It has been a long time since I have been here. Will everyone please just take a few moments to let me know how you are doing? Also, if someone is no longer here, will you let me know why?

I am doing okay. I am needing more and more medicine and it is working less and less.

I used to get up and be able to move around before I took my medication. Now I cannot get out of the bed until I have had my medication. I am on sinemet CR and the fast acting and I am still on the Devil's drug Mirapex.

I am still able to work, but that is due to sheer determination. My job has very long hours and lots of stress. I do not think I will be able to work in another year. That makes me very sad. So then, I will be sick and poor.

I love the beach and I am able to walk along the shore quite often. I try to exercise regularly.

I hope to hear from everyone soon. Oh, and I added some more recent photos

Mary Frances

Everyone sort of disappeared for awhile, but we couldn't find another place like it so we came back. Lot of new folks here but they are a pretty decent bunch and learn quick and then add to the knowledge heap themselves.

I am doing pretty well myself, or at least I think I am. It has been pretty weird on a personal level the last two years. As if PD weren't enough, tornado trauma was added to it. Near miss but bad enough. But I seem to be getting over it.

Welcome back.

Good to hear from you, Rick!

I welcome you back also, Maryfances. I was delighted to see you posting again on the "Never-Ending Story" thread.

I'm halfway through my 11th year, post-Dx. Still able to get out of bed unaided in the morning, albeit with the shuffle-walk. Meds first thing, firing on all cylinders 40 minutes after 1 50/200 sinemet CR and 1 25/100 regular sinemet. Later in the AM I take a handfull of multi-vites, extra vitD3, along with 100mg amantadine. The 50/200 CR and 25/100 reg are repeated twice at 5-hr intervals. That allows me to function about as well as most 73 year olds until 9 or 10 PM. I still take dextromethorphan, about 4 mg in OTC pediatric cough syrup, at bedtime. I think it has slowed progression of symptoms significantly.

I have been retired for almost 5 years, but am allowed to maintain an office at my university where I attend noon journal clubs and weekly afternoon seminars. What is most enjoyable is the opportunity to stay in touch with and encourage younger researchers, especially some who are working on discovering causes of Parkinson's.

I feel very fortunate that I did not begin experiencing serious symptoms until later in my life. My progression, though slowed, is inexorable.

Younger people like yourself have a really difficult path to walk. You are the ones for whom real progress in defeating this disease needs to happen NOW!

Wishing you the best,
Robert

Hi MaryFrancis,
I am still here and fighting PD on all fronts. I am doing OK, after 20 years of PD, I can get up unmedicated, shower and dress, let the dog out and get breakfast ready. I get up about 6-00am, and go on the computer for an hour or so until my wife gets up. Then i take my first meds at 8-00am. I manage on 200 mg L-Dopa or less per day. Even this tiny amount gives me raging dyskinesia. I have difficulty swallowing, and cough up food up to 2 hours after taking it. I am 75 this month and have been retired for 14 years.
My non PD ailments cause me more trouble than PD!! I have a dislocated shoulder which they say can't be put back or it would just fall out again. They say the tendons holding it in are snapped. My arm is very weak and getting weaker.This is the result of a bad fall. My balance is not goodi have a large hernia which the specialist advises against operating on. He said it won't grow any bigger but he is wrong!!. Then I have a number of non healing spots from sun damage which the docs treat with liquid nitrogen. As soon as they are removed they pop up again saying helloooo!!!
I work with a London hospital, doing voluntary work for the PD research team. I travel to London every 2 months for talks and they treat me but nothing experimrntal. I have just joined a UK organisation, Parkinson's movement, as an ambassador, (Peggy has also). I still maintain a half acre garden, with no outside help. All in all, life is good and i am enjoying it, as i said in another thread. I think a positive attitude helps a lot, concentrate on what you can do, not what you can't.
best wishes to all.
Ron

Wow! Robert that is great! What kind/brand of cough syrup?
Great to hear from you!

That is the first time I ever heard anyone say that about PD!
Good to hear from you Ron!

Hi Maryfrancis,
You have me intrigued!
you don't say exactly what surprised you.
Cheers
Ron

BE CAREFUL with the Dextromethorphan...

If you are on an MOA inhibitor

such as Selegiline or Rasagiline

the combonation can cuase a terrible and dangerous condition call A Serotonin Syndrome.

I learned the hardway a few years ago. Terrible experience but I survived it.

Robert 1965,
It is critical to know that i take dextromethorphan as a low-dose neuroprotectant. I buy pediatric preparations that are already more dilute (7.5mg/tsp) than the cough syrup for adults, usually at 15mg/tsp. Further, my nightly dose is slightly more than 1/2 tsp, about 4 mg of dextromethorphan. The suggested dose for children is 1-2 tsp at 4-6 hr intervals