My name is Mark

[markwyoming]

Hi Everyone. My name is Mark. I wanted to share our story and basically just say hello.

My wife has had balance problems since I first met her over 12 years ago. We’ve been married for nearly 11 years now. She has never looked very fluid in her movements. She used to run somewhat but over the years, had backed away from it.
She has always been very active in life and SUCH a positive person. I love her dearly. Since her hand writing became challenged several years ago, and more recently she sensed other things were off, we were referred to a neurologist and diagnosed with CA in October of 2017. It sort of connected the dots for us on many things in life we have seen, but not fully understood for quite sometime. Not positive to learn that she has CA, but it did clarify things for us a bit. We went through comprehensive genetic testing which were inconclusive in demonstrating a genetic condition (very stressful and frustrating). She has no familial history of this condition. We have two children and it was a very stressful time in trying to do the genetic testing. After many neurologist visist and investigation, we are still unclear as to the cause (genetic or non). Our neurologist (Denver - Dr. Seeberger) believes that we can expect the same sort of progression that we have (unknowingly) experienced. My wife is in great physical health and has dedicated herself to working hard in the gym (and downstairs on our spin bike and work out equipment) as well as eating well.
I’m following suit and we are both in great shape. Sort of like that Pulp Fiction line… “My wife’s a vegetarian… pretty much makes me a vegetarian” Ha. She’s doing well all in all, but has issues with her walk and very mildly with her speach. She does not use any assisted devices yet. She is not a stubborn person and will definitely take help where she needs it. She’s great and I am very proud of her dedication and persistence in dong what she can to stay healthy.

I’ve felt scared for quite a while now since learning of this condition last year. I feel like I have gone through a process of acceptance and planning for our future, but still feel scared. I’ve started the process for seeing a counselor just to keep strong mentally and maybe learn more of how to frame things for myself. I have many questions that race through my mind though about the future… Will she be able to be independent in years to come (driving, showering, cooking, cleaning, exercising, daily stuff…?) Can people remain independent? I hope these questions dont sound selfish. I plan to help her every step of the way, but wonder if I can take all this on if things get really challenging. I know enough about this condition to know that there is a spectrum of symptoms and severity so my questions may be difficult to answer. Just expressing some of my question marks.

Luckily I have a stable job and very good insurance which has been helpful with the recent medical appointments. She is still working and plans to as long as she can. She has disability insurance through her work so that is something that we may need down the road as well.

We have two young children (6 & 8) whom have no knowledge of our diagnosis yet. As far as they know, their Mom is still just their Mom and we are moving forward in our life. You have use what you’ve got and move forward. Our strategy is that we plan to discuss with them what we know when/if the topic comes up. We dont want to overwhelm them with information and scare them with details. We want to control the narrative I suppose.

We have a dog who is a pain in the butt, but a wonderful part of our life too (black Labrador)

We are SUPER active in the outdoors too. Rafting, camping, traveling, etc. I suppose some of my fears have been related to thinking that we wont be able to do the things we want to do. I have overcome this fear (for the most part) by dedicating that we will adapt the best we can and keep active and perusing what we enjoy. I hope that is possible.

We are a good family (obviously I’m bias ).

Thanks for your time in reading our story. If you have any advice or feedback on how to frame the thought of “the future” and perusing the lifestyle you want, as well as the thoughts on family and children. If anyone has advice for a spouse of someone with this condition I’d be happy to hear from you as well.

Thanks,
Mark

[Chas521]

Welcome to you both. It is very important for your wife to continue to exercise. Not to exhaustion but to continue. Plus it’s also important for you as a caretaker to remain as healthy as you can. Just keep being there for her. BTW, it sounds like you’re doing a wonderful job.

Do a search for my introductory post. You may find some information.

Hi - my introduction

I’m new here but I have been a regular contributor at the old NAF forum BB. Nevertheless, please let me introduce myself with a history of sorts. I am now 71 years old and I first noticed that something was wrong when I was 21. So, I have been dealing with this Ataxia [SCA] for over 50 years. I have never been interested in what type that I have so never did any genetic tests but did have MRIs. I’m always interested regarding therapies and of course, cures as is everyone else here. My symp…

Almost forgot, this illness is somewhat individual. How someone is affected does not mean that is definitely going to be your story.

EDIT: It’s pretty important for both of you to keep coming back here. Not only for the latest information but for the “support” of folks that are in your same boat and understand.

