Saturday, February 27, 2010

Still breaking in the new medication

I think adding the Amantadine to my other meds is going to work out fine. I have a lot more consistent response to the levadopa; fewer peaks and valleys. Also, I don't seem to get quite as stiff and rigid in the evenings (or at least not as early in the evenings as before). I do seem to have a poor appetite and occasionally some pretty severe dizziness, but that's starting to go away.

I've also been a bit depressed, but depression is a tricky thing. Sometimes, you have a perfectly good reason to be depressed, after all. Work has been extremely stressful, preparing for a big review for the customer and not feeling ready for it, or adequate for the task. Well, the review is over, thank goodness, and I can relax a little. We'll see; I have a lot of work to do and a short time to accomplish it, so the stress is still hovering in the background. Anyway, I don't think it's the meds.

What a list of drugs I take now! Stalevo (which is really 3 drugs; carbidopa, levadopa and entacapone), Requip XL, Zelapar and Amantadine, as well as the medicines for migraines and for insomnia. Oh well; it works, an I'm grateful!

Friday, February 19, 2010

Fun on Valentine's Day

It's 4:40 in the morning, I've been up for an hour, dystonia is curling my foot up painfully, I'm exhausted, but I'm smiling as I remember how much fun we had last weekend on Valentine's Day...

We took a champagne brunch cruise on San Francisco Bay. When we got to our table, there was a bouquet of tulips, champagne and chocolates for me! Bob had arranged it when he made our reservation. I'm so spoiled! The weather was incredibly foggy (in other words, typical), so for the first half of the cruise, it was like the boat was floating in a cloud. Then, all of a sudden, Alcatraz Island appeared out of the fog, slowly followed by the rest of the bay. It was beautiful, and the weather was warm enough that we could go outside and take a few pictures on one of the upper decks. Here's Bob with the WWII Liberty ship "Jeremiah O'brien" and the skyline of San Francisco in the background:

They had a real live piano player, who was also a great singer, and we danced and danced. It was wonderful! I was exhausted, and I payed for it the next day (I could hardly move), but it was sure worth it. Here we are, after we finally gave up dancing and were recovering at our table:

I'm so lucky to have this wonderful man in my life to share these things with me!

Tuesday, February 9, 2010

What does Parkinson's feel like...revisited

This is an update to a previous post. Symptoms have progressed, and I thought I'd share my experience. Even though PD is different for everyone, I remember when I was newly diagnosed, I found the personal experiences of other people very helpful.

I'm still in the "honeymoon" phase of treatment. The medications are still working GREAT for me (although I've had to add a few, and adjust the dosage of others), so none of my symptoms are particularly severe, usually. Still, sometimes they make life a little difficult. Here's a partial list:

1.) Stiffness/Rigidity. This is symptom has now become public enemy number 1 for me. I feel like I can barely move in the morning or in the evening after my meds wear off, and sometimes when I get a little "wearing off" effect during the day. I'm sometimes surprised that I can actually move; it seems to take so much effort. There are times when I actually break out in a sweat because of the effort to put on my coat or pick up a book. I'll be sitting at my desk at work, and suddenly my arms feel like they have heavy weights on them. I can't make the muscles relax, either, which can cause some aches and pains. This seems to be getting better with the addition of the Amantadine.

2.) Slowness. This goes along with the muscle rigidity. No matter how hard I try, there are sometimes some movements that I can't perform fast enough. It's changeable, too, so I don't know from moment to moment whether it will be a problem or not.

3.) Fatigue. Fatigue is something I've learned to live with. I just have to plan ahead and be aware that I may not be able to participate in everything the way I used to. I may have to take a break, and find some time to rest. I may have to go home a little earlier than I used to. I have to prioritize; is it more important to get the laundry and the dishes done, or to pick up the living room? I can't do both today. However, learning to prioritize is a plus, as far as I'm concerned!

4.) Insomnia. I can't sleep for more than 4 - 6 hours at a stretch no matter what I do or what I take. I'm not particularly sleepy during the day, though, so maybe it doesn't matter.

5.) Freezing and Falling. I have to remind myself to be careful and not try to change directions too quickly while I'm walking. Sometimes, when I do that, one or both feet get "stuck" to the floor and can cause me to lose my balance and even fall.

6.) Dyskinesia. It's a very weird feeling when you notice your body moving without your telling it to. So far, I don't have a very big problem with this, but it happens. I was sitting in a meeting once, unaware that my head was moving side to side until someone wondered aloud why I was shaking my head "no"!

7.) Dystonia. Nasty! Like the worst muscle cramp you've ever had, but....not. I can't really explain it, but it just feels different from a regular muscle cramp. For me, my big toe goes up, and the other toes strain down until it's very painful. The only way to stop it is to hold the offending foot in my hands, which is a bit of a stretch. This symptom is getting better, though.

8.) Tremor. For me, tremor isn't a big deal, except when I'm trying to do fine work. It usually only happens when I'm in a "wearing off" period.

There are many more, but these are the major ones for me. As I said, though, my symptoms are mild. As time goes by, I will post updates.

There are also a lot of things that I've GAINED because of PD though!

Monday, February 8, 2010

Feeling better!

I swear, I respond so quickly and generally so well to all these Parkinson's meds! I've been on the Amantadine a little over a week now, and already my "off" and "on" times are not as extreme, and for some reason, the dystonia has disappeared almost entirely; I haven't even had to take the Baclofen at all. I wonder if the Amantadine did that, or if, like a lot the Parkinson's symptoms, the dystonia comes and goes, and it happened to go just then. Whatever; I feel considerably better.

Tuesday, February 2, 2010

Gentle reminders

Just when I start to feel sorry for myself, I get these little, gentle reminders of how good I really have it. I spoke on the phone yesterday to a friend who's dealing with chronic Lyme disease, among other things. Both she and her husband are disabled and can't work, and now they're facing the possibility of losing their house. She has been denied disability benefits, and doesn't really know where to turn next. And she asks ME how I'm feeling! It's a humbling thing.

I guess the moral of the story is: when you start to feel put-upon, take a look around and count your blessings. You'll probably find more than you thought you would; I always do.

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.