from the guinea pig's desk

[Guest guest]

Saw the doctor today, very pleased with the buscopan clearing up a number

of symptoms. Extending my script for another three months.

Having bloodwork done on Monday. If my iron levels are still

excessive, or RBC high he will consider ordering a phlebotomy.

Still feels unreal to have him refer to Shy-Drager as definite, but I

need to hear it. This is the first time I actually heard his

voice, I've always lip-read him, never heard him (not in memory),

completely different, and I could 'hear' him even when he turned

away. I'm also able to idetify far-away sound (no longer a noise

blur).

My oldest daughter Shari is coming over tomorrow, haven't seen her for

almost a year. She's still plagued by neurological problems.

At least she's able to work again. I often worry that all of us

having neurological problems is linked, and with her I know it can't be

hereditary (I'm not her biological mother). I've heard molds and

toxins can trigger neurological problems. Also in the J.

Fox special they mentioned the set of Family Ties seemed to produce a

nest of Parkinsons, and other such clusters have also been

identified. Does anyone have specific literature or links for

this.

Thanks to the vertigo being at bay I can walk much better, I've extended

my walks to about eight blocks. I've also been able to do exercises

standing up (it's been months). According to the doctor, if I'm not

experiencing any negative effects it is completely safe to take the

buscopan for an extended period of time. It may not be a standard

treatment, but I'm terribly pleased with how well it works for me.

Quality of life is everything.

He did not think ablation was the way to go for the facio/cranial

pain. He will try to help me get the Sage Mouth Moisturizer, and

the Citrucel - which has still not been possible. My mother in law

could not find any in Toronto either. The Glaxxo Welcome people

were not helpful at all. My doctor will call them and see if he can

get me some (maybe they just don't want to deal with the great

unwashed). He signed a request for a liguid food allowance, but

we'll see if that actually cmes through - would be nice.

Aside from that I've been sitting wrapped in blankets on a summer's day -

limbs blue and stiff. Ah well, one thing at a time. Optimistic

maybe, but seeing any improvement is possible, gives me the incentive to

beat this dragon, no matter how bad the odds.

aletta mes

vancouver, bc

Canada

web:

http://aletta.0catch.com