Our stories are important. Will you share yours?

General
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By far NOT on your own, no. A blessing or a burden, whichever: we ARE the chosen ones. And I KNOW it's best for ME to have it and NOT my loved ones. Now THAT would really get me worried, Whole other life here compared with the speedy gonzales I used to be. However, the brain is still speedy as ever, fortunately! NO degeneration there so I love to fill my time with all kinds of things I like to do: devouring books, doing the crypto puzzles, knitting is very relaxing, slowly of course but creating and kind of feels like doing yoga. And last but not least, I play bridge on line just about every day. A true addiction. No need to go outdoors and the world within my reach anyway:):) So Artistic, focus on the things you CAN do and do away with the lingering on the things you can't. There's no point is there. Only saddens you, Take care and feel free to ask me more. Hugs from Holland, Elle.

Artistic22 said:

Hello Everyone
I was diagnosed in early 2012, shortly after an MRI revealed a rare lipoma tumor in my brain. At first I simply experienced general imbalance problems & could no longer ride a bicycle safely. One night I woke up to visit the bathroom, lost my balance, fell and broke my back. Although I recovered, the healing time was extended due to my inability to safely move about in a back brace. I suffered anxiety, depression, panic attacks, insomnia, yeah, the list goes on. By the time I was allowed to return to work, I was more or less unable to do my job. Handwriting is very difficult, and typing - even this short message with one finger is very tiring. Now I no longer can use small hand tools, things like getting an eyelash out of my eye are nearly impossible. I lost my job and ended up having to move across the country (affordable living). Thanksgiving was lonely and Christmas was worse. When I found this website I read the comments and could hardly believe there are others like me with similar frustrations.
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Hello. My husband was diagnosed with SCA2 over two years ago at 26. What age were you diagnosed and what are your current symptoms? I would love to talk back and forth.

43

I so feel for you, I too have the same symptoms, go to P.T. two times a week, my husband thinks I am a fake! Would I want this? I also suffer from panic attacks and see a therapist! I developed some blurriness in my left eye and a pain in the left side of my head, feeling hot and dizzy! Waiting for my doctor to call me back! Maybe another MIR! I get so tired to see my friends at the beach or on cruises, always was a solo act! Solo no more!

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Hi,

It is good to connect with people who suffer like me.

Hi Ozzy, I am atheist too.

I am in my late 40s and was dxd around 2010I cannot speak or write, but use a walker and have not “graduated” to a wheelchair yet.
3 years ago, I fell down and broke my hip.
In hindsight, my neurologist should have prescribed a walker before I fell.

I am hoping for some therapy for Ataxia by 2016.

Looking fwd to interacting with you all.

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I mean by 2020 and not 2016’ that was a mistahe

46

Hi Sheryl_Ashby,
I’m so sorry you have had such a rough time of it. And we have all heard that sayin!g : "life isn’t fair"
And it isn’t fair, but we can’t do anything about it except try to maake the best of the cards we’ve been dealt. You seem to be holding up pretty
well ,and now you have all of us here to vent all you want comma ask for advice and maybe even help someone else along the way.
If your balance is bad and you want to see if something could help,.please ask the doctor. Sometimes meds help and sometimes they just don’t, but you won’t know unless you ask and give the a try
 You don’t have to know what kind of ataxia you have to get treatment. I took meds for 11 years before I knew I had SCA3. With meds I was able to stay employable, and continued working for 12 more yeaes. i was very lucky. Maybe you will find this helpful : Something that could help some of you

It’s a limk to my blog.
We are here to help each other. If you have more questions, I’d be happy to help any way I can.
Best wishes,
Sharon
;

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Ron, I undérstand how you feel. I am also told that suicide is just an easy out. Thanks to my husband I am still here, not sure what would be best for him, to have to take care of me or to mourn my passing.
I am 50yrs old and have ataxia with seizures and just cope day by day. There is no cure so what does one do.

