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Ataxia Support Network

I love Ataxia


#11

Did you ever try the magnets


#12

Yes, Bobby, I did! I find the extra stimulation of the soles of my feet very helpful! The better you feel where you are in space, the better your balance and coördination. Not sure however, whether this is due to the metal balls sentisising your feet with every step or due to them being magnetic… :wink:


#13

Believe me it’s the magnets getting together with your magnetic field in your body that’s doing it. That’s how the magnets work


#14

I have ataxia due to late onset Niemann Pick C1 disease so it is terminal!!! Life itself is a terminal disease…,ha! Yes, of course I’m glad I don’t have cancer, as my first husband died of cholangiocarcinoma (cancer) and what an horrendous disease, as, yes it could be SO much worse! I’m truly blessed and one of the most positive people you’d ever meet, I’m just sayin’. Merely answering Chaz51’s question. I love having ataxia…,NOT! My best to you…,;o)


#15

I think we all need to think about the positive. The things we can do, not the things we find difficult. I am not a priest or a do gooder, I am a realist. I have a rare form of Ataxia and have all and more of the symptoms but I WILL NOT LET IT TAKE OVER. If you find relaxing hard then do some meditation. If you get low due to the time of year(perfectly normal in all humans the circadian rhythm I think its called). I have a blue light for low mood and an exercise bike, I have never fallen off it yet!!! Perhaps you have an interest in Reading, arts and crafts, socialising,. The list is endless. We all have this awful disease, DO NOT LET IT RUIN your life. We have one life and lets make the most of it. FIGHT ATAXIA don’t let it win. Motivational talks are available on the box if you need them. Physiotherapists talk about your core strength what about our own mental strength. Peter Ashbourne England


#16

:slightly_smiling_face: The original theme of this particular discussion, a play on humour which personally made me smile, sadly seems to be losing its way :smirk: Where would we be without trying to make light of the situation :thinking: I would go so far as as to consider whether humour is what gets most of us by :blush: xB


#17

You said it exactly BP!!! Laughter IS the best medicine.


#18

I loved this thread. Let’s face it, this disease sucks. I feel like I have to be positive around people so often, that it is nice to be able to be real here. I actually am a fairly positive person, but I am tired of feeling like I have to be.


#19

:slightly_smiling_face: I love that I’m not alone in needing occasional ‘silliness’. I’m all too aware of the stark facts, and the advice passed down from professionals. There’s plenty of opportunity to be serious on the main forum, personally I hope this thread continues :blush: xB


#20

I loved having to crawl on my hands and knees over ice the other day to get to my car so I could go to the gym and work out.


#21

Couldn’t agree more with what you said Beryl, as well as Linda4! Although everyone has a right to their opinion, I find it healthy to be able to vent once in a while!


#22

:joy: That was determination :wink: xB


#23

While I completely agree that venting is very important or that you might internalize and that could lead to some VERY bad things, it is just as important to vent by laughter for the same reason. Remember, it is what it is. No one here wants this thing or asked for it. Please know that this thread was started tongue-in-cheek. If you need to vent with a negative feeling [I’m not saying anything bad here] then perhaps you should start a thread for that also. :grinning:


#24

My favorite time of the year is here - ice and snow! :hot_face:


#25

I love it when people always assume I’m some kind of drunk, drug addict, or just an a-hole because I’m “young” (I’m 40) and they don’t think I need disabled parking or help standing or walking.

It’s especially hilarious since I am a tee totaler.


#26

I’ve actually fallen over while on my hands and knees. It’d be depressing if it wasn’t so ludicrously funny :rofl:


#27

I love how I have someone to shop for me now…I travel without ever leaving home sense my voice is changing I sound like I am from different countries how( sweet is that). I must say with Ataxia it is never going to be a full day.


#28

DThe vertigo I’ve had for 3 months now is actually a blessing. I love feeling like I’m on a rollercoster. So much fun! I feel like a child. And I don’t even have to spend the money. I only have to mention the word “vertigo” to people who watch me with my “funniness” to get some sympathy (oh you poor thing oh yes vertigo is horrible I’ve had that), vertigo is more common and people can relate. I won’t even try to explain the ataxia.


#29

I’m also “blessed” for being half French. If I have any symptoms in the speech (I don’t even want to know) I hide it with the (slight, if I may say so myself!) accent. Imagine me going to see a speech therapist “Doc can you do something for this little accent that I have?”


#30

Yesterday, at my local support group. Several people mentioned how difficult it was to moderate the volume of speech when speaking. Most of us were told by family, that either speech was low, or at almost a shouting pitch. The discussion was helpful to a member’s wife who was present, she hadn’t realised it was actually challenging to her husband, and it helped to restore harmony between them :slightly_smiling_face: xB