HI,
My spouse has had PD for going on 6 years. His tremors increased over the years and is mostly pronounced under stress.
You mentioned cold weather and I had to chuckle and wondered how cold you are talking about?
We are having a wind chill factor of -20F tonight so that's really cold, but I don't think the weather makes a difference, other than not being able to walk outside for exercise.
My husband uses a recumbent exercise bike to keep fit, although he has lost strength over the year and lost weight too.. The doctor said the bike won't help the PD but will keep him fit.
Fatigue is his biggest challenge. The only time he has pain is when he is doing something that involves the back muscles, because he's lost strength especially in that area. He has problems rolling over in bed too and that started about 4 years ago.
I thought he needed an increase but the Motion Disorder Doctor said that he is stable and not too dependent. He wants to keep it for the future when it is needed more, so you are correct to wait.
Our MDS explained that it is better to wait when you are more dependent, because if you take it now, an increase in the future won't benefit as much.

I just wondered though why you are taking 2 less pills per day than prescribed. Have you told the doctor about this?.
How many do you take now? Mine takes 100/25 mg. of Sinemet
2 x four time per day.
I know everyone with PD is has different symptoms and the progress is slower in some people than others. We were told that my husband is tremor related so it's a slower progression, so hopefully you are the same way.
Good luck, and I think the main thing is to keep active, if at all possible.
LYNNIE

Well it is far from that cold here but we are far below average. When I go outside it just seems like every joint in my body seizes up. Yes my doctor knows I am taking less than they feel I should. My goal all along has been to get by on as little meds as I could. We are looking at lower teens here (lows at night) for days on end. Just far below normal for us and I am sure that is part of what has me feeling the pain so to speak. Thanks.

The cold makes my tremors worse for sure and i get stiff and hurt more if im out in the cold. Heat kills me the worst though.


peace

Brer T

I am coming on 4 years of diagnosis now but know I had it for at least 3 years prior to that. My pills seem to be doing ok too because I have a stressful job, commute and am not happy about any of it!!!! I need to get grateful. I am grateful I have a job, grateful I don't have to drive to work the engineer drives, grateful my job pays for the biggest part of my pd meds and I am able to take the azilect and patch!!!

My PD is on my left side as well. Anyway, my meds seem to be doing ok - especially if I take them correctly. I think I am starting my 3rd year with 6 pills a day and 1 azilect and 1 patch 2mg. But I can also be very disturbed by the cold and the heat and like Brer T I'll take the cold any day over the heat!!! If I get too cold my tremors will not stop no matter what and I am very rigid but the heat just takes everything out of me and I find I am wiped out and rigid

Everyone have a warm PD symptom free evening. Hugs!!

Deb and Terrapin both make good points. I have just been a bit reluctant to up my dosage until the weather breaks and I can get an idea of how I feel then. Like Deb if it is very cold or very hot I am useless. I guess this is the first winter since DX that I notice the change. Man I hear stories of people taking 16 pills a day. I know quality of life is the objective. I would rather be dead. Upon my DX they started me a 8 pills a day and my body went into hyper drive. Felt sick, sleepy, fatigued you name it. In addition to the pain meds I was so over medicated I felt like a zombie. Many doctors cannot seem to think outside the box when it comes to PD. My provider basically said OK you have PD you need this this and that. Only after countless hours of research and talking to other nueros did I reach a happy medium. I have accepted the fact this is a disease. And on my journey there will be changes. Again I am trying to get an idea is it time for another appt. or just wait out the cold weather.

Good luck Aiks - you are so right with what you said about the doctors - they don't think out of the box. I am having problems with my eye sight - I am having problems with blurred vision and seeing that all started since being diagnosed it is hard to get a dr. to even think that it might be because of the PD. I guess the drs. are only human and there are so many neuro diseases out there that it is hard to keep up with everything. One thing for certain though the less meds the better. As my primary care dr. said - these meds are strong stuff.

When I was first placed on the meds my nuero built me up to taking 1-1/2 pill every 4 hours and that was too much - I was overdosing as well and had the same symptoms as you describe and I went to 1 pill every 5 hours for a while.

This is what my dr. thinks of the thought "less meds are better": she believes that whether I take the meds or not that I am going to progress in the same amount of time and say I started with 1 pill a day and you didn't take any pills and at the end of 2 years my symptoms worsen and my meds are upped to 2 pills a day and you too decide to start the meds now because your symptoms are more bothersome to you. My Dr. thinks that you would not be able to maintain symptoms with 1 pill a day but would have to be brought up to 2 pills a day right away because the meds don't stop the disease because it is progressive. So I look at it this way way: I already have had at least 3 or 4 years of pd already when diagnosed so that is why I started with the smaller dose 1 pill 3x a day but was brought up to 6 fairly fast to my present 6 pills a day which I have been on for going on 3 years now. But another consideration I have to keep in mind is my age - I am 64 years old and not 34 like many of the early onsets.

So that is what she thinks anyway. But I don't think she is looking at what this medicine can do to the body - the long term effects. When I retire sometime during this year, I want to reduce the sinemet a little and see where that goes. It is good we have a disease that gives us choices and time!!!

Again good luck everyone!!!! Have a wonderful day.

I haven't been diagnosed long enough to have data, but I can see the singularity and complexity of each of you/ someone s hared it's attitude and you all sound positive. Thanks for all your hard won information.

Thanks Deb and Annie. Deb I did the same as you I started out with 1 and 1/2 pills.. Was supposed to be 4 times a day. I now take 1pill 4 times a day. Yeah doctors can be confusing. The last time an intern suggested I try Mirapex as an added med and the resident decided no. I cant convince them that if I am not under stress and doing something I like my tremors nearly cease. Of all the illnesses I have seen people fight and read about this is a strange one. And Deb is right I think it confuses many docs.

I try anything before i go to see the Master Pill Dispenser. Hang in there aiksnpains...........


peace

Brer T

"I would gladly pay you Tuesday for a hamburger today........" (Whimpy)



BT

I was diagnosed October 2013 but Movement Disorder Specialist said I've had it since at least 2012 if not earlier. Just had to apply for
OPERS disability so am waiting to see how that goes. Was an Equipment Operator but am unable to do that because of balance, gait issues, fatigue,and loss of fine motor control. He also raised my Sinemet 25/100 to 3 pills 3 times a day. Got rid of my tremors and helped gait but still have balance & other issues. Still cold here in Northeast Ohio, wind chills -10F tonight. Can't wait till spring.

Hi aiksnpains,

I bid you greetings from down under Australia.
This is not advice rather it is input.
Neither is it a diagnoses, I am certainly not qualified for that.

With your mentioning of increase pain and tremors, together with head movement, it was this that caught my eye.

Having been diagnosed sixteen years ago I have experienced most of the symptoms that this impostor we call Parkinson's Condition can present and throw at us.

With similar symptoms as your good self, and going off my own experience, these increases, especially the movement of the
head,were the factors which lead me to be referred,and to undergo DBS procedure.

Perhaps a consultation with your treating neurologist may will confirm and add some light to this issue described by your good self, which seems to indicate dyskinesia.

Sent in good faith, I wish you well.

aliveo / Stewart

.

Dosing with Sinemet:
I have been on Sinemet for 9 months, and take 1 1/2 tablets 6 or 7 times per day.
When the Sinemet wears off, the time of which varies from day to day, I have bad dizzy spells with anxiety and panic attacks too.
Does anyone else have this, and have you found anything which helps?
Thank you for help.
Diana Matthias