Update: 08-14

Been a while, again, since I posted here. Have been lurking a bit to keep up with things. Most days I am too shaky to type or use my cell phone.

See my oncologist in October. Time for a new PSA, and there are now 3 scans lined up. One in the chest, one from my pelvic area to nearly my knees, and a new test for my bladder (non-functional).

See my neurologist next week, unlike many with Parkinson's, it's progressing very fast. Started out at Stage II, expecting it to be Stage III very soon. On high doses of all the PD meds, but they are quickly becoming ineffective. The memory med appears to be doing nothing.

I have typically 1 or 1 1/2 "good" days (good for me) the will have several really bad days, where I am barely functional. Hands shake so bad, can't hardly write, hold a magazine, press buttons on my phone, or ATM machines, etc. Speech becomes slurred, or has almost no volume. Lungs feel compressed making it hard to talk. Get tired of repeating everything I say 2-3 times. Sense of balance is way off most times, and have lots of dizzy spells.

Good news (in a way), VA took full ownership of the Parkinson's under the same Agent Orange provision as my PC. They rated the PC at 100% P&T and the Parkinson's at 250% P&T. They added $600 a month to my VA disability which really surprised me.

Doing the best I can, it's all I can do. Still wish all here the best in their own personal battles. Don't seem to be many of the real old gang here(2008 or prior) anymore. Hope that's a good thing.

Purg--
As a member of the "new gang," let me assure you we LOVE hearing your updates. Please stay in touch with us whenever you're able.
My dad has Parkinson's, I know something of what you must be going through.
Best wishes,
SP.

I have not been here long, but I am happy to hear the VA has stepped up for you. I wish you all the best, in every way.

Al the best to you David.

Hi David,
Good to hear from you although I wish it was with better news. Don't know if you remember me, but I'm one of the really old members (2006). Just glad that you seam to be well taken care of by the VA. I haven't posted for many month (or is it years)......lost a bit track of time, but I still read here on occasion. Just had to say 'Hi' to an old friend in this crazy battle. You're often in my thoughts.
Wishing you well.
Your old friend,
Magaboo (Mag).

David -

As one of the "old gang" here, I am still inspired every time I read one of your posts giving us an update of your situation, and allowing us to see how courageously you have dealt with it

This is probably a hackneyed and overused image by now, but I think it still very much applies to you: Look up "GUTS" in the dictionary and you'll see a picture of Purgatory.

And as a believer in karma, I second clocknut's thought: "... those who suffer in this life will be greatly rewarded in the next." I genuinely believe that is your destiny.

Please do keep us updated, and be assured that we do care.

Happy to see the VA news! - They should be kinder to us old vets!!

Hoping you have more good days!

Bobby Mac

Good to hear from you David. You joined HW in 2008, and I was lurking that year. I joined in 2009. Not sure if it is good or bad that we are here after ten years. It is probably better that we are here rather than the alternative.

Michael

David,

I check every couple of weeks to see if you've posted, but otherwise am no longer a member here for a variety of reasons. (And am no longer using my old account, Lynnwood.) I miss the 'old crew' from the Lupus forum, never knew that many from this forum (but of course wish you all the best.)

I was so hoping things would be getting easier for you, but it sounds like that is not the case. Really glad you still have a few good days mixed in.

Often when I would rather stay in bed and be depressed, I think of Barb, and you, and many other Lupus friends I've lost - and get out of bed and do something in your honor.

Gentle hugs, my friend.
Lynnwood

Post Edited (GreenBeans) : 8/15/2018 5:00:32 PM (GMT-6)

Thanks for the update. I really miss you not being around as much, but I certainly understand.

Paul

wanted to thank each one of you that took the time to reply, wish I had the time/ability to reply back to each of you.

magaboo - so glad to "see" you are still around, always enjoyed your friendship over the years. you too, tud, definitely part of the old gang.

and Lynwood - glad you are still about. still feel sad about dear barb after all this time, she was truly a saint to many, she was to me, we understood deeply about each other's pain and suffering.

all for now, off to a new VA doctor in the morning

Hello David,

So very nice to hear from you! Glad the VA is treating you better!! Keeping you In my thoughts and prayers.

Take care and again, so glad to hear from you.

Dave, now in Olive Branch, MS

David,
Good to here from you. Always look forward to your posts....hoping there will be good news, a miracle or something positive for you. If it helps, just know I am one of many who wish you good things.
Jim