My Mom recently died in a painful, tragic way. My stress levels have gotten way out of hand. My Doctor has helped me by prescribing anti-anxiety pills, and fluoxetine, an anti-depressant. Perhaps you could talk to your doctor about your emotional, stressful situation, and you could get some relief, like I have! Wishing you the best!

[ww-wibblywobbly]

Dear bevvick,

I'm sorry you're feeling this way, but I completely understand. To be honest if I didn't take antidepressants I wouldn't be here any longer.

I take 2x50mg, one in morning and one in the evening of ixel (chlorhydrate of milnacipran) antidepressants. They makes a huge difference. They are not prosac or happy pills. I've always been against antidepressants but I can't emphasize how much better I feel. The other thing with depression is that the Ataxia is literally worse - maybe it's just a viewpoint but I think it really is worse.

I also saw a counsellor for a few years who works with disabled people. I found that very helpful too. The normal counselling for everyone I didn't find nearly as helpful. If I need to see her she's only a phone call away from an appointment.

I still have bad moments when I frustrated and have pity cries. But I manage to pull myself out of them now.

Go to see your GP and ask for help. My GP was really helpful. I found going there initially to ask for emotional help really hard, it was against my natural personality, but it was one of the best things I ever did.

I also occasionally take alprozolam, an anti anxiety tablet. I take it when I can't sleep cos my head won't stop thinking of things. If you get a prescription for these then let me know as I've discovered the best way for them to work.

Please don't struggle on your own. Seek help and continue to post on here to keep us up to date, rant, express yourself, whatever you want. We're all here for you, and are probably the people who understand the most.

Take care

Write soon

Love

Alison xx

[Plain]

Hello bevvick 1964, I do feel for you, Find doing things that help the frustration of Ataxia , try and find something you enjoy doing. I spend time on You Tube, watching The Bald Explorer . He makes short videos which are such a joy to watch. Also listen to audio books. Do puzzles on my Tablet. I’m 74 and don’t get out very often. Do you have a favourite Author or a show on the television . It’s all so difficult coming to terms not being able to do things , but just try to find something however small to enjoy each day. . Hope this helps. Take care.

[ConfusedAtaxian]

Hugs for you. The others are right - just focus on what you can do, forget what you used to and explain your feelings to your GP. 🤗

[pinjem]

Thank you for sharing. I think we all feel like this at least some of the time and the replies are very helpful to me as well. It is difficult to see your way 'out' of this but better times will return, my definition of 'better' has changed, little things which are overlooked when all is well can bring delight and are just as important. Best wishes.

[benning]

IT TOOK ME AROUND 10/15 YEARS PLUS TO COME TO TERMS WITH MY ATAXIA,IT TAKES A LOT OF SOUL SEARCHING/RESEARCH AND MOST OF ALL ,MENTAL TOUGHNESS. THINGS WILL GET BETTER,PEACE OUT.STAY POSITIVE.

[bevvick1964]

Thank you for all your wonderful support

I’m just feeling sorry for myself atm things will get better mood wise they usually do however my symptoms have worsened of late and I’m not coping well with it

I’m shaking so much and more or less in a wheelchair now

I read constantly as there’s not much else I can do as due to my shaking hands I can’t cook anymore which was a favourite hobby plus I can’t drive anymore I’m becoming more dependent on my husband and I hate it

I’m already on antidepressants and have seen councillors and I do have better days but it’s very difficult to come to terms with it even after 10 years

I swore it wouldn’t beat me and I’ll try not to let it although it’s getting harder

My numerous injuries are getting worse due to my increased falling I’m surprised that I haven’t broken anything yet

Thank you so very much for your support I’ll be fine

Much love 💕

[Faith3012 in reply to bevvick1964]

Bewick, we all must stay strong to fight this stupid sickness . “In life, we don’t wait for the rain to stop ! We must learn to dance in the rain “ You are not alone !

[Namitaytrev]

I pray the Lord comfort you! Turn to Him. It’s in times like this that bring us to Him. I found out that I had SCA3 when I was 46 years old and going thru a divorce because my husband was having affairs. I was completely devastated by the divorce and the diagnosis was the icing on the cake! I had watched my mother fight this horrible disease for 20 years and it took her life, and a big piece of my heart. Then when I got the diagnosis, it was more than I could handle... At that time, I let the Lord into my life and gave it to Him. I live in peace knowing He will never leave me. He never gives us more than we can handle. You too are strong and can find your strength in Him. I have SCA3 but mentally I am a stronger person because each day I trust Him. I know He has a plan for me and He has a plan for you too. I may not know what it is, but I trust Him.

[Rhiny99]

(Hugs) to you!

[Litty]

Everyone has their own way of coping, I do find my ataxia very hard at times. Unfortunately there is nothing anyone can do we just have do our best for our families - it is so hard sometimes. Rant here if it helps - we so understand xx

[Mneutz]

Dear bevvick1964

I too have ataxia. SCA6. Hereditary, I took care of my mom for over 40years. She just passed in January. My brother had it and could not cope and took his life in his 40’s.

Everyday I am blessed to give thanks for things I can still do independently. Find something that gives you a sense of accomplishment. Helping others can help you. At our church you can fold bulletins and mail to people who are homebound. Baking for bereavement committee. If I feel frustrated about something I count my blessings. I’ve worked with handicap children who were excited to brush their own hair, or feed themselves. I think about 50 years of being able to work and live without serious problems. My future years may not seem ideal but I see the sun, rain, sky, and my kids flourish and grow. It’s a beautiful world!! I pray you can see the positives!! You can do it!! My time on earth is here for others not me. God put me here to have positive effects for others, not me.

Wishing you positivity

Martina

[Mneutz]

Dear bevvick1964

Also I believe vitamins contribute in big way to help ataxia symptoms. I take Tru Niagen (2 pills a day) Vit. B12 5,000mcg (1 pill/day) Vit D3 (1pill/day) COQ10, 100 mg (1 pill/day) and Fish oil 2,000 mg (by Usana) 1 pill/day. All help with brain health and in return helps with shaking less.

God Bless Martina

[Veteran250 in reply to Mneutz]

Bev..... I live in Gravesend, and I think you live in painters Ash..... if you would like me to visit you at home, private message me, but I’m up in Oxford until Thursday.

Don 😀👍

[kuchee]

Hats off to all brave people on this forum. My gratitude to all member!

Bev, for you i would just say" POSITIVE THINKING MAKE BROKEN LIFE BEAUTIFUL"

Cheers!

[sunvox]

Never try something based on the remarks of an internet quack without first discussing the issue with your doctor.

-

Most of you on HU have heard me before but let me say it again:

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I am 53 and have SCA1 which is the fastest progressing form of genetic ataxia. I had early symptoms 3 (almost 4 now) years ago, but today I am symptom free and feel better than I have in a decade. In addition several people around the world with both SCA1 and SCA3 who are following my precise example are reporting similar results.

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It is not possible for a placebo effect to stop the progression of a disease like SCA1 for 3 years so MAYBE I'm on to something. Trouble is my regimen is NOT for the faint of heart and requires discipline on my part to maintain. I could easily complain about an upset stomach or tired legs or countless other excuses to stop me, but I do not let those issues get in the way. Nor do I believe there is any piece of what I am doing that is more important than any other. I believe nay I know it is the entirety of my regimen that is having an impact on my life.

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healthunlocked.com/ataxia-u...

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Joe in NY

[auntiesally]

Please go and see your doctor, have you ever been prescribed citralaphan? It is a anti depressant, it helps me as I often feel like you, wish I had a magic wand to help you.

Take care