A Positively Good Afternoon to all Ataxians .... - Ataxia UK

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A Positively Good Afternoon to all Ataxians ....

Bert4of6 profile image
18 Replies

Afternoon to all ... I woke up this morning, shook off my depressed negativity and decided to switch in to positive mode - now let's check my Email...

The first thing I want to say is that this forum is proving to be good for me. When I check my Email now, I'm hoping to see something from this site, which is a positive thing and demonstrates that playing an active part in communicating with others, in similar circumstances to my own, is beneficial to my own state of mind (so not quite a loony after all) Lol.

One thing though, I am a little uncomfortable conversing with folk I can't see or know what they look like so I'm sticking a pic up with my profile so everyone can see who I am... I hope that some others on the site might do the same - don't be shy now lol :-)

I think it would cheer us up no end... there's nothing wrong with having a quiet giggle or an out and out hee haw but, regardless, I believe it would help engender a sense of togetherness and make conversations a bit more meaningful.

Anyway, that's just my current upbeat mood's view on the displaying a personal photie here. I wish I could add some emoticons to my dialog, again, it might brighten things up when we talk with one another.

Anyway... I hope some of you are up for putting a mug shot up as I definitely am and I'm going to change it regularly. All comments, good or bad are invited so let rip if you want to, if it cheers you up then go for it :-)

Take care all... Cubby.

P.S. This started out as "A Positively Good MORNING to all Ataxians " but it's taken 4 hours to compose and type this out... lol, so I had to change the title.

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Bert4of6 profile image
Bert4of6
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18 Replies
wobblybee profile image
wobblybee

Hi Cubby 😊

Never fear, you are not alone 'in taking your time' 😉 I can spend hours thinking and posting (and correcting) 😉

I don't normally wear a red wig, it's my pic from chemo days. One day I'll get round to changing it🙂 You can actually view me on one of the Ataxia videos, it was done at an Ataxia Conference years ago🙂

It's good to pass the time of day🙂 And, nicer when you can see who answers🙂

I live near Newcastle, there are a handful of Ataxians in this area but not everyone goes online. I'm the contact for Gateshead and used to arrange Support Group meetings. My own ill health, and then an elderly relatives needs halted this. But, I hope to be in contact with members soon🙂 And, I'm always available online, or the phone 🙂

Did you know that there's an Ataxia Conference soon in San Antonio? Not exactly on the doorstep but I'd like to go🙂 Details can be found on ataxia.org 🙂 I've been to AtaxiaUK Conferences and can recommend them, particularly to newly diagnosed Ataxians🙂 I went to one shortly after being diagnosed. It took some courage I can tell you, because I had never met anyone else with Ataxia. But no regrets 👍

My daughter has just arrived to tell me about the Diet and Fitness course she's enrolled on 🙄 Speak soon😊xB

Bert4of6 profile image
Bert4of6 in reply to wobblybee

Thanks for the reply Beryl... yeah, I was wondering about the hair colour - is the Swan Vesta look still in vogue? Now don't curse me and be mindful of your BP lol. Just a bit of levity Beryl, hope you don't mind.

When I go into Upbeat mode I tend to treat everything as a laugh and a joke because if you can't have a laugh (a wee titter or even a major hee-haw) now and then) it really would make this a totally cursed existence. Mind you, I think the wife & family dread the upbeat mode as they, invariably, become the targets of my mirth.

Hey that's another idea... the daily Joke. I'll have to have a wee think about that.

Take care... Cubby.

Bert4of6 profile image
Bert4of6

To everyone... I hope that my brand of humor or levity does not upset or offend anyone cos it's not meant to. I, like the rest of you, hate being what I currently am - disabled. I'm trapped in my own home but I'm determined not to be trapped within my own mind because, quite frankly, my mind is not always in a good place.

So folks, humor or levity is what keeps me from going completely bonkers but it can seem to others around me that perhaps, I'm quite mad, not quite the full shilling but who cares, I don't.

Take care all... Cubby.

rankin1st profile image
rankin1st

Hey cubby that is an awesome sence of positivity. My hubby struggles with typing and tiredness and it takes him hours to do things too. Have you thought about using Google to record your speech it listens Andy types for you. You just say ok Google send text message to blah and it opens it and types what you say so you don't have to key it in might be helpful.

Bert4of6 profile image
Bert4of6 in reply to rankin1st

Hi to you... thanks for the wee gee up, makes the effort worthwhile :-) Yes, I have been looking into the speech recognition software but with Microsoft's software.

It's early days but I can see the benefits for those of us who have problems getting their hands to work. My only problem is that if you mix my Scottish accent with a hoarse, broken speech pattern even I can't understand myself little less computer software with predominately American English understanding or interpretation??

Me being me though, I'll not only have it understanding but also talking like me lol.

Maybe I am mad eh?

Take care now... Cubby.

wobblybee profile image
wobblybee in reply to Bert4of6

I don't have speech recognition software but, at Christmas my daughter gave me 'Alexa' an Amazon echo dot. She's forever butting in🙄 Supposedly, only responding to specific question or commands 😳 xB

Bert4of6 profile image
Bert4of6 in reply to wobblybee

Hi Bee... yeah I've got Wee Alexa Dot too and her big sister Big Dot. :-)

But, alas, I have the same problem with them as with Speech Recognition and the Computer. My American Dot & Echo are simply not up to understanding the dulcet tones of a Fifer in full vernacular prose and don't forget the (Sean Connery)husky hoarsness.

