New to all of this
 

Hi,

I don't know where to jump in so I guess this is probably as good as any.

I was diagnosed with PD about nine months ago. Right now it amounts to a "funny" feeling on my left side. Most everything works well enough except my left hand...my writing hand...I can't........much. Not being able to easily button my right sleave and fine motor skills in that hand led me to the neurologist. Balance is ok as is my overall strength.

What has been most bothersome is the overall feeling of being "ill"...just not feeling well. Depression, over and above that which is normal due to circumstances a person runs across, feels like a giant black wave that shows up unannounced and can hang around for an hour or so, or all day. My limited reading on PD indicates the dopamine deficiency could likely be a reason.

Personally, at this point I can deal with the minor motor deficiencies I have but the overall effect on my general mood has affected a very close and dear relationship I don't want to lose. To that end I saw my neurologist today and asked to be put on as mild a regimen as possible. He prescribed Sinimet (sp?). It was filled as a generic cabidopa-levodopa ER 50-200. He wants me to take two a day...morning and at dinner.

At this point I'm lost so I guess I'll just ask for any comments.

A select group we are...
 

Welcome to the forum. You'll find quite a bit of good information here on research, meds, supplements, and in just coping. We have quite a few thoughtful and intelligent people on board here.

Have you noticed any difference since starting the Sinemet? My earliest symptom was an action tremor- only while handwriting, so I know well how it feels to watch things slip away. I only started to notice a slowing down so to speak several years later. Sinemet has done wonders for my tremor; my handwriting is still for crap and hardly legible on paper, but it has allowed me to write legibly on a white board...something that as a teacher-librarian I really began to avoid.

Please feel free to share how things go as you get used to meds.

Laura

Don't start the meds yet if you can help it!!!!
 

Get on an antidepressant such as zoloft this will help the dopamine which is a feel good, mood elevator in the brain. Your symptoms sound way too minor to be medicated yet, in my opinion. Sinemet is like crack, once you go there you can't go back.

I was diagnosed in June, my symptoms are mild (right hand tremor and stiffness) and am taking Azilect (rasagiline) 1mg/day. After a couple of weeks I felt a significant improvement and am currently quite stable.

Don't forget exercise. It's as important as medicines.

I would try the low dose of levodopa. It should do double duty- help your hand and help you feel better.

I know PD is a scary diagnosis, but try not to worry about the future. Many us remain very active. I have had PD over 10 years and my life is mostly normal. I tire more easily than others and I use a cane, but many people don't know I have PD. I was surprised on Sat. that one of my students who had not seen me outside my music studio did not know I had a cane and did not know I had PD. Another surprising thing- I tap dance! When I started using a cane 10 years ago, I thought I would not dance again. Then I read about dance classes helping people with PD. I was even in a parade on July 4th- I had to ride in a van because I could not walk a parade route, but each time my group danced, I got out of the van and danced with them.

I am a guitar teacher and have some problems playing guitar, but playing every day with my students has kept me able to play. I recommend doing exercises or using your left hand in some way to keep the stiffness at bay. Get a squeeze ball and squeeze it. I also do exercises I learned in PT for my shoulders and they are a big help- I need to do them every day or I see a difference. When I started having trouble reaching up to high cabinets in my kitchen, my reaction was to put things I use most in lower cabinets. However, when I started doing the exercises and forcing myself to reach up, I soon could do so without pain.

By doing exercises, you will be able to stay on a low dose of meds longer.

Let us know how you are doing. The levodopa usually benefits people with PD rather quickly.

Thanks for the comments
 

Thanks for the comments. I'm sure you read/hear the same things over and over with every new person.

I tried the Sinemet or rather the generic...I cheated. I am supposed to take a 50/200 in the am and one in the pm... I took a half of one at 230 pm and the other a little while before bed. I also took another half early in the am about half hour before I get out of bed. I could tell it works....my hand tremor was mostly gone the next day at work. I think I was smelling odors a little better. My gait, which isn't bad to start, seemed a little better. However, I did not a "weird" sensation a little while after taking each dose....nothing bad, just weird, like when I took Welbutrin years ago for smoking cessation. The feeling went away. That first night however, I woke up two or three times more than usual (usual is sometime early am to go to the bathroom, YEARS old habit). While I was relaxed and comfortable, it took me 15-20 minutes to go back to sleep.

