How are you feeling?

[ol'cs]

Our ability to want to post here goes hand in hand with how we are feeling at the moment. If we have been "thrown off" by a wrong medication regimen, we often feel like getting it out there. Not like we are talking to our doctors, but that we are talking to real live PWP, people that might have encountered the same problem and may have some suggestions toward a "fix". For example, many of us are undermedicated , and for a good reason. Sometimes , following the dosage recomendations given by ones neuro are simply not right. This can make us feel really bad, and one doesn't know that it is a medication problem, but instead tends to blame "it's just PD".
Sometimes , i get so hyperactive and it's before my next dose. What does this mean. I don't know. I'm sure my doc doesn't know. However, many of us have felt the same reactions at one time or another and can say "it was the requip" or whatever.
Certainly, one should never quit taking a drug without a slow down titration, but if this seems to work, it points to the medication, not the disease itself. Take depression for instance. Now I can't miss a dose of effexor, or I just "fall off the cliff" in short order, but is this related to taking the medication at the wrong time? I don't know. And there are so many "i don't knows". We don't know if natural or herbal supplements are really doing any good. We don't know if what our neuro prescribed is an optimal medication for our "individual" case of PD, and we don't know what would be, unless we try a whole gamut of drugs, which we need access to try and see if there is something better, for our individual case of PD.
My point in this point is to "pester" your neuro to try different adjuncts to enable you to "see how you're feeling". I am convinced that there is an optimal drug regimen for all PWP, but we are sorely in need of the attention of an expert in order to "hit the nail on the head".
So for all you PWP who are "feeling badly", don't give up on it. Post your problems here and together we may be able to suggest what you may ask your neuro to try next. And there are also herbal remedies that can make you feel better, but this demands the input of an expert in the subject , one that is difficult to find, because their numbers are so few.
Remember, you CAN feel better, but it demands input from professionals, as well as information that we collectively can give you at this site.
If at first you don't succeed, try, try, try again. cs

[Stitcher]

:I-Agree:

You are so right, CS!!

Please ask questions!!

[wendy s]

I feel like this thread was aimed at me! Thanks, CS.

I've been on Mirapex 0.75 mg and 100/25 Sinemet CR three times a day for nearly two years now. For the last couple of months, I'm noticeing that they take about an hour to kick in, last for about 3 hrs. and then don't seem to be working. So I'm left with feeling stiff and "gimpy" the middle and end of my working day. Overtime is a waste of time.

I see my MDS the end of Jan. I'm seriously considering stopping work and going on disability, I just don't feel competent and safe anymore, plus I have no energy after work to do anything else. The thought of not working is scary and appealing at the same time. I've been a physical therapist for nearly 35 years and have loved my job until recently.

I was diagnosed five years ago, about a year after I noticed tremor, incoordination, and a limp. I"m 54.

Any suggestions and/or information very much appreciated.!

[paula_w]

posted and lost it...so later! Paula

[CTenaLouise]

this is for posterity - so we may as well tell it like it is! :D
this is my 10 cents - I won't give an opinion for less. :p

The emotional side of illness -

when medicines work... it gives us the tendency to take the extra energy for granted - however we will usually pay for our lovely day - then next day,
unless
-it is sunny and you have someone you like come to visit...
and in that case the happy chemical's -save us!

Depression and not enough sunlight make the regular people feel down.
so people like me can feel lifeless, and have zero life energy.
however I really do not think I have ever met a regular person :rolleyes:

and for this reason may I truly feel happy

anyway - on those grey midwestern days - I put a bright light by my
window, and sometimes I forget it's cloudy...

or I will read funny joke books -
funny movies - with Steve Martin in them...
"Dirty Rotten Scoundrels"
"My Blue Heaven"
"The Jerk"
and it most definately will make me feel sooooo much better.
I am thankful for those wild and crazy guys...

we are a cumilative collection of our thoughts, so it is okay to cry but
time yourself and then shake it off! pun intended! ;)

http://www.ahajokes.com/crt030.html

[ol'cs]

At the beginning of sinemet therapy; the honeymoon, means smooth, well co-ordinated response to the effects of Dopa. Then we get what we cant control; dyskinesia and dystonia.
The average time that a PWP can handle a job after diagnosis is averaged at 5-6-7 years before they are legally disabled and working and fighting the disease is too much. SSDI now accepts PD as an incurable, debilitating disease, so you shouldn't have any problems there, but like I've said a thousand times , and i'll say it a thousand more if i have to, every young PD victim, get ALL the insurance you can before the dianosis is made. This tiny bit of information could be the ticket to a "life after PD" that is tolerable at least financially. If you just hit this post right now and are thinking that you might have ANY neurological disease, get covered quickly as you can , while the answer to "do you have parkinsons disease" can be honestly answered "NO"
Now to you wendy s. WE had great discussion in the archives about how to deliver a constant amount of Dopa, using sinemet tablets. Many of us found that crushing the tablets and chowing that mixture down gets you going in 15-30 min. well, that perhaps works the quickest by oral route, there's not much finesse at all is there? That's why the quick action of an oral dose of chewed sinemet demand sit gets into the system quickly. Crushed sinemet is practically tasteless so you can dissolve your days ration in say a bottle of apple juice, and take as needed every 15-30 minutes. This has proven to be different than sinemet CR, because it's patient controlled, you get a good "feel" as to how much and when you need to take dopa (shake before using).
AS far as the mirapex goes, quite a few of us find it as benefitial co-therapeutic along with dopa; and a lot of us don't. It's probably better than ReQuip (however some PWP really take to reQuip, you have to try it. The lesser potentcies of Amantadine and a number of adjuncts to sinemet have to be tried out one by one, to determine your optimum response from the optimum choice arrived only by trial and error. That means a lot of fiddling with PD drugs. YOu'll get it right, but it takes awhile.
And retiring? After 35 years you've given to the world more than it's given to you. Go for it! you can't take your 401k with you:D cs

[ol'cs]

I usually charge 8 cent's but have never billled anybody:D
There really is a lot of information if we are all serious about fixing OURSELVES.cs

[scotch1]

Possibly adding comtan to the sinemet will help extend your on time with sinemet.This can be done with stalevo(Sinemet + comtan) or taking comtan as a second pill.Stalevo is expensive but does cut down on the # of pills.Not all handle comtan well.In my case I have found it quite effective.

[paula_w]

ok trying again.

Wendy, you have listed the classic reasons people give when they talk about retirement. It is affecting their job and they have no energy for anything else but their job. Sounds like it's time to at least check into it.

Cs, after having pd for awhile, when the meds are playing havoc with you, I think what you eat and when you eat it is just as relevant to how well your med is going to work as anything else. Too much meat and I know I am going to go off and try to remember to take extra med before I eat. Sometimes even extra med isn't enough. A big breakfast is just asking for it. Protein blocks your meds, but just too much food seems to also.

No sleep? Chances are your meds won't work as well. Fight with your spouse? Instant off.

You mentioned a hyper feeling. I know what that feeling is and I hate it. There is such a thing as "end of dose" dyskinesia. I don't know if that applies but I think our insides are doing things just as tight and rigid feeling as our outside is. I become dehydrated from the meds by afternoon and that can cause pain and do weird things to your muscles.

How do I feel? Depends on which half hour of the day you ask me and I know you know exactly what I mean.

What you eat and how much you eat becomes very important though.

my two cents,
Paula

[ol'cs]

Gets mish-mashed into the component amino acid building blocks and neurotransmitter precursors. Now you are trying to get taken up by the brain from the blood , amino acids for building functional brain tissue, but dopa with one extra hydroxly group on the aromatic ring of it's structure (something that a brain enzyme acting on absorbed tyrosine must do anyway, before we get any dopamine) has to do it metabolically anyways. Thus, every amino acid that is roaming in the vicinity of the blood brain barrier is either allowed in or it's not.
Dopa has to "compete" with absorption of all other essential amino acids,and pharmacologics dictate that less dopa gets into the CNS when blood concentratins of other amino acids are high.
Eat meat when your body is purged of other food, and in small amounts. WE get enough protein in our western diet to kill a horse so to speak, so one must hardly ever worry about protein consumption, just when it has proven to be opertune times to eat meat; none if you're a vegetarian (perhaps best), 4-6 oz/day of anything from prime rib to baked clams, otherwise
A spartan diet is usually in the wings for a pwp, because inactivity leads to easy weight gain. Among a whole host of things like heart trouble, (clot formation, and cardiopulmonary weakness) have to do with lifestyle.
My suggestion
Rome is burning, grab a fiddle and give it your best shot:D

[CTenaLouise]

If I were still married, I would be pushin' up the posies


I am very happy, I love people, but enjoy my peace - and to have peace,
I must have my own space... I enjoy things at my own pace, I have one love
in my life, and he is my Lord...

my son = I love even if he hates me...
I have no energy to waste...
but ironically I am always involved in fighting -usually the good fight,
and I used to love it, but now -not so much!
I make a great friend, but a terrible spouse.

[reverett123]

:) Don't assume that protein is a problem until you test it on your own body. I find that lots of protein first thing in the morning works wonders for me. Stabilizes everything.

There are many myths about PD and this is one. Lieberman had an article on his old website saying the problem actually affected about 20% of us. So try it on your own metabolism.

One of the maddening things is that PD is a little different for each of us. It is like an overlay on our individual systems. If you are more stress sensitive than me then your PD is going to be different than mine. Each of us has to test the particular balm on our specific body/minds to know.

I have begun a very simple testing program that really works for me. Time yourself standing on each foot. How long can you balance on each leg? Do it under a constant set of circumstances ("on" state in mid-afternoon for me) and do it for 5 to 10 days for a baseline. Get a fresh baseline before you start anything new. Then record how things change over the next few weeks.

In my case, I have found that my "basic" group of supplements really do work - for me. In fact, they more than quadrupled the time for my strong leg. Now that I know that it makes it so much easier to face that little handful of expensive pills.

The leg balance may seem silly, but actually it is a superb test for PD. It requires no equipment, training, etc. It is non-invasive and cheap and can be done in private. Most importantly, it measures simultaneously strength, muscle control, sensory feedback, postural stability, etc.

And by the way, my "core" supplements mentioned are alpha lipoic acid, acetyl carnitine, L-carnosine, green tea extract, and ginger extract. I plan to add turmeric back in soon, but those five with a multi are the ones I tested above. If you decide to try them (they function as a group) then for goodness sake, test, test, test!

[GregD]

Today, that's almost an obscene question. I haven't figured out just what the problem is today. I feel like I was run over by a big truck. I haven't changed my daily routine. I've been a good boy and have really watched what I'm eating. Today should be no different than any other day. Yet it is. My entire right side (affected side) just aches. Both biceps hurt (the upper half towards the shoulder). It's not in the joint so I don't think its arthritis. It feels like I've pulled the muscles somehow. I haven't done anything to pull the muscles though. To top it off my right eye feels like it has a (stye??? )comming up on it.
I think I'm going to go back to bed and start all over later.

GregD

[lindylanka]

Happy but knackered is what describes me today. Yesterday I cooked myself to a standstill, had my many wonderful women friends round for an evening of non-seasonal eating, in true eastern style. This meant large pans, loads of chopping, and a day on my feet, not to mention the fact that I simply forgot to eat anything myself! By eleven last night I simply could not move, only barely managed to get myself to bed after a leery look at the sofa, which is not long enough to sleep on. Today, meds are slow to kick in, and i'm a mass of achiness. But happy. It's the first time in several years that it has been possible for me to entertain, my two sons have been great, and I am looking forward to a year in which I will have time to do things that I love - make art, garden, cook, keep house, and be with friends and family. PD has taken quite a lot away from me, work and so on, but it has also given me back some things. The best of these is that my time is my own. So there are limitations - but I am not letting much stop me at the moment!

In the spirit of welcoming a new year I am planning to go for Chi Kung classes to help my flagging energy levels, and keep me active in doing something away from home. Not exactly a resolution, but making a new choice. Would love to hear what others are planning!

By the way what DO people do about PD achiness and that run over by a truck feeling that Greg describes. I haven't found anything that works consistently yet....

Best wishes for 2007 to all. It would be good if it were a peaceful year. I wish you happiness, blessings and peaceful hearts.

Lindy xx

[paula_w]

Rick, I certainly agree that everyone is different, and I hope for others' sake that the protein thing is a myth. I just want to add an important point. This seems to come with advanced PD; I didn't notice any problems with food for quite a few years.

Happy New Year,
Paula

[stevem53]

The past 2 summers I have felt great..Now entering into another winter and feeling worse I am now convinced that the weather effects pd..I estimate that Ive progressed at least one fold in the past year..My gait is unpredictable, and my coordination and balance has worsened..When I walk across a room with a full cup of coffee it is like walking on a tight rope trying to control my balance and gait without spilling a drop..I have however gained control back of my left hand strangely enough..I had noticed a difference in my typing for a period of time but it has been restored..I still dont seem to have noticable off peroids..I feel good during the morning hours whether or not I happen to forget to take my meds..I never feel the meds kick in unless I take a 50/200 that I take in place of the usual 25/100 to enable me to go out fishing..There was one day however that I took a 50/200 and was just about to walk out the door when the phone rang and it was the man who bought my boat, and wanted to know if he could pick up the spare net at my house that came with the boat, so I said that I would stick around and wait for him, and therefore couldnt go out fishing that day..My body was reving and my leg left leg wanted to take off..dyskinetic like..Sometimes Sinamet makes me feel that way especially if I take a rescue dose when Im very fatigued..It doesnt help..just revs me up..it feels like misplaced energy that doesnt contribute to fixing my fatigue..Is this what dyskenisia feels like?..I also have situational fatigue/blahs..Emotions seem to dictate how I feel physically in any given situation..To sum it all up..I feel like I have pd now..It effects my whole body now to one degree or another..Definately no honeymoon for me..But still manageable

[BEMM]

Some of us older onset PD'ers, myself included, write posts that sound like bragging: "I've had PD for 10 plus years or more, and I still feel really great".

The reason for that has got to be that PD does not hit you as hard when you're older. First of all we've had the luck to have years of normalcy before the PD monster struck us, second, we have time to be slow and stiff and achy, and third, very likely because of the two first reasons, fewer of us seem to suffer from depression, the daemon that makes PD much, much worse to bear.

So here is my boast post: I feel better in many ways than I did two years ago. I still don't have real offs, I feel good when I wake up in the morning, and can shower and dress before taking meds.

I AM stiff and slow, my left leg and left shoulder often hurt, sometimes I walk like a drunken elephant, off and on my feet forget how to walk, and when I'm really tired my smile looks false and insincere and my balance leaves me altogether.

But aside from that I am doing well. For the last 2 years my meds. have been 8 1/2 or 9 mg (varies) Requip, 1 1/2 pill 25/100 lev./carb. and 100 mg amantadine per day.
My supplements are Flax seed oil, fish oil, vit. C, vit. B-complex, calcium, magnesium and CURCUMIN.
Unless a placebo effect can last 2 1/2 years, the Curcumin is what helps the most.

Steve, I am convinced that weather has an enormous influence on the way we feel. High pressure makes us better, low pressure makes us worse, no doubt about it at all.

My med. and supplement cocktail helps me function. So - who knows - it might help someone else as well.

birte

[DaleD]

I had an up/down week. All my biological kids are here for the holidays and my birthday so my sleep patterns have been altered substantially.

Saturday night I layed down early and the kids were going to watch a movie at my daughter (she lives below me in my duplex). I went to sleep or thought so. The next morning I asked my son and his girlfriend when they got home. They said I was sitting in my recliner watching tv when they came up. I asked if I said anything since I didn't remember them coming in. They said no but my eyes moved with them. STRANGE!!!

Yesterday they got the idea to drive 240 miles to a Sea Life Center. It had snowed more than 2 FEET in the prior 4-5 days. I agreed to go along but forgot my meds. I went the entire day with only my initial morning dose. I was suprised when the worst that happened was my speech was pretty slurred by the end of the day. I'm wondering if I really need all the meds I am taking.

Today however I have Greg's aches and pains but not as bad as I have at other times. I am thinking that may be because I haven't done anything but sit and watch football and seeing my Cornhuskers lose in the Cotton Bowl!!! My daughter is cooking some halibut tonight that we caught last summer so that may perk up my feelings.

[paula_w]

Hi Dale,

Do you take Ambien to help you sleep? Your sleep walking experience sounds like an ambien induced story. I could tell you a story about Peg that was so funny it even made us laugh after losing one of our closest friends in a car accident - it even made his wife laugh. It has to do with trying to reach a doctor in the middle of the night. But first I'll wait to see if what you are experiencing is not funny or material for a chuckle.

paula

[DaleD]

Paula,

No I have never taken Ambien. I took Lunesta for a while but it didn't help me sleep that much. My neuro prescribed Rozema but my insurance carrier needed so much information from the doctor and me that we gave up before even trying it. I sometimes take a Tylenol PM clone if I have aches and can't sleep.

I didn't walk in my sleep just apparently was sitting there with my eyes open and appeared to be awake when I wasn't. I do go into wild gyrations when I am asleep. I have been told I sit up and scream and throw things that are handy. I frequently enact what I am dreaming about. I have dreamt I was kicking someone and woken up kicking my legs in the air. Once I dreamt I was beating a guy who was bothering some kids and woke up leaning over in my recliner slugging the footrest between my legs. What is strange about all of this is I have never been in a fight or hit anyone, even in a fit of rage. I'm glad I'm single as it would be quite dangerous for someone sleeping with me.

I'd love to hear the story about Peg.

[rosebud]

"there are strange things done in the midnight sun by the men who moil for gold..." Dale, perhaps your experiencing some of what Robert Service may have been alluding to....no? I agree with Tena...I need to live in my own space these days. I love my family but I need my own room, my own bed, my own space to be me. Generally I am not feeling too bad at all. Except I've discovered bread has been busy messing with my meds all the while I thought it was my friend. (I started a short thread so as not to hi-jack elsewhere)
This is the first day I've actually had some time to drop by and spend some time and write a note. Now if I could actually remember what I read I'd probably have more to say. I'm starting Christmas detox this week. When I cut out the sugar cold turkey (unintentional pun) I usually go through a few rough days. But all will be back in its proper place by next week I hope. In the meantime...Happy New Year and hang in there.

[paula_w]

I have to start using Word and copying and pasting, i wrote most of it and lost it but I'll try again in awhile....paula