Saturday, January 30, 2010

Fine tuning the medications

I went to my neurologist on Thursday and discussed my "wearing off" and dystonia problems with him. He suggested I try a little Amantadine to smooth out the peaks and valleys in my levadopa response, and if that is well-tolerated after a week or two, I'm going to try a little Baclofen for the dystonia. Hopefully, if the Baclofen works, I can take it when I get up at 3:30 or 4:00 in the morning, and it will kick in before the dystonia starts. He cautioned me, though, that dystonia is very hard to treat and the Baclofen may or may not work.

So, I've been taking the Amantadine for a couple of days, and so far I just feel exhausted. I did about an hour of housework this morning and I feel like I just ran a marathon! I always have to give a medication adjustment some time to work, though. Sometimes it takes a few weeks for things to settle out.

It's amazing to think of all the drugs I'm taking in my daily "cocktail": Zelapar (selegiline), Stalevo (levadopa, carbidopa and entacapone), Requip XL (ropinerol), and now Amantadine, too. Then there's the Ambien for insomnia, and the Imitrex for the occasional migraine. Whew! And to think I used to complain about having to remember to take one pill every day!!

Sunday, January 24, 2010

Sand Castles

Sometimes I feel like I'm building sand castles, and Parkinson's is the ocean, crumbling my defenses. I keep having to move farther up the beach and build a new castle, knowing that the ocean will inevitably take that one, too.

I'm neglecting my relationships; I'm curling up within myself, hiding again. I suddenly realize that I'm waiting until I feel better! That's not a good idea. I need to open up again and participate.

Well, they say that knowing is half the battle, so....

Thursday, January 14, 2010

Chocolate Morning Glories and Raynaud's Syndrome

"Chocolate morning glories, chocolate morning glories". That's the phrase that kept running around in my head this morning; woke me up at 4:00 a.m. Why? I don't know. Yesterday, it was a name, "Mobely". I don't know anyone named "Mobely". Ever had a phrase from a song or an advertising jingle running through your head? Same thing, without music. I'm really having a hard time sleeping these days. I figured that if I got up and drew a picture of what I think chocolate morning glories might look like, it would stop ricocheting off the inside of my head. It worked; I'm cured!

Yesterday, I was diagnosed with yet another rare, incurable condition that nobody knows the cause of; Raynaud's Syndrome. It started suddenly this weekend; one finger that goes numb and cold, turns ghostly white, then blue, then red, then back to normal. The doctor says it's no big deal, just keep your hands warm. Oh, I also have carpal tunnel syndrome. The doctor's suggestion for that? Learn to crochet with your feet.

I'm working on it...

Tuesday, January 5, 2010

Not necessarily New Year's resolutions

I don't believe in New Year's resolutions. I think it's just setting yourself up for guilt and discouragement, and if you really feel that you need to lose weight or quit smoking and you haven't done it yet, New Year's isn't going to help you. Therefore, the following is NOT a New Year's resolution. It's just that this season of gift giving and gift getting made me realize that a shift in attitude is needed.

In this new year, I'm going to try to remember that every day is a gift to be opened and enjoyed and appreciated. Even if it doesn't fit or it's the wrong color or it's itchy or it doesn't work and the directions are badly translated from another language, or it got broken in the mail, or I simply can't use it. Whether I open the box and find something beautiful or something funny or maybe something that isn't quite what I had hoped for, nevertheless each and every day is a gift wrapped up in shiny paper just for me, and it was given with love.

Happy New Year!

About Me

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I'm a lucky lady. I have a wonderful husband of 27 years, a fantastic 25 year old son (I'm so proud of him!) a loving and supportive family, the best friends in the world, a job that I love, and... Parkinson's Disease. I was diagnosed in September 2006. That was a jolt, but I'm learning to deal with it.