I haven't taken any more since.

I'm reevaluating my need for this stuff at this time. The thing that sucks about an illness is you can't really be proactive as in - you don't find out about these things until you get them. Then you don't know anything about the drugs until they are prescribed because you didn't need to know before. Then the MD gives you his best advice/prescription which he doesn't usually need for himself so you don't know about the "other" side effects/effectiveness until you talk to someone taking "that" prescription.

Have to go back to work........I'll finish this rambling later......

Thanks

Welcome to the forums here.

You've unfortunately started the road that many of us have been on for awhile. If the medication is working, don't stop it. This proves that you need it. As for going to the bathroom more at night, are you drinking more water or other liquids close to bed time? This has been my problem. I take the controlled release version of Sinemet (generic Carbidopa-Levidopa 50/200 CR along with other medication just at bedtime. Bingo! I had to get up at night. I ended up taking the medication a little earlier so that I wasn't so close to bedtime. This has helped quite a bit.

The overall icky flu-like feeling is something that seems to be there all the time. I've learned to deal with it and ignore it. Even with my medication now, I ache like I have the flu, but I don't This I think is part of the disease and partly due to the medication. Dopamine replacement drugs and their relations have a tendency to make people feel nausea, and worse vomit from it. There are some things that you can do to mitgate this as I've found like taking the medication regularly on a set schedule instead of jumping around at different times, for example.

Here's some hints that you'll hopefully find useful.

= Take the medication on a near empty stomach if you can tolerate it.

This will help the absorption of the medication into your system. If you have a hard time tolerating this, try a few crackers or cookies with it. This will keep it down, or at least it does for me. The empty gut helps the medication pass quickly into the blood stream and on its way tot he brain instead of lingering in the stomach to cause the flu-like feelings. For me this doesn't work 100%, but at least it's tolerable.

= Take your medication at the same time every day, or as close as you can to it.

You'll find that by doing this, you'll avod those stiff times while others you'll feel okay. These "off periods" are the times when the medication is wearing off or is off so your dopamine levels have dropped.

= Take your meds with a full glass of water or juice.

I found that his helps with the nausea as well. Please avoid carbonated beverages though! I found out the hard way as my Sinemet 25/100 vaporized in my mouth before I could swallow it. I had grabbed flat soda water instead of bottled water at a party.

= Get out and exercise.

Don't be afraid to walk and move about. There's no rules that say that once you're diagnosed with PD, you can't do anything. Speaking of exercise, don't be afraid to exercise the mind too. This has the added benefit of keeping your mind off of the PD, and focusing on life instead outside. Talk to your neurologist or your primary care doctor regarding an exercise program. They will be able to work out something that is appropriate for you.

= Eat healthy, but small meals.

You'll find that high protein meals tend to interfere with the medication. Instead of eating a big breakfast, lunch, and dinner, eat a small meals or lots of small healthy snacks all day. When it comes time for your evening meal, you can have your protein such as chicken, fish, our beef.

Since the medication as well as the disease will affect the "plumbing", you may as well as get into the habit of eating lots of fruit and fresh yogurt. Instead of going for the candy bar, have an apple or grapes. Instead of the big ice cream, have some fresh yogurt with fruit. This latter items I found to be the biggest help with the digestive system.

= Keep a log book or something to record any questions, interactions, etc.

This might sound crazy, but when it comes time to visit your neurologist, you'll may have gone for a lengthy period in between visits, and your symptoms and drug interactions may have occurred or changed during this time. I keep mine in a simple word doc that keeps track of my progression and history. This works out too should you change doctors. Your doctor, if s/he is like mine, welecomed this information as it gave her a base-line to start with and work up from there. Ultimately my diagnosis was one that I had the gut feeling it was all the time, and not one that was stated previously. (It's funny how things work out that way).

The other thing too, with the log book you'll be able to keep handy any questions you may have at your appointment time. I fouind this to be particularly useful because I suffer from major brain-farts and forget to ask important questions. Oh, I remember them as I drive home, but by then it's too late.

= Be your own advocate.

Don't be afraid to question the doctor, ask questions, and make suggestions. Let's face you are both in this together. Your doctor, hopefully, isn't one that thinks he's the almighty wonder to neurology, and will welcome suggestions, questions. I found that by working with my current neurologist, I been able to do pretty well both mentally as well as physically.

