Doing it while you can : There's a posh... - Cure Parkinson's

Cure Parkinson's

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Doing it while you can

WinnieThePoo profile image

There's a posh Latin phrase for it, but whatever you call it, for me, it's the most important response to PD.

So, I may need to up my meds, because for the first time ever Sue got a clear 5 point lead at swimming pool football (as much due to some spectacular goalkeeping as my slightly timid angles)

And I have now crashed, and am awaiting parts for all 3 of my model helicopters, the blade nano, blade 450 and T-Rex 600. I need to spend more time on the stimulator (as my German instructor called it) since its 6 years since I last flew them, and the fine motor control needed to fly well is a challenge with the unmentionable ailment. Minimum target is to fly controlled figures of 8 (I think I have to accept I'm not going to fly 3d stunts.)

Wednesday I'm taking the e-bike out on a boys social cycle day (aka bar crawl) and Saturday, after an open day at the tennis club, sue and I are off with the bikes for 2 weeks in Soustons, on the Atlantic Coast. Hoping to get in some catamaran sailing while we're there. And belly surfing (not going to be standing up)

And karaoke night - maybe pluck up courage to do a duet with Mrs WTP (bit intimidating - she's a professional)

While I can.

I'll catalog my collections another day.

Fish of the day! (Carpe diem)

28 Replies

Carpe Diem!

Carpe Diem! My new mantra thanks toWTP!

And, Golden Years Now! Is what I often tell me husband especially when trying to justify purchases. I’m only 46 but there has to be an upside to this so these are now my Golden Years!

I’ve opted to “retire” at 46 and am homeschooling our children and darn it, going to make the best of this!

Carpe Diem!

Golden Years Now!

Wonderful WtP! Seize the day😊 What a lovely up beat post thank you!

How completely wonderful! Sieze the day !

Winnie the Poo, I carpeed the dang diem too! I retired about 11 years ago a bit early and I traveled all over the world after I was diagnosed. My spouse and I did things like swimming in the Ligurian Sea in Italy, went to Bhutan and Nepal and took a flight over the Himalayas, met monks and toured temples, went to early round play at Wimbledon, and stayed in a hotel overlooking the Eiffel Tower. Also went on an African safari tour and saw all the animals, more than I can name. Some memories are kinda ironic, like falling flat out going up two little steps in the Vatican (curse you, left foot shuffling!) and also falling when walking quickly to catch a plane in the Vancouver airport, which brings a LOT of unwanted attention. I took a tour to China before COVID with my best friend but had altitude sickness in Tibet - a nice hotel, but still…Absolutely no regrets. “As much as I can, as fast as I can” was my mantra. I can honestly say I can’t think of anything left undone, and I’m very happy despite the PD march forward of various symptoms and issues. Because my spouse and I decided to use our $$ (and were blessed to have the resources) for experiences instead of new cars or a new house, and have no kids, we retired to a very busy ten years after not traveling anywhere or even taking more than a week’s vacation at a time during 35 years of work.

11 years in, now that I have a lot of pain due to muscle spasms, fatigue, painful feet with rigid toes, an increasing tremor now moving on to my right hand, trouble forming words and speaking up, truly stellar constipation to attend to every day, and crappy sleep with REM behavioral disorder, I’m not going very far from home, lol. Grateful beyond words for my precious life so far. Do it now. Don’t put anything off!

Thank you and congratulations on doing it while you could.After today's news that applies every day at every stage.

I was just reading about the tetraplegic French guy who composed the music for the closing ceremony of the paralympics using eye movement.

connexionfrance.com/French-...

Great timing Poo💪As I progress more quickly 14 years in I've been looking for something new to give me direction and lead me in battle against the strengthening pd monster and you've just given me that rallying cry, thank you.

Also reminded me of a really good movie and a great talent who is missed.

Eric

youtu.be/vi0Lbjs5ECI

21-17 to team PD this evening. Mrs WTP asked for a dope test and I had to confess to 2 macuna and a citicoline. She has referred the matter to the Olympic committee 🙄

WTP,

Everything is about CHARACTER! After flying all over the world for 54 years, my husband decided that he is afraid to fly! If he had a choice, he would never get out of the house. And I want a "normal life" even with hubby's PD, diagnosed 4 years ago. No motivation/encouragement can change his feelings. I envy you. :(

kevowpd profile image
kevowpd in reply to Despe

What prescription medication has your husband trialled to treat his apathy and/or anxiety?

Despe profile image
Despe in reply to kevowpd

Irrelevant. It's all a matter of personality.

kevowpd profile image
kevowpd in reply to Despe

🙄

You just said yourself that your HWP jet-setted for 54 years and now he doesn't want to, since he developed PD. It's pretty obviously the PD.

In other words, your husband has inadequately treated PD and you moan about how you want your old life back. My goodness.

ParlePark profile image
ParlePark in reply to kevowpd

I understand Despe’s perspective and her husband’s as well. Even when our loved ones are so very considerate sometimes it is hard for them to understand personality changes.

My doc recommended Wellbutrin 100 mg sr and it has helped considerably. After 3 months no side effects. Anxiety greatly reduced. A smoother ride.

kevowpd profile image
kevowpd in reply to ParlePark

Surely you just made my point for me. I.e that some (but not always all) of the non motor symptoms can be effectively treated, for a meaningful amount of time, with appropriