“Cockle Doodle Doo” and Good Morning to all Ataxians 09 Jan 2017 Good Morning Folks 

[Bert4of6]

Now for those of us who are struggling a bit, myself included today (back and stomach in particular plus my voice which has decided to do a bit of Yodeling practice), so this post is to be about motivation and exercise… so come on stop moaning and listen up.

I’ve just had a little chat with “isabelalfaiate” Isabela to her pals which will include you providing you cheer up. Her last post (not the one played on a Bugle) let everyone know her own progress – it’s worth a re-read guys.

I’m finding using this site to be extremely therapeutic for me – I’ve set myself a personal target of Posting Daily and trying to answer all responses – so now I’m motivated and my hands and mind are getting some great exercise and I’m smiling again without cracking my face… yippee. :-)

I feel rejuvenated… like a big daft kid.

I wonder what my ex colleagues would think of my antics, yeah, I believe they would conclude that “he’s gone mad, quite mad”. They would probably, to a degree, be right.

Speaking for myself and my continuing journey through the mysterious, strange, scary and oft frustrating world of Neurological dysfunction, I haven’t travelled this shitty road without picking up some Psychological Damage.

Of course some medics are, perhaps, a little too quick to pick up on this and decide that all your problems are pycho in origin – my GPs have, for the past 40years, been telling me that your “Depressed“ and that is causing, inevitably, your “Anxiety” which explains why you keep bumping into doors jambs or getting dizzy etc. etc.…

Preconception by some, based on their ignorance of the varying individual symptom manifestations and presentation of different neurological problems and, their understanding of the related complexities involved... phew - well I can understand what I'm trying to say. I'll continue this another day... I've given myself a sore head Lol.

Enough of this I say, it’s too depressing… onward before the morning post becomes the evening post. Joke :-).

I’ll pick up on my journey another day… cos it’s moan & groan time – “The

Daily Joke”

Dealing with Eye Problems:

Patient:

Doctor, I’m terribly worried!

Neuro Ophthalmologist:

Mmm and why is that?

Patient:

I keep seeing pink striped crocodiles every time I try to get to sleep or close my eyes. It’s causing me great distress, I’m scared, I feel depressed, I’m always tired because I can’t sleep oh and I keep falling over – help me please, please it's all driving me insane.

Neuro Ophthalmologist:

Ok, calm yourself now, (pass the buck time). Have you seen the Neuropsychiatrist yet?

Patient:

No Doctor- only the pink striped crocodiles!... Boom Boom :-).

I like that one so I’m giving it another 

See Ya & Take Care All… Cubby.

P.S. Don’t forget to have a look at Isabela’s previous post

[flawlesssFayx]

Hello, I have Friedrech's Ataxia, [diagnosed 1980, now confirmed by a blood test] i never had any eye problems until I reached about 45, theni it was just dazzling by bright lights in the shops. i have recently 'retires' with my hubby,leaving after 29 year] our family home [I have 2 healthy daughters aged 25 & 27] in Maidenhead, Berkshire for a bungalow in Newton le Willows, Merseyside, near our youngest daughter. my eyesight now is tunnel vision and blurred both close and far off. I feel like I am loosing all confidence. Can Fa. actually make you blind?

[Bert4of6 in reply to flawlesssFayx]

Hello Fay

I'm sorry Fay, but I don't know how Friedrech's Ataxia (FA) will develop or progress for you - I'm not sure if anyone can say with any level of certainty.

Loosing your confidence is understandable but please try and fight that... I know that's easy said but, I sincerely believe, it's important that you or anyone keep fighting off any psychological side effects caused by the constant, unrelenting drain on the individual's resolve or ability to fight back against their illness.

I'm a patient too Fay, not a Doctor!!

Please understand that my comments on here are my own personal views and should be taken lightly, with a bit of humour and a large dose of salt or Brandy :-).

I am constantly at war with my own thoughts... and as I said in my post, you could view me as being a little crazy. That doesn't matter to me: being a tad eccentric helps me through the day so I don't care what others think :-).

Keep fighting Fay and ask your care package medics to provide you some more answers regarding what's happening with your sight. They will provide more information, if they can. You should also ask if there is any counselling available (and not just sedation) for your issues with confidence.

Take care Fay and keep fighting... Cubby.

[flawlesssFayx in reply to Bert4of6]

Thanks Cubby, for answering.It must've taken a while and beleive me I have been a fighter all my life. Haimng FA as made me tough.

[HarryB Administrator in reply to flawlesssFayx]

Hi flawlessfayx

Freidreich's ataxia can cause vision loss. You must speak to your GP/neurologist about this and ask to be referred to a neuro-ophthalmologist. Your vision needs to be properly assessed in order that the most appropriate treatment for you can be advised.

Best wishes

Harriet

[wibblywobbly in reply to flawlesssFayx]

hi Flawless Fay, I don't have FA, but have a genetic Idiopathic SCA. But I was suffering from tunnel vision for a few years. I couldn't even see someone next to me! The loss of my peripheral vision was confirmed with a special test and six months later it was nearly all returned 😊

All I did was eye exercises about twice a day every day. No doctor or optician told me to do them ! I found the exercises on Nigel Heaths site ataxiafightback. They were very difficult at the beginning but they did get easier. Now I only do them from time to time, but if the tunnel vision returns then be assured I will restart them everyday. I think the muscles around the eyes had all contracted up - just like the rest of me lol. So they needed to be moved and stretched.

I hope this helps you. And good luck. But do seek specialist help too. But they exercises can't do any harm

Alison xx

[flawlesssFayx in reply to wibblywobbly]

oh!! ty so much. know what mean about muscles contracting. a favourite saying of mine 'if you dn't use it, you'll lose it.' I shall take a look and rry exercises

[goodenough]

Hi Cubby. Look forward to your posts. They really lift me. Having a bad time with dizziness. Can barely walk and eyesight poor. Seeing optometrist again end of month and hopefully he can help with eyes. Do people who have a problem see neuro optometrist. I think the guy I see is just a run of the mill optometrist!

In touch with ataxia nurses at Sheffield and they offer lots of advice.m

Where do you live? I am in Spalding, Lincolnshire.

[Bert4of6 in reply to goodenough]

Hi goodenough... sorry to hear that you're having it bad at present. Not sure about the eye thing as I don't have any difficulty in that area. Perhaps someone else, maybe HarryB, can provide you with an answer.

I'm very new to all this Ataxia stuff and still finding my feet and doing my homework to learn as much as I can so that I can, hopefully, better understand these problems that I have and hopefully best some of at least.

I'm in Scotland and so it's a bit of a journey to get to the nearest Ataxia Center but, if I'm really stuck or have a question I can't find the answer for then I might call the one in Newcastle which would be the nearest center for me.

Anyway... I hope you feel a bit better soon

Take Care and keep fighting... Cubby.

[simon111 in reply to Bert4of6]

Hi Cubby

Just a message to see if you are OK. I have missed your posts and the fact that you started off so positive

I do hope everything is good with you

[isabelalfaiate]

Hi CubbySnr,

Lovely post again, keep it up. Just a little joke, my son-in-law says I missed a great football carreer, as I can drible like the best..... lol (joking about the way I walk).

take care, keep smiling.

Isabel