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Ataxia Support Network

Email reminders


#1

I really appreciate receiving email when I havent visited for a while. thank you


#2

Hi Patsy. How have you been doing lately? Do you get back pain? I have started getting it and it’s annoying. I don’t see the neurologist until end of July. I think getting the official diagnosis would be beneficial somehow. But maybe not. Official diagnosis could mean future trouble with insurance companies. Not Medicare though at least. Did you do something for Memorial Day. I had the opportunity to go to a potluck at a lovely farm. It was so peaceful. Wishing you lots of good days, Emily


#3

Hi there, Patsy! One of the things that we can’t do right now is broadcast to an entire community at once. We used to do that regularly on the old platform, and we are working on a way of doing that here too. But so far, the our tekkies haven’t cracked the code.

What you can do, though, is look for old, interesting threads and add to them. When you do that, everybody else that has participated in the discussion gets an email about your comment. That usually breathes a bit of life into the old community!

Give it a try! You may be surprised who you hear from!

Seenie


#4

thanks that’s very helpful


#5

ModSupport: I recently joined. How do I get to that old platform you talked about?thanks.


#6

Hello Emily, lovely to hear from you, No I dont get pain in my back thankfully. Most of my pain is in muscles but is relieved as soon as I sit down.
Tempting to sit isnt it? LOL but I am determined not to let my muscles waste away if I can help it. I really dont know if they will waste anyway.
I know what you mean by wanting official diagnosis but I have stopped worrying about that now.
We dont have memorial day in UK only remembrance day in November. I’m afraid I dont actually know what memorial day represents.
Yes, peaceful is good and I endeavour to find those sort of places to visit. I love to visit formal gardens and stately homes but can only manage the ground floor LOL. Are you on FB? There’s a video of me working with personal trainer at the gym but I dont know how to copy it on here,


#7

Hi Linda, it isn’t around anymore since we switched to our current website!


#8

Memorial Day is in remembrance of all the members of the US armed forces
who died in active service. So it’s probably similar to Remembrance Day.
Then we have Veteran’s Day in November which honors all US veterans who
ever served. You’re not supposed to say “Happy Memorial Day,” like my
neighbor did…but not to be picky.

How do you deal with all the confusion surrounding this exasperating
disease since there are so many different versions of it–everyone being
different? I know if I start feeling or experiencing a symptom I’ve read
about, like blurry vision or back pain, or fatigue or weakness, I think
"oh, there it goes, I’m getting worse." Or if I have a pretty good day I’ll
wonder what’s up; do I really have SCA or is this just caused by aging?"
But then I’ll remember my older brother whose gait shocked me, plus I’ll
walk and be very wobbly. And then get very fatigued suddenly. Or I’ll move
very slowly pushing the grocery cart or eating dinner. It should just be
labeled “Confusion Disease.”

One of the worse things is wondering if your mate will continue to love and
care for you. In my brother’s case: No. His wife finally had enough of his
behavior and she is suing for divorce. Granted he is very trying with his
demands and this will be his third divorce. I am married to a saint but I’m
still conscious of the risk of being too much of a burden. I need to just
relax and do the best I can.

When I was younger I loved to dance. Sometimes I wonder if that has helped
me not to fall.

Well I’m off to get dressed and then water my flowers. Have a really good
day if you can.

Emily…a fellow sufferer who is trying to grab onto everything beautiful
and kind around me.


#9

I am on Fb but I can’t put my name on here. I don’t like Fb anymore so I am very rarely on it. I put words to block on my email like “donate, Voldomort—our president, etc.” Therefore, I hardly get email anymore.


#10

You [and anybody on here] could join my FB group … you dont have to join in Colchester & Ipswich Support Group - Ataxia UK


#11

You can’t. We packed as much data up as we could and moved it the livingwithataxia.org domain to a new service provider.

We live here now, and we’re still in the process of painting and papering to make it our own.

Is there something specific that you’d like help with?

Seenie from ModSupport


#12

Nothing stopping you from sending a private message to your besties on this community! Click on their avatar, and you will see a mini-profile and a blue “Message” box:

When you click on that blue Message box, you can send a private (emailed) message to that person. You know it’s private, because you will see a grey envelope icon:


#13

Nothing stopping you from sending a private message to a bestie on this community to let them know how to contact you! Click on their avatar, and you will see a mini-profile and a blue “Message” box:

When you click on that blue Message box, you can send a private (emailed) message to that person. You know it’s private, because you will see a grey envelope icon.

The messaging happens without your having to leave the page you’re on, which is great, but just make sure you have clicked the blue message box. If you hit “Reply”, you’ll be making a public post.


#14

no, just more info on Ataxia…just looking for information. I think this site is great! It’s nice to be able to “talk” to people who understand…so great job with making this site!


#15

Lin-da, have you tried our search feature? Using the magnifying glass to the left of your avatar, top right, you may come across interesting threads. If you post to any of those threads, every poster there will get an email notification of your comment. That’s a great way to get a conversation rolling again.


#16

Yes, I do get very confused and am always trying to assess myself. I have come to the conclusion that I can do things that are done at speed and not actually thinking about how my limbs or digits will react. Even writing I can get it flowing if I dont think about being careful. I started typing at 14 and will be 75 in November so that is second nature to me. I can just about still crochet but bit shaky. My husband is also a virtual saint although of course having a man’s brain is not all things logical ha! bless him. Logistics of course is the name of the game and best kept in routine.
I dont know what things are age related or caused by shrinkage of cerebellum, I was told mine was probably from birth so undeveloped rather than shrunk… I was a premature baby and in 1942 that was not dealt with as it is today. My core and limbs need strength and I am working on that by weekly visit to the gym. They videod me last week and it has had over 7500 views!
It’s on FB and the AnyTime Fitness website.
I have a rock [alpine] garden which doesnt take too much looking after but gives me a great deal of pleasure. x


#17