Play House? Please xo

:smirk: For a long time before I was actually diagnosed, I had terrible fatigue. My children were heading to their teens, had loads of extra curricular activities and needed ferrying around. It’s just a blurr now when I look back, I feel guilty for being a ‘wet blanket’ most of the time. But, I didn’t know what was wrong with me. Now, I realise that not all Ataxias follow the same path with symptoms, some symptoms may be regarded as insignificant by a family doctor, and it’s almost a crisis point before a Neurologist gets involved.

Exercise within caperbility, that’s supposed to be everyone’s mantra. Personally, I loath prescribed exercise, I always have since being at school, I never was athletic in any sense of the word :wink: Although when you have babies and young children to run around after, that must come under the heading of exercise, and I was always active :slightly_smiling_face:

In more recent years, I had a phase when ‘going to the gym’ was popular, mind you I only liked certain equipment, and didn’t like to reach the point where I ‘glowed’ ( ladies don’t sweat :wink: ) Then we moved house, and took on the responsibility of an enormous garden :hushed: That itself has been a real workout :wink: At first I could pull my weight, and it was mainly done for pleasure anyway :slightly_smiling_face: But now, potting a plant can be an achievement :slightly_smiling_face:

So, to ward off stiffness, flabby underarms (ladies) and keep muscles flexible, I’d encourage anybody with ataxia to make the most of any opportunity to move around more. Nobody needs to be an Olympic athlete, just don’t be a couch potato :wink: xB

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I potted a plant today. Split an orchid up. Not much exercise I know but that was about my limit😡

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:slightly_smiling_face: ((hugs)) I felt so sorry for my poor spider plant, my husband had potted it ages ago and it was completely potbound. Fingers crossed it has a new lease of life :wink: It’s a beautiful warm sunny morning here in Newcastle :sunglasses: xB

It is lovely and sunny here in South Lincolnshire. Bit too warm in the sunshine, especially for the dog, who is elderly, so I am getting my exercise bringing her back indoors First time I have posted on this site since I joined several months. I found it a bit confusing at first so gave up till yesterday😮

Ps spider plants are prolific growers

:joy: yes. Lucky for me they’re hard to kill off :wink: I also have other houseplants that are just about holding their own…one of them I’ve actually had since 1985. Don’t let this give you the impression I have green fingers :joy: Most of what lefts of the original arrangement is ivy. Harder to kill than a spider plant :wink: Also, I have a couple of orchids that were presents, they’ve been repotted but aren’t flourishing. My friend keeps hers on a northfacing windowsill, maybe I should move them :thinking: xB

Oh Beryl! Isn’t it terrible I find comfort in knowing of your discomfort.

I think I have laid in that head position for 3 years, of course I went through the “push through it” phase. The “I just need totry, just to know”
Well now I know, I know that if I nod off and my head drops I go into a violent vertigo (as I call it) spell that lasts a few minutes followed by HEAVY head and fog and discomfort, must like a terrible hangover within a minutes time.

I feel like a prisoner.

Have we talked about Nystagmus yet? That along with the Vertigo is hardest for me to manage. I see others with disabilities affecting their mobility like mine and and think hoe I just wish I was managing my Ataxia. The Ataxia is hard and a true life change, but for me the Nystagmus and Vertigo make it so unbearable.

When I was ambulanced in Beryl I underwent every test for anything possible.
Two Neurologists at different times gave their best guess answer they were

EA2
SCA6

Apparently the Vertigo, Nystagmus AND Ataxia were unusual together.
I feel failed by many doctors, so hard to carry this paper trail and appointments etc AND keep a family togeth. No everything’s fine, right?! :tired_face:

Take care everyone :pray:t3:

I have been watching My Last Days on the CW Network. It’s truly important to put things into perspective more often. Although some feel the opposite. My mother sees me as pessimistic for viewing such tragedy.

Thank you for this link Shoaib

Erin aim sorry to hear of your struggle at any age of course but mid life has its challenges.

I find some comfort in knowing you share these similarities with your family, even though I’m sure everyone would cure the other if possible.

Did you have the idea that this was a strong possibility for you?

No one in my family that I know of has anything similar. fyi!

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:slightly_smiling_face: Louise, back when I was battling constant double vision (combined with vertigo, Nystagmus and ataxia) I always felt that if I could just focus normally, it would be one less thing to have to multi task, and I could cope. Eventually, surgery made a big difference and I’m so grateful :slightly_smiling_face:

Nystagmus is something else :smirk: Mine is ‘downbeat’. Some days are better than others, and I have wondered if it has any bearing on how I’m actually feeling myself that particular day :thinking: I haven’t tried any of the medications prescribed for Nystagmus but, I read about a pioneering surgical procedure that was interesting. Small magnets were placed in someone’s eyes to counteract Nystagmus, and it was successful :hushed: This was carried out at Moorfields Eye Hospital in London.

I agree with you, specific symptoms can make you feel very ‘isolated’. The reason for this must vary enormously within the ataxia community, when you consider just how diverse symptoms can be.

