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.

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!

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

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

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

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

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

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.

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

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.