Sunday, August 24, 2008

One more for the list

Over the years I have heard of some very odd and some very bizarre "cures" for multiple sclerosis.
Here's a new one for the list.

Zest!

Yup, the soap that gets you Zestfully Clean is the secret. Who knew?

Here's the story. My good friend works at a local health food store. I myself used to work with her there. (In my previous life). I think we have heard everything from the plausible to the absurd,even with some of the legitimate products we sold, but just this weekend a customer came in and told her his secret. She couldn't wait to call and tell me. I mean, my gawd, forget the doctors, IV's, meds, needles and PT...there's ZEST!


Apparently, this gentleman, has suffered from MS for many years, but alas...no more. He places a bar of Zest soap at the foot of his bed, under the bed linens, and that, my friends, has taken away all of his pain and spastisity.


I must admit, this call could not have come at a better time. It was Saturday, and for me not a good MS day. I had been lying about all day with the BubbyHubby eating Lortabs (plural) and watching the Olympics in Beijing. I had just experienced an event that brought about an extreme event of my favorite neurological symptom. The Russian women were performing the routine that won them the gold medal in synchronized swimming, and I reacted with an agonizing attack of Emotional Incontinence. I was laughing so long and hard that it really really hurt, and that of course was enough to keep me going long after the medal ceremony.


Then the phone rang with my friend, dying to tell me (she couldn't even feign a straight face) about Zest.
"You've got to be kidding me", I spit into the phone .....
"No, I swear, he was dead serious...google it or something!"

Well, I did, and the Google Gods did not respond. Nothing, Nada, zip!
So here for all future Googlers to come...the Zest cure for multiple sclerosis! You saw it first here on Bubbies Blog!

Guess that leprechaun lied when he told me about Irish Spring.

Wednesday, August 13, 2008

4 WHAT ???




That's what I said.


I had my neuro appointment last week. It went well considering. I have no new lesions despite refusing disease modifying drugs. My doc again pushed his vision for me to use Tysabri, but more gently this time. (most likely because of lack of evidence of progression on my films)


What are we considering?


As I waited...and waited, for the doc to enter exam room 3, I began reading a free booklet called Living With MS. Just before I was greeted by Neuro-Man, I was reading a passage about drugs for symptoms of MS fatigue and symptoms, especially brought about by heat. This of course caught my eye because I live in South Florida. Heat is one of my major obstacles, and the drug I used previously for fatigue was not tolerated well and had a new FDA warning on it. The drug that was being discussed was Aminopyridine or 4-AP.


I had never heard of it. That surprised me considering I thought I had voraciously read everything about MS in the first 2 years of my diagnosis, and have been practically OCD about checking all that Google reader has alerted me to.


So, after exchanging small talk about nothing new in my head, cervical spine or thoracic, and describing my symptoms as SOS, I asked about this 4-Whatever, that I had the little book dog-eared to.

"Oh.." he said, "I have a (note the singular) patient on that and she does well with it. Want to try it?", as he wrote on his prescription pad.
"How is it different than Provigil, what is it and how does it work?"
"I don't know."

HUH?

As a rule I like when doctors admit that they are not the all knowing all seeing deities that they often portray, but this was unsettling.
"You need to get it from a compounding pharmacy." was all he said as he handed me the script.

It kinda reminded me of a time (decades ago), when someone (not in a white coat and usually at a concert) said, "here try this."
"What is it? What does it do?"
"I got it from so-and-so, she really digs it!"
"cool!"

I came home and excitedly Googled this new little pill.
I found :


4-aminopyridine (also known as 4-AP and Fampridine) is a drug that blocks the potassium channels in neurons. This effectively improves the transmission of nerve impulses down damaged axons. It does not replace damaged myelin but users of 4-aminopyridine report dramatic improvement in a number of symptoms especially paraesthesia. It should be born in mind that this is an experimental drug and the side-effects are uncertain. Dosages should be carefully regulated as potassium is a chemical that is used extensively in other parts of the body including heart functions.

Agriculturally, 4-AP is used as an extremely effective bird poison sold under the brand name Avitrol. It is highly toxic to all mammals including humans if dosages are exceeded, and, as an experimental drug, recommended dose data is unavailable.

A slow release formulation of 4-aminopyridine is supplied by the Irish drug company, Elan Corporation, and is currently being tested by Acorda in two phase II trials in the US. It is currently awaiting authorisation by the US Federal Drug Agency (FDA).


I also found that Lisa, at Brass and Ivory had recently written about it and had many resources listed. (as usual, Great Job Lisa! )

So...what does the Bubbie make of all this? Hmmm, a bird poison? Not FDA approved BUT I can get it from a compounding pharmacist? How much do you take, and when? What's the difference between what I can get from the druggist and what is in clinical trials and not yet approved?
Potassium? Isn't that essential to important things, like...my HEART? Side effects? Will birds treat me like Tippi Hedren? ( Was that her in THE BIRDS?...MS brain fog)

Way too much to think about now. I'm going on another trip to see my kids next week. I'll return to my investigation next month.

Meanwhile, feel free to comment on whatever it is you know on the subject, as I am too confused to ponder and too old to say, "Cool! OK!"




Sunday, August 10, 2008

more words...








It's been 7 months since I began painting again.

I had to look back and find the WET PAINT post to see when it actually began. The truth is it actually began with the well sown seeds of caring friends who were obviously tired of hearing me bemoan what I used to be and do, by reminding me that I still am who I've always been. They could see that what I had closed off from myself, bottled up and put on a high shelf, was stifling me. It was a void that cried to be filled, and I had the power to allow it all along. I certainly have the time.
I have to say that I don't believe it's a big co-inky-dink that I have been so asymptomatic through this time. I have been off all DMA's since last December. I use Lyrica and and pain meds as needed. I have had flares of symptoms here and there, possibly from the heat or overexertion, but they didn't get me down long. My MRI's have shown no new confetti. I have been more physically active. I have traveled. I feel like I have regained my sense of self. My attitudes are brighter. My attentions have shifted from the unwanted to the desired.



My palettes are wet, multiple easels are in use, my flowers are blooming and I have been very busy. When the damn of self expression gives way the torrent can be jarring and even unfamiliar.


Recently I've been writing more words. I posted one once before that surprised me as well. I don't know if they qualify as poems or lyrics, but I do recognize them as being self portraits in a sense. More so than a picture of pretty flowers or fruit in a basket. I must be holding back. I think it's time to REALLY let some paint FLY.

I have no title for this : ( probably out of fear of really revealing the entity you know as Bubbie...LOL)




I can never really know you
But I recognize your soul
The bridge between our worlds is damaged
treacherous
dangerous to cross.
I lose myself on my way to you
A sacrifice unholy.
A prize that leaves me lacking, a meal that weakens
and a discordant song to dance alone.
Both the fool on my shore or your bank
I gaze across the expanse
I grieve to know you built it unknowingly
with all the rotting planks of lies
and words sharpened with razors from your desperate wrist.

Saturday, August 2, 2008

August Blooms

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I needed some re-potting supplies and just had to go to my favorite orchid greenhouse. I knew before I went that I wasn't going to be able to leave without a new baby. I never can.

The white one is the one that HAD to come home with me. It's scent is so delicate and beautiful.

The one pictured in the center was my gift to myself last year. It's only the second time it's bloomed for me, and has two more clusters of buds waiting to follow.

I seem to be amassing quite a collection. It only seems to be really evident just how many I have when it's necessary to take them down if a tropical storm threatens to blow them and us away.

So far so good this year. We've been very fortunate.

Geeee...I wonder if I need to go back and get some more plant food?

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