Living with Parkinson's Disease - Meet others & come say hi

Hi Theresa

Been off the grid awhile. We decided it was time to start on our bucket list so we took a 16 day Panama Canal trip, 1 day travel and an overnight stay at each end. Also told the kids in person. They handled it pretty well, son stoic and daughter just a little weepy. I feel bad for them. Canal isn't especially special - no drama which is the point of digging it -so that ships can routinely make the transit safely. Took 4 bus and walking tours in Costa Rica and Mexico, saw some whales. I was dead tired each day and napped a lot but I did better than I would have thought. Went with my best friend and his wife and she is a nurse so she kept me from overdoing. Last day my wife and I both got flu and sinus/upper respiratory infections so that made s tough 2 day trip home - and a BIG on-board medical bill. This time of year all the kids are in school so most of the passengers move a bit slower and understand when I was tired or the boat moved and I had to move slower or hang onto something. Only problem is that everyone in bikinis was my age - 70's. Oh well didn't have to suck in my food-bump.

Lessons
Panama Canal trip probably isn't worth the cost - take a couple shorter trips
With proper planning, I can do more than I thought
If not now, when?

The Parkinson's Foundation go-bag is like a small Dopp kit and has a silver medical alert PD bracelet, laminated wallet drug interactions fold-over card, other info and ads. If I don't wear the bracelet I have it in my pocket to alert EMT's and the card lives in my wallet and I keep backup pills in the kit in case of evacuation for fire or whatever. The card can also be downloaded from their website.

By the way, Walgreens has really small sealing envelopes by the pill bottles perfect for keeping the day's pills or backup pills dry in your pocket in the rain or if you get splashed by a whale.

Walk 2 miles on the treadmill 3 times a week and spend 30 minutes or so on weight machines.
Go to monthly PD group meetings at my neurologist's hospital.
The Sinemet with caffeinated soda seems to work well when I have changes in my schedule and need to compress the pill/protein time. Or I get busy and forget.
Doctor limited me to one drink a day, no red wine and I skipped most of those. Bummer.

The Azilect doesn't seem to have any food interactions with my normal diet as had concerned me.

Steve

Hello @david59. Thanks for your post. It is good to have you as part of our group. I'm sorry to hear of the sudden change in your symptoms. This must be very difficult for you. What does your doctor say about this change in your condition? Will new meds be tried? It sounds as if you are dealing with this change as best as you can. Please meet some of the other members of our group, @chrisj2491 @denie57 @johnjames @trouble4343 @ggopher @tntredhead @aperob @caryp43 @burgle @macbeth @knightkris. These folks have proven to make the most of their life with PD and I think you will enjoy getting to know them. They may be able to offer you some perspective on how to handle these sudden changes. Keep in touch with us, we look forward to getting to know you and supporting you through these changes. Teresa

Welcome David. I'm glad you took your 20 year anniversary as an occasion to share your PD experience with the group. I'm sorry to hear about the accelerated progression however. Have you made any changes in your home to help remove obstacles or reduce the harm that may come from falling?

Just wanted to say "Hi". this month marks 20 yrs since my first symptom of PD... February 1997. Generally speaking, until last April (2016) my PD has been a problem but not what I would call a disability. but starting last April I have had an accelerated progression...freezing (if the doorbell or phone rings, I'm stuck to the floor) and near falls (have only hit the floor twice luckily). My medication drops off very quickly now and I have to plan trips to the gym or grocery store around my "window of opportunity" as I call it. Well, that's all for now. 🙂

@predictable. I'm sorry to hear of your brother's death, Martin. Yes, there are a lot of Parkinson's disorders that are not the same as "typical" Parkinson's disease, (we don't all look and act like Michael Fox, etc.). and many are difficult to diagnose. My neurologist told me that when doctors suspect Parkinson's they try a Parkinson's med and if that decreases symptoms, they make a Parkinson's diagnosis. It could be that your brother had PD with some other degenerative disease as well. We look forward to learning more of your brother's story with a Parkinson's-like disorder, as you feel comfortable sharing it with us. My sympathies to you and your sister-in-law as you grieve this loss. Teresa

@predictable Thanks, Martin. Sounds good. Teresa

Teresa, I'm interested in Parkinson's because that was the long-term diagnosis for my brother, who died a month ago. I must emphasize, however, that in his final days, neurology serious questioned whether he had Parkinson's or a similar, more widely damaging multi-system degeneration. As my sister-in-law shares information on this with me, I'll pass it along.
Martin

@macbeth, Thanks for your encouraging words to @tntreadhead! We all need encouraging, espcially when we have been ill.
@chrisj2491 @denie57 @johnjames @trouble4343 @ggopher @aperob @caryp43 @burgle @knightkris @IndianaScott

@tntredhead
Yes! Please rest, and feel better soon!

Macbeth

Thanks for checking in with us, @tntredhead. I am sorry to hear that you have been sick, sepsis is a serious matter. I hope that you will have some help when your husband returns home. I am doing well, thanks for asking. Please take care and be well. I'm copying the other members of our group so that they can see your update and wish you well. @chrisj2491 @denie57 @johnjames @trouble4343 @ggopher @aperob @caryp43 @burgle @macbeth @knightkris @IndianaScott Teresa