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

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@hopeful33250

Hello @chrisj2491 @denie57 @johnjames @trouble4343 @ggopher @tntredhead @aperob @caryp43 @burgle and @macbeth. Well we finally have our own group! I’m excited to learn more about you and have some more topics for discussion. Let us know how you are doing and what has helped (or hindered) you in your daily life with Parkinson’s. As we know, all of us are stronger together!

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Replies to "Hello @chrisj2491 @denie57 @johnjames @trouble4343 @ggopher @tntredhead @aperob @caryp43 @burgle and @Macbeth. Well we finally have..."

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

@ggopher Hi Steve, it is good to hear from you. Thanks for the travel update, sounds like a lovely trip – I’m sorry to hear of the upper respiratory problem, though. I’m glad that you are making some progress on your bucket list.

Wow, I’m very impressed with your walking/exercise routine, that is great. Exercise helps with balance, range of motion and also helps stave off depression and anxiety. I’m also glad to hear that the Azliect is working well for you without any undue complications. From what you have written it sounds as if you take it in addition to the Sinemet? Glad to know that you are still meeting with a support group. That really makes a difference, doesn’t it? It helps keep us connected with the struggles and victories of others.

I appreciate your letting us all know about the sealing envelopes for the pill bottles, sounds like a good thing to have (especially when traveling).

Thanks again for checking in with us. When I don’t hear from our members, I get concerned. Best wishes to you and your wife, Teresa

Yes, the Azilect is an addition. There is some thought it may slow the progression. Worth a try.

Steve  

Hi Teresa- Not sure of the question- But I live close to that area. JJAMES

@johnjames Was this regarding finding a support group in the Phoenix area? Teresa

Hi, @ggopher — wondering how things are going with the Parkinson's, and also how that bucket list of yours is coming along?

One day closer to a cure every day.  Honestly, at this point my back causes me more issues. And a sick cat.

Due to my aversion to flying (several incidents in Nam including being shot down and I wasn’t even a pilot) we took a cruise ship to Hawaii.

Five days on the water going over, 5 days touring the islands and 5 days back. Guess which 5 days were rainy and cold? Yep. Had fun anyway. Met some wonderful Brits and we’ll be visiting them at their home next year. Spending a week with my best friend

and his wife on a Caribbean cruise in the fall. Doin’ what I can while I can.

Saw my neurologist a week ago. No increase in Sinemet (1.5 tabs 5x) or Azilect but a few months ago he added a half anti-anxiety pill 2x as needed and it helps a lot. I’d been having some issues with rapid shallow breathing with mental or physical effort.

Can’t imagine why I’d be anxious about anything. I’ve played with timing and it doesn’t appear to cause any issues so I consider life to be Golden right now. Oh, came up a little anemic so added a vitamin with iron timed between Sinemets. Started a probiotic

a few months ago and rarely need Miralax now. 

Now I have no more secrets…. Doing great living on the sunny side of the lake.

Steve  

Hi, @ggopher — a cruise to Hawaii sounds marvelous, the weather notwithstanding.

Glad the anti-anxiety pill is helping.

I wanted to point you to these other discussions on Connect about Parkinson's and mood, if you've not seen them before? If not, these might be of interest to you and places where you'd also like to join in:

https://mayocl.in/2HpAKlq
https://mayocl.in/2JjSjzI

I got a “page not found” on both and tried manually entering them on my browser with the same result.

Steve  

Hi, @ggopher — not sure why that might be, but no matter. Here are the full links. Hoping this helps:
https://connect.mayoclinic.org/discussion/moods-and-parkinsons-disease/
https://connect.mayoclinic.org/discussion/parkinsons-and-moods/

I’m already part of the Moods connection though it isn’t very active.

Steve  

Pull Test
Roys Pull Test 08/14/2018
First result is typical when one has Parkinson's. Second pull after foot is positioned for better recovery and balance. I was first diagnosed with Parkinson's in the year 2012. I credit my good condition to Doc. Costantini's high dose thiamine hcl advice.
(continue)
B1 Thiamine HCL therapy reference / stop progression, suppress motor and non-motor symptoms:
(Thiamine HCL is oral substitute to IM injection B1) 2 x day (morning 2g and at lunch 2g)
Doctor Costantini strategy that I find helpful "thiamin hcl stops the progression forever…".
I have gone from slow motion to normal motor action since joining the growing number of PwP that have started B1 regimen/protocol.

  Request Appointment