Is Time The Cure?

Patient:

Doctor whenever I get up after a sleep, I feel very dizzy for half an hour, then I'm all right.

Doctor:

Then wait a half hour before getting up... next :-)

Take Care... Cubby.

P.S. so is Time the Cure... Naaa :-)

wobblybee profile image
wobblybee in reply to Bert4of6

😂xB

claire01 profile image
claire01

Good on you been so positive,I myself do try to bring humour and feel good factor into my days.I have spent too many days depressed and mixed emotions with tears,I have recently had to give up work (which was soul destroying,was a health care assistant) feeling of guilt for my kids and husband,asking why me I am young only 38 but this is me,keep positvive and laughter (afterall the best medicine)

Bert4of6 profile image
Bert4of6 in reply to claire01

Hello Claire... keeping positive is probably the best medicine for all of us. Losing a job and with it, your sense of self-worth, independence, financial security and self-pride is not easy for anyone far less someone who is also trying to understand and cope with the problems of their ill-health.

I can also relate to your feelings of guilt regarding your partner. My wife's the same age as myself and so she is also beginning to feel all the age related aches and pains and I feel guilty that she has to continue to work for purely financial reasons and I'm sitting on my ass, idle at home. There is also the extra burden of looking out for me. It was only 12 months ago that I was asked to retire early due to ill health and that was very painful for me so being retired at an earlier age will be ... hey ho. Freekin Enough I say of this negative stuff.

Topical Joke for me:

Patient:

Doctor, I have a serious memory problem. I can't remember anything!

Doctor:

So, how long have you had this problem?

Patient:

What problem?

Heh heh, altogether now... MOAN :-)

Keep yer chin up Claire & Take Care

Cubby. :-)

goodenough profile image
goodenough

Hi Cubby. How do I get photo displayed? Goodenough

Bert4of6 profile image
Bert4of6 in reply to goodenough

Hi... Goodenough - is that your surname? Sorry, I'm a Nosey Pratt.

Now, How to post a photie of yourself...?

1/ Look up to the top of your screen (next to "HEALTH UNLOCKED") mouse click on the down arrow next to your moniker (Goodenough) and choose “Profile”.

2/ that will take you to your personal Home page:

Now, mouse click on the “Edit profile” button (over to the upper right of your screen)

3/ you will now see your edit profile screen:

Now – On the upper portion of your screen you should see an “Upload” button to the left of screen (the “Upload Image” centre screen Top can be ignored)

Mouse Click on the left “Upload” button

This opens a File Selection Dialog where you would navigate to the file location of your picture.

Select Your Picture file and then click “Save” that is if you’re happy with the picture.

4/ before you leave that screen/page – scroll down to the bottom of the page and click the “Save changes” button or cancel… whichever.

Good Luck and, hopefully, see you soon – Take care… Cubby.

P.S. any chance of a nickname or Christian name for ye? I know that I’m a cheeky sod, nosey pratt as well as being many other things in the past, present and hopefully long future .

AnnaP2016 profile image
AnnaP2016

Just changed the smiley profile icon to the picture taken last month. It definitely is nice seeing the faces! At least now we know that we come in all shapes, colours and sizes. Have a good day today! The sun is finally shining down here in Essex!

Bert4of6 profile image
Bert4of6 in reply to AnnaP2016

Yep Anna, we certainly all do come from different molds.

Yes, it is better to see who it is your conversing, or empathising with irrespective of what you look like.

Good on ya for taking up the photie challenge... and it's a lovely photo at that.

Take care... Cubby.

P.S. I'm already having a good day... so much so, I've tired myself out, time for a wee kip... Bye. :-)

isabelalfaiate profile image
isabelalfaiate

Dear Cubby,

I totally agree that you must keep a positive attitude and celebrate your successes however small, instead of thinking about things you may have failed. Like you I am always joking about myself and those around me. It does not matter how long it takes you to type and edit, looking at it in a positive way I would be greatfull that I have time to do it. Time is a luxuary I now have as I am no longer rushing to work. It is also good exercise for eye - hand co-ordination and fingers. If you do not use it you loose it, so keep it up. Here is just a thought to add to your positiveness. Getting up in the morning look forward to all the achievements you will experience that day (sort of count all your blessings). I do that and count all my achievements as the day progresses and list them again before I go to bed. I choose to ignore and not to dwell on anything I was unable to do, I try not to see problems but solutions. I will be looking for your posts.

Take care, Isabel

Bert4of6 profile image
Bert4of6 in reply to isabelalfaiate

Hi Isabela... I can honestly say that it is nice to SEE you. I'm glad that you took up the photo challenge... Lovely Picture .

You are absolutely ‘spot on’ advocating exercise. Your post, a couple months back, illustrates what can be achieved – good for you Grandma. :-)

However, I imagine that exercise and goal oriented motivation would be relative to an Ataxian’s individual and current symptom severity but even so, there is probably some measure of benefit to be had from exercise even if it is just exercising the mind. (Keep the Loony Depression at bay lol). :-)

Must get on to the daily post (motivation) so Isabela,

Take Care… Cubby. :-)

Iain_100 profile image
Iain_100

A Fifer. I might have guessed ;)

Seriously though, positivity really is the best medicine.

Bert4of6 profile image
Bert4of6

Positively Agreed Iain...

Here you, there's nothing wrang wi being a slightly deranged chappy fae the Kingdom (anyone for golf)? :-)

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