If you find that your current neurologist isn't wlling to work with you, see about swtiching to another one. Sometimes there's a personality conflict that will come up sooner or later. Let's hope it's sooner and not later. Because going to see your doctor, though not exactly a truly fun and wonderful time like going out to dinner or to a concert, the appointment shouldn't be totally uncomfortable either.

I could go on here with more suggestions, but I hope these will at least get you started. Remember you're into this for the long haul so stay positive. There's really not much you can do about it, so try your best to do what you can to lead a near as normal life as you can.

Heck, I've only been in this for 4 years (3 offically), and I'm spewing out expert advice like a pro.

John

As I was saying....
 

The primary reason I initially considered taking a med was to combat the overall emotional "blah" feeling I have which I read can be attributed to the effect of low dopamine on overall mood......the few symptoms I have now can pretty well be ignored or compensated for. What I've read here and other places tells me that while Simenet works well, it will only work adequately work for a given period....5-7 yrs on average....and it is hard if not impossible to stop using once you really start. Given that I think I'll just accept what I have now and start taking it when I "really" need it. For the "blahs" I've resumed taking Paxil which my GP had me on a few years ago for a particularly bad period I was going thru. Incidentally, it seems to combat the shakes that increase in severity when I'm stressed at work (the unemployment office) or when I become particularly upset about any daily issues that make me that way.

I've also decided on two other things......a second opinion for one......and look into dopamine agonists. I don't doubt my first neurologist but I would like to get the take from another.

Has anyone tried the agonists first? I have no doubt I'll be on simenet eventually........I'd just like to make sure I'm maximizing my available time and not wasting the simenet experience on a period when I don't really have to take it.

Thanks

Mike

Do your won research when diagnosed
 

:)I have not been officially diagnosed, but have alot of undeniable symptoms. I have decided already not to take sinemet. Using at this point home grown fava beans & leaves with very good results. If you have space for a garden, consider growing them. I take care of a PD patient that was diagnosed 20 yrs ago & she is also having good results with them & has reduced her sinemet drastically. Do lots of research & listen to your body. Everyone is different/ what works great for one person ..does not work at all for another person. My body rejects chemicals and natural whole foods work best for me...so the fava beans were a great research find. Keep your chin up..follow your heart

I've been on Requip XL 12 mg for about a year and it has worked fairly well for me. I started with it when I was finally diaged with PD (originally they thought I had RA then they suspected MS and I finally went to a mds and he suspected PD on my first vist and officially diaged me with PD on my second visit.) It cuts the tremors way back and helps with muscle spasms and ridgidity, although my gait problems and leg dragging have gotten worse(go figure, it is a progressive disease) but overall I'm quite satisfied with the Requip. All you can do is go for one day at a time. It isn't all bad, you have good days and not so good days, but I will say that after 7 years I'm still working full time as a mechanic, although you never know what's going to happen next. Just keep on keepin' on

Gayle

I was put on Mirapex initially, and the results were okay, but the side-effects were wicked. I was so nauseas from it and it made me so tired, I couldn't deal with it. Sinemet has been my Dr.'s choice for me, and it has worked wonders. I know of the the short-longterm good affects, but the current thinking on this is that it isn't the drug so much as it's the disease its self.

There are some people who are on it longer and some less, depening upon when they start on it.

Do what you and your doctor feel is right, and don't make any medication adjustments on your own without consulting him or her. Your neurologist will be the one that has more experience in dealing with the medication levels, and by working with your doctor, you and he can work out a plan that works for you. By you adjusting the medication on your own, you are causing confusion when you go to your visit. The doctor maybe expecting different results, and you come in on different medication levels that are causing other symptoms that he had expected to be treated.

The early stages of PD are difficult to treat because the symptoms are lighter and you can probably get away with skipping the medication for a time. This is all well and good, but as you'll find out later, things change and sometimes very rapidly. For me I went down hill in about two years from my intial diagnosis. What I thought was bad then is only a pale reminder of what I should of thought of as being nothing. If I could only go back to that level again, boy would I be thinking differently about it now...

Anyway, good luck and please let us know how you're doing. My suggestions to you were to give you something to follow, and to consider now since you are in the beginnings of this journey. By getting into routines, eating right, and exercising, you can keep your symptoms at bay for a very long time.

John