Left leg getting involved

When I am off, my left leg now has a tremor. Very different from the right side, it's mostly in my thigh. I was hoping it was going to take a lot longer to get symptoms on the left side.

Sinemet doseage

From a post I made in the forum on plm (patientslikeme.com);

05/30

I'm taking 8 25/100 per day now, on an uneven schedule. 5am (2), get up at 5:30,  8-8:30 (1) 11 (2) 2-2:30 (1) 5 (2). Then I go all night without. I go to bed about 9. I actually notice the 1 pill at 8 and 2 brings me back to 'on' for a while and I can then wait for the 11 and 5 dose. This is all to try to schedule around eating and driving.

Update 06/12 - I had been too lazy to cut pills in half, but in the interest of trying to smooth out highs and lows I decided to adjust again. So now it's two pills at 5, then 1-1/2 at 8, 11, 2, and 5. Same amount of pills per day. Interesting side effect though - dyskenesia has started in my foot. I sure was hoping I could put that one off for a lot longer. I think I'm going to try actually reducing the amount of Sinemet I take by a little bit, and see how that works out.

More than one year later

It's good to be back here and see how long it's been since I made an update. I'm typing this post with both hands (which is amazing) and it's 8:30pm Sunday evening. Last pills were at 4pm.
I'm taking two pills three times per day now (5am, 10:30am, and 4pm).
Although I feel like I'm progressing too fast, the history here shows me that's not true. It must just be that I'm not happy to be where I am, regardless of how long it took to get here.
I do have definite on and off feelings, and can notice much more how the pills help.

Dose reduction - perhaps not

On my last visit with my MDS I mentioned that I was only taking three pills per day. He suggested that I might want to try 1.5 pills 3x per day. I haven't tried it yet.

A few weeks ago I was in a large crowd in the evening, and I felt like I could really have used that 4th pill. That was a new feeling, as I haven't had any kind of off/on feeling until then (or since).

Sensitive finger

Strange feeling lately. My middle finger on my left hand is very sensitive to cold. Just started a few days ago.

PD related? or something else? Dunno.

Update: it takes me so long to post .....

Today, May 27, the sensitivity is gone.

Time for an update

My participation in the CoQ10 study is over. I had my last visit with the research nurse a few weeks ago, and now I'm just a regular PD patient. And this means ...... I've started medication. The doctor evaluated me and thought I didn't really need to be on meds yet, so I explained how I had difficulty driving because of the stiffness (dystonia) in my right foot. Then he said that since this is a safety issue, he'd rather put me on the Cadillac pill (Sinemet) than risk using anything less effective and have me get in an accident. I'm still interested in left foot driving solutions, but I'll see how this goes for a while first. I may even be putting off giving up driving a manual transmission for a while too.

How's it going you ask? Well, first thing is I'm typing this with two hands. It's not easy, but I'm getting through it. My right hand hasn't typed in a long time, or done much of anything else, so I'm getting used to just using my hand also. I'm feeling quite a bit better, and I only reached the full dose (you ramp up) a few days ago. My foot is alot less stiff, my arm is a lot less stiff, even my voice feels stronger. I haven't felt this normal in quite a while.

I've been working since the end of November, starting in Holland, MI and now thankfully in Troy, MI. So I'm crossing the border again every day. Work has been very busy, and exercise has unfortunately taken a back seat. We did get Wii Fit, and I've tried it out a bit. Judi is more disciplined though, and she's enjoying it.

Mobility issues

....show up in unexpected places. Somehow I noticed that my right thumb can't close as far as my left. I've been stretching to try to get the mobility back, but it's not happening yet.

Check out the difference in how far my thumbs are closed;

I'm closing them as hard as I can. I can bend it a little further by squeezing it inside my fist, but I can't make it go any further on it's own strength.

Hand shakes

No, not the tremor.

Yesterday, while being greeted by others at church and shaking their hand I was finding it hard to let go. It made for some awkward moments.

I really appreciate the connection of a handshake or a hug. I'll have to figure out how to disconnect quicker.

Summer 2010 update

I haven't noticed a lot of change since March. I'm getting a little faster at one-handed typing. I'm back into biking, almost every day - being at home has taken away my excuses. I've only missed two days in the past month, and I'm doing about 6 miles per day.

 Judi and I are taking a vacation in July - at a cottage on Hall's Lake with her mom, brother and sister in-law. There's a paddle boat there, so we'll be able to keep pedalling.

Internal Tremors

I wasn't exactly sure what people were referring to when they mentioned internal tremors, but I think I'm getting an idea. Last night my hand (along the meta-carpals area) was 'twitching' mostly internally; so the best way to describe it seems to be; 'internal tremor'.

It sure doesn't help trying to get to sleep. Unlike the leg and arm tremors I have, the internal tremors don't stop when I'm laying down.

Eating

I'm getting lazy with the use of my right hand, and I'm starting to eat left-handed more often. I need to focus on "getting through it". I wouldn't want my arm to fall off :-)

A long day with a late lunch

Judi had her liver surgery today. We were at the hospital at 6am. I ate breakfast before we left, then had a butter tart and a granola bar by about 10am. I drank a bottle of juice also.

I expected Judi's surgery to be done by 2pm, and that I would go get lunch when I knew she was out of surgery. I was talking with our pastor while waiting, and I couldn't get my leg to stop shaking. I was feeling pretty hungry, but I really wanted to know Judi was out of surgery. By about 3:45 I knew I really needed something, so I drank a coke. It helped quite a bit.

So, I'm finding that I'm also much more susceptible to shaking when I haven't eaten in too long.

Sometimes it's a few steps back

Generally I've been feeling like my symptoms are progressing forward, always forward. I've been sick with a fever for the last few days, and really noticed how my hand would have a long lasting (I guess 2 to 3 seconds) tremor after I would use my arm.
Today, I'm feeling a lot better (no more chills, etc. from the fever) and I'm feeling much more "relaxed" in my arm, leg, and face.
Maybe because it felt so bad for the past few days, I'm noticing even more when the symptoms take a few steps back.
My hand isn't completely still, but I'm noticing that my leg and face feel much better - and it feels great to have a feeling of "normal" for a while.

Coffee is out

Tuesday night I was up late. Wednesday morning I paid for it, and I was pretty tired driving to work. I had a coffee right away - and promptly paid for that. I was shaking a lot, and it was difficult to type. I was getting a lot of double hits on I and O.

Thursday, I had outplacement training. Just standing talking with people, if my right hand was free it would be shaking. I'd have to rest my hand on a chair or put my hand in my pocket to get it to be still.

Typing

Typing can be a bother, depending on how high I'm lifting my hands. I never can tell how much my hand is going to shake.

Yesterday I started typing and my hand shook very noticeably and I had to pull my arm away from the keyboard. There was no warning, and I pulled my hand back to my lap to get it to settle down.

Right now, it's hardly shaking at all. It's unpredictable.

I'm finding at work that it helps me to put a squeeze ball in my hand if I'm just clicking and not typing.

Shivering

This morning at work I was standing talking with someone and my arm started shaking so much it was like I was shivering in the cold. It's the first time that happened without any assignable cause.

I'm finding that if I'm cold, my right arm will shiver much more and much sooner than my left arm. If I'm exerting myself, it's the same sort of thing, but today was the first time my arm shook like that with no apparent cause.

New sensation

Had a "new sensation" last night.

Anyway, the sensation was actually a feeling of my arm being "normal". I could actually feel something like the waking up after your arm has been asleep (without the pins and needles feeling). Still today, my arm has that warm kind of feeling - even though the shaking is not gone.

Waking Up

I just recently noticed that I'm shaking (arm and leg) some mornings even right away when I get up.

Status update

Things I notice;

• I have switched hands using the computer mouse. I now use it with my left hand, as my right isn't precise enough
• When I eat, I like to lift up the plate or bowl so that my hand doesn't have to travel so far. I very often shake when eating, but I'm unwilling to start eating with my left hand
• My hand and foot feel like they have a tendency to curl
• My right arm doesn't swing when I walk
• My right arm shakes involuntarily when I yawn (, etc.)
• things I do with both hands really highlight the difference; putting on deodorant under my left arm is very difficult compared to under my right arm - my right arm just doesn't respond the way I want it to
• I'm not confident when I carry something in both hands, especially drinks as I feel like I'm going to spill the one in my right hand
• I like to have my left hand free to grab the handrail when I go down stairs

I'm sure there's more I'm forgetting. I'll post as I remember.

Caught

One of the men at Bible Study noticed. He saw that I don't move my right arm very well, and that it shakes.
He's the first person to notice.