[Beryl_Park]

Hi Mark, welcome Yours certainly sounds like a very happy family And, your lifestyle of exercise, and eating well, is bound to stand your Wife in good stead

After all this exhaustive testing you’ll realise how difficult it is to get a definite diagnosis, many of us have followed the same laborious course I don’t yet have a definite diagnosis, just a basic one of ‘Cerebellar Ataxia’ even after donating DNA for a national screening project here in the UK.

My symptoms became apparent when I was in my 30s, I knew something odd was happening, but what exactly Despite symptoms progressing, I didn’t manage to get the Ataxia diagnosis until 2011, I was 61 So, getting a firm diagnosis much later, meant that my children were then adults, and able to comprehend the situation.

The name of the game is ‘adaptability’. No matter what type of Ataxia is involved. You need to be flexible in outlook and pretty much go with the flow.

If you haven’t already thought about it, you might find it helpful to contact a local (obviously it depends where you live ) Ataxia Support Group. Speaking to others face to face who cope with similar challenges can be invaluable Many members will have partners who act as Carers, so that would be useful for you. You can find a list of groups, state by state, on www.ataxia.org

Very best wishes to you all xB

[Shoaib]

Hi Mark,
I am not sure if a difference exists between “Cerebellar Ataxia” (CA) and “Spinocerebellar Ataxia” (SCA). It may be just semantics. I had been diagnosed with SCA-6 with genetic testings. And so far, there is no known cure for it. Cerebral Ataxia can be “inherited” (Hereditary) or “acquired”.
I am not a neurologist, but I have done extensive reading on hereditary SCA and from my own experience have learned the following:

1. Daily “Physical exercise” with stretching and balancing, helps with reducing the progression of the disease. It not only elevates your mood, but also keeps you active and hopeful of the future.
2. About 37% of the patients who have hereditary SCA also have “Gluten Intolerance”. It is a “non-celiac” Gluten allergy and there are studies to show that Antibodies to gluten can also adversely effect cerebellum and cause “Gluten Ataxia”. Gluten Free diet may be helpful in those individuals. It may not cure your ataxia.
3. Alcohol of any kind, further depresses the cerebellum and make the ataxia worse.
4. Internet has made it easier to keep track on the latest research on SCA. I had been on BHV-4157 trial for a year, with no significant success.
5. “Depression” is very commonly associated with SCA. I will be surprised if someone is not depressed for not being able to do the things, you think you should be able to do at this age. Keep an open mind on “anti-depressants”.
6. Ataxia and muscle spasms go hand in hand. There is a lot of discussion on this board about “Dystonia” , “Back pains” and others. Even though muscle relaxants are supposed to help with these spasms (despite “sleepiness” as known side effect) I have found that stretching for 15-20 minutes daily before exercise or going for walks does me most good.
7. My wife understands my disability, and although does not engage in “patronizing”, helps me out where I need the most.
8. I feel very hopeful. And I know that, my SCA is not going to significantly shorten my life expectancy, and it is up to me for positioning myself for what’s yet to come, good or challenging.

Hope both of you may team up together and embrace anything life throws at you. Isn’t that what’s it all about?

[ErinHry]

Hi Mark-
I just have to applaud you, I love that you refer to this as “Our Story”.
I am 44, married mother of 2 daughters & I have SCA6 like my father. It is horrible to look ahead with this disease, but we try our best every day for our families.
Welcome to the group!

[Shoaib]

Hi Erin,
I am surprised and saddened that you are symptomatic at age 44. I was diagnosed with SCA 6 at age 60 ( now I am 66) even though my symptoms started after age 50. My father never had genetic testing and was never diagnosed. He passed away almost 17 years ago at age 85 from cardiac disease (unrelated to ataxia) . He did not have access to genetic testing and was told by some poorly qualified doctor ( of third world country) that he had a “stroke”. But my symptoms mimics his and my mother is still alive and free of ataxia. So I must have gotten it though him as an “autosomal dominant” genetic mutation. I am watching everyday for new research on hereditary SCA. Good luck to you and your daughters.

[Alan_T]

Such sage words

“The name of the game is ‘adaptability’. No matter what type of Ataxia is involved. You need to be flexible in outlook and pretty much go with the flow.”

add in be “POSITIVE”

[Louise78]

I just came across this today and decided to save it. It fits!