Currently, I’d like to think mental focus and memory would improve :woman_facepalming: Not that they’re bottom of the list you understand :wink: Another thing that disconcerts me is, not noticing time passing… Apparently this is called Dischronometria. For instance, if I’m engrossed in answering a post, time has no meaning to me, I’m constantly astonished as to how much time has passed. An hour can go by and I’m totally adrift with my thoughts :thinking:

Like many of us here, I feel as though I’ve had virtually every test available and still be in limbo as to the reason for my situation :thinking: And, I’d really like to know if it’s actually genetic :thinking: On the days when mental focus is ‘on the rise’… curiosity is my motivation :wink: xB

B - A good morning to you and all out there. I have been up since 6, was able to read your post but my head has the usual fog and pulling feeling along with nystagmus which I feel is worse from head positions S well as stress or anxiety at given moments. Let’s say I see a dog almost hit by a car, I get terrible Nystagmus and feel completely disabled. I call it nystagmus blind at times. It has taught me to find strength, especially during what I call that nystagmus episode. Other times it’s calm, but there,

I have upward slight right beating Nystagmus…

This brings me to a question I will next start a new topic with, so go check :slight_smile:

As far as your time perception situation now that I really think about it it makes sense. Don’t you also feel at times you’ve found this space where just you exist at times.

I have two teens - younger by 4 years when I was first hospitalized and changed I feel fairly quickly within a months time. AND my sweet Kindergartner. 3 for me.

34 at time sickness Ataxia Vertigo Nustagmus hit

Following first trip to ER for bad bad head cold.
Home with “nasty” sinus infection.

5 days on antibiotics nothing changed sicker and sicker then the vertigo and vomiting.

No diagnosis. I was stabilized and nourished for about 2 weeks ith 4 Days on one medication then 4 on another.
Couldn’t move much, no shower, fall risk bed, walk to bathroom with walker. Nystagmus blind.

They ruled out the cancer not cancer, meningitis, lime, MS, everything.
Maybe it’s EA2 or SCA6 b”but testing is expensive and not always conclusive”

Ok wellllllll I have 3 kids waiting I need to go home. Sure but you have to do 3 days of aiV steroids. Follow up. You’re not going to die we have concluded, not right now anyway.

Sooooooo … a handful of Neurologists later I now know I need to get to Mayo.

We are transferring job and location over summer. Stressssful.

Ok thanks for listening. My words are getting too broken and I’m annoying myself.
My handwriting is terrible!

Louise

This!! Expresses me to a T!

I have learned so much on my own but find it hard to speak well enough to best get it all out or explain my own theories. Then I’m just SO tired I have to pace myself. You have to pace yourself I know.

I knew I had to come here and speak to you and all of the members as my next step frankly. It’s my. It’s my missing piece.

My neighbor is about 55, he has stage 4. I just saw him walk by looking thin but well with his dog.
This really messes with my head. I used to walk with my dog or stroller twice a day for years and years. I do not want to go out and walk now. Spent a year trying I thought making my muscles stronger could fix it. I was just dragging and mis stepping with nice legs after a while. And the headaches to follow from over stimulation UGH.
Anyway, proud of my neighbor. I think he only has months.

I should try to do something now :wink:

I’m on the East Coast now of the US but my entire family is from the UK. Essex, Weymouth & Dorset. I’d like you to pass me a Flake and a Crunchie please! xo

Hi @Louise78-
My father had symptoms- we were always told that he had a stroke. (my parents have been divorced since I was 12) My genetics doctor did her homework when I had googled my symptoms and approached her with SCA. Together we got my father to reluctantly sign a medical release, this way we knew what type of Ataxia we were looking for. My twin sister has the same symptoms. She also got tested. We have 2 other older sisters who are not symptomatic. We are awaiting on an appointment @ Mass General in October. Some days are better than others :slight_smile: Erin

Banana, I was in the same boat until I just gave it a go a few days ago. We are new together xo

Ok I loveeeee that you have had it since ‘85!

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Erin, good morning!

You AND your twin have this? If I’m correct that sounds like a doctor or researchers dream case!
I hope between feeling unwell and just managing life you can really let it set in how special you two are and try to find time if possible to reach out to Mayo or Hopkins to see if you and twin could receive aid and the best care for perhaps them learning from you two.

I totally understand about your father and that uncertainty of symptoms stroke, etc. I have that curiosity myself. But mine to test are deceased now. And I wonder if having a diagnosis effects you as of now or more for knowledge and family history.

Take Care!

Erin I just re read to see about your appt in October.

Before you know it it will be a month away! Best of luck!

Hi @Louise78-
Yes my sister and I against the world!!! :slight_smile: The neurologist we see here is useless. My PCP is more help than she is. I am glad that I did not know of this family curse when I was younger, I am preparing my self to tell my 2 daughters. :frowning: not looking forward to that. For now just continuing to work everyday, make dinner and crash!

Consistency is everything. Keep up the good fight for your girls.

We are freaking Warrior Moms I swear, so much unsaid we carry on our shoulders.

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