48

I think getting out of the car, or computer chair or the TV is a great idea because of blood clots, People die because they sit too long and don’t try to move and get their blood flowing, I am on Coumadin now for over a year from blood clots. So moving around is great for ataxians and other patients who have movement problems, bed sores is one big problem some ataxians have. So walking or moving is needed for us.

49

Kibby,
Have you tried any meds to see if they help you even a little bit with your symptoms? Sometimes one cannot find a med that helps a particular symptom but it sure doesn’t hurt to ask your doctor if you can try something.

I was fortunate that I responded well to the meds I was given for my symptoms and I was able to continue in the workplace from 2004 to 2014. I was 60 when I “retired”. and now of course I am having more symptoms than 12 years ago., including those annoying tremors.

Please feel free to contact me anytime if you have questions. I don’t wish to speak out of turn or try to push too much at people, so I will leave it up to you to contact me

50

Hi Sharon
Thanks for your kind words.Just saw my Neurologist and GP this week and we talked a lot about my present mood and I’m going to think about meds for the very near future.Glad to hear from someone on this issue.Your fellow Ataxia friend.Libby
P.S. i would love to read more on your experience with Ataxia and how you’re dealing with it

51

I hadn’t thought of this. What a good thought!!

52

when you say opioids can cause ataxia you mean long term use, not a day or two right?

53

Hi, My husband, 56 yrs old now, was diagnosed with Sporadic Ataxia in 2016. He started with unbalance a couple of years before. It took a while to get a correct diagnosis. First Dr., a GP, just gave a handout on falling. It was geared to senior citizens. He was just around 50 at the time. Then, we thought it might be related to heart meds he began taking in 2014 as that is about when we noticed the first symptoms. Cardiologist had us adjust the meds to no avail. Each time he went to the Dr. for something, we brought up the unbalance/feeling dizzy. Finally, when going in for a second bronchitis visit, I mentioned un-equilibrium. This prompted the Dr. to order a CT scan. This is when they found the cerebellum atrophy and sent him to the Neurologist.

After much testing, came to the decision it is not hereditary. Neurologist also stated that in her opinion, he had already had it for at least 5-7 years.

Over the past two years since diagnosis, his gait and speech have steadily gotten worse. He has trouble typing, reading, and is more angry than before. His handwriting is almost illegible and he mostly just sits and watches TV all day. And he keeps worrying about things that in the past was no big deal. Things like if I will leave on time for an appointment, one that has nothing to do with him. He was never a worrier before. He has tried a cane a couple of times but said it does not help him. Maybe he will need PT to train him how to use it? We ended up renting a motorized scooter when we went to Disneyland this past year. That worked out well for him, all except for the people who would not clear a path for him. I will be considering getting one for him in the future.

One good thing is we have some awesome friends and one takes him walking everyday M-F. They do 5 miles. John (my husband) says he has to concentrate in order to not fall, but will keep it up until he no longer can. Neurologist said this has kept his core strong and is delaying symptoms a bit. He wavers a lot when he stands, but the strong core keeps him upright.

Currently the most difficult thing for me as his wife and care taker is losing my best friend. We have lost much of our verbal interaction and intimacy has gotten very difficult as he has trouble maneuvering. Up until a year ago it was very active and fulfilling. (Do any of you men experience ED with the ataxia?)

He drove a trolley for a living and was forced to retire after diagnosis. We have not found anything else that he can do, so he is embracing the retirement.

It is difficult to watch him slowly deteriorate. And I often wonder how long he has and what it will be like at the end. I comb these blogs looking for answers, but it looks as if each person is different and progress at varying speeds. I am a planner the type of person that does better with the truth and knowing what is ahead than being surprised by it.

I welcome any advice.

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:slightly_smiling_face: You replied to a post from 2016, it’s possible that person may respond quicker if you send them a private message (click on their profile picture, and then on the blue message box). ED has been discussed previously, but not very often :smirk: We women tend to be fairly open and will discuss personal problems, men are often quite private. A while since, I looked for information re ED for someone else, it’s possible you might find a discussion on an MS or Parkinson’s site, it’s worth a look :slightly_smiling_face: Ben’s Friends have a separate Caregiver Support Group, they might also have had discussions on the subject. https://www.facebook.com/groups/caregiversupportcommunity
Getting an accurate diagnosis can be drawn out, very frustrating and stressful, in fact it’s not unknown for it to take several years :smirk: And as you’ve realised, progression can vary enormously, so it’s very hard to generalise on anything other than the obvious basic symptoms. No-one who’s diagnosed likes to look too far ahead, it’s better to focus on what you can do now, and just go with the flow :slightly_smiling_face:
I wonder, would your husband try using a Rollator, since he likes walking :thinking: I was amazed how much better and natural my own gait became :slightly_smiling_face: Ask him to try pushing a cart at the supermarket, that would give him an idea of any improvement :slightly_smiling_face: I love my Rollator, somehow it takes the strain from ‘multitasking’ and I can look around without fear of falling :slightly_smiling_face:
It could also be very helpful for you both to join your nearest Ataxia Support Group :slightly_smiling_face: Have a look for links on www.ataxia.org Actually speaking face to face with someone else coping with the same challenges can be invaluable :slightly_smiling_face: xB

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Thanks! I am new to blogging and don’t quite understand the flow.
I appreciate all your feedback. I have looked into the local support groups, so far the closest one is a two hour drive. My husband has always been a quiet, non-social guy and even more so now. He is not the least interested in a support group. I plan to attend some time soon. Also, thanks for the Caregiver site. I had not found that yet, it looks perfect for me.

What is a rollator? This sounds good as he does like to use a shopping cart.

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, :slightly_smiling_face: Before ataxia, I had never used a computer for social interaction, now I’m rarely off my iPad, googling one thing or another :wink: Ring your nearest group contact just for a chat, group leaders are very welcoming and always eager to receive new members. It could be that they can put you in touch with another member who actually lives nearer to you :slightly_smiling_face: But then again you don’t have to limit yourself to the nearest group, some people want to specifically make contact with another person coping with the same type of ataxia, so you can expand your search if you’d like to :slightly_smiling_face: There are no rules :slightly_smiling_face: And, there are also several Facebook groups, there’s no limit to the amount of contact available :slightly_smiling_face:
Put simply, rollators are simply walkers with a wheel on the end of each leg. Google Rollators and you’ll find a wide variety of types, there are even some called ‘fore arm’ or ‘upright’ whereby a person can rest their forearms/weight on the support to guide the rollator. Most 4 wheeled rollators have a seat, this can be very handy. There are also indoor rollators, which are narrower and usually have a useful tray :slightly_smiling_face: You can often find rollators on display at larger Supermarkets such as Walmart, that would be an easy way of trying one out :slightly_smiling_face: Most of us have resented having to finally give in and acknowledge the fact that safety is all important, and we need a least to use a walking stick/cane :smirk: After that comes the realisation that a rollator offers more manoeuvrability :slightly_smiling_face: Something to bear in mind when choosing a rollator, some people feel more confident with a heavier weighted type, and some people have widely spaced gait. If someone has widely spaced gait, their feet are likely to knock against the wheels as they walk, so it’s a good idea to try out various types before coming to a decision :slightly_smiling_face: And then you can often order your final choice from Amazon :slightly_smiling_face: xB

1 Like
57

I’m home. Bound in a wheelchair due a heatstroke that turned into cerebellar ATAXIA
My cognitive abilities are intact and movement of my arms remains.

Worked until July 2014 when I was struck by a heatstroke that caused cerebellar ataxia; which took my balance, speech and movement.

I been documenting some of my dairy experiences in a YouTube channel created for this specific purpose.

I’m a click away, hope to hear from you guys :heart: