What ever happened to Living With Ataxia?

[neta]

Perhaps it's my imagination, but I no longer get mail or anything from LWA. What does this mean? I checked "spam" and "all mail". Nothing. Was I cut off or did they cease to operate?? What happened to the people on their site who had ataxia? I think they were Americans?

[Dressy6]

Hello neta! I wondered the same thing.

I posted on there the other day asking if there was a problem with the site and apparently there is some website maintenance going on or something?

It's the newsfeed that I notice most as not working properly. We can't see when people have been posting. Someone replied to the discussion I posted and I didn't notice for a couple of days because it didn't come up anywhere!!

Hopefully it will be fixed soon

[wobblybee in reply to Dressy6]

It was me who answered😊

Yes, it's still functioning. Due to the volume of traffic on Ben's Friends, and the probability that more groups will be added, the format will have to be adjusted accordingly.

Generally speaking, the number of emails we receive from LWA is in direct response to the number of people being active on the site. No-one posting equals no emails.

The same thing happens here on HealthUnlocked. Occasionally there's a flurry of activity but in all honesty we have to agree that the site isn't constantly busy. This is not criticism just a fact.😊

There are other online support groups, I'm a member of one on Facebook, and of course we have AtaxiaUK on Facebook.

So, if no- one participates, well ...... And, not everyone is interested in replying to every post, therefore everything can temporarily grind to a halt😊

But, it has to be remembered, sometimes the site is only active when someone wants an answer to a problem. Joining a local Ataxia Support Group can be beneficial too, often a friendly chat by phone can lift a weight off your mind or take away the feeling of coping alone😊

What I notice most is the general shortage of welcome posts given to newcomers on LWA. We've all been there and it's often hard to summon up the courage to join a group and bear your soul.

It's peer support, we need each other because we're all in the same boat😊xBeryl

[neta in reply to wobblybee]

thanks, wobblebee, for your response. Nevertheless I am still confused. It's been many months. When will this clear up?

[wobblybee in reply to neta]

That's the only information available at the moment Neta😊 There have been spammers trying to gain access to groups, I've posted a message referring to this.

As the winter draws on (depending where you are of course😊) and people are generally more housebound, posts might be more frequent😊

Also, it depends largely on whether people need emotional support and feel that they get it from the site.

Have a look at the other Ben's Friends groups, just to gauge what their activity levels are like 😊xB

[neta]

I mean Beryl of course or Wobblybee. Best wishes N

[wobblybee in reply to neta]

Either Neta, best wishes😊xB

[neta]

Gotcha and thanks...xo N

[tedjohnson]

Hi beryl

It's always great to hear your various comments and views. Health u l is very good and one gets quite a lot of comfort from it. I personally have had ataxia for over 6 years now and very fortunately have a wonderful helper/ wife!!!

I suppose the main worry is how fast the 'progressive ' part is with ataxia. I keep fairly cheerful by thinking of all those people in the world who are very much worse off than I am

One other point Beryl, do you hear anything from John who always hade something funny to write about. I think his name was RN-----

Kind regards. Ted

[wobblybee in reply to tedjohnson]

Hi Ted😊

It has been quite a while since John posted here. I looked forward to seeing his observations😊

He lives not to far from me but I don't know exactly where. I'm sure he would have kept us amused had he come to our local support group😊

Privacy issues being what they are, it probably wouldn't be possible to get in touch with him other than via this site.

Like you Ted I'm so glad to say I have a lot of support at home, my husband often goes beyond the call😊 Though it is fair to say it did take a while for this to come about, Ataxia being what it is and the long drawn out journey to diagnosis.

I actually cannot remember being without some symptom or other😏 My condition has steadily become more 'difficult' for what seems a very long time. I was searching for an appropriate 'not too depressing' description Ted😊 Generally speaking, the exact course must be almost impossible to predict, even for a Neurologist😏

Neurologists have research information at their fingertips, family histories to guide them and still diagnosis can be elusive. The last I heard, there were almost a hundred types of SCA identified, it's mind boggling.

For years I thought I was simply Idiopathic, and that was that. But now, I know that the condition is genetic. It's autosomal recessive, both my parents carried a mutant gene. They themselves were carriers and free of symptoms. But my brother and I had a 1 in 4 chance of inheriting Cerebellar Ataxia, I pleased to say he's ok😊

Not having a family history relating to Ataxia does make it hard to accept the findings are genetic. But, DNA confirmed a link so..... The thing is, now I find myself watching my son and daughter for suspicious symptoms😏 Neither one of them want to be tested, it's individual choice and I can't say I blame them. My next appointment with a Neurologist is in January, and I'm intrigued to find out if there's more information.

Best regards😊xBeryl

[neta in reply to wobblybee]

Dear Beryl.

You're response to Ted,was very candid and admirable. It was a pleasure to read. Be well always. Neta

[february]

Dear Neta, You are not alone in this, as I've wondered the same thing! I don't receive any discussions anymore, just when someone new joins the site. I welcome them , as I'm a "greeter". People are still posting discussions, but you have to go to it (discussions) to find something, and then respond if you'd like to. Thanks for the helpful info., Beryl, as I was wondering if the site dropped off the face of the earth...,ha! ;o)

[neta in reply to february]

Thanks for your response, "February". I heard from Beryl, who provides a very measured response and explains what the problem is, who but the other voices seem to have dropped off the map. Nevertheless, I will check out the site, as you say...

[wobblybee in reply to neta]

I've left messages for 'the higher ups' relating to what's been mentioned. So far no response, I don't know what to say....

When I hear anything, I'll post it here😊xBeryl

[wobblybee]

Hi All😊

The message back was - changes in format still taking place......

We're all used to being patient, aren't we😊xB

[Dressy6]

Hi Beryl, thank you for reporting back and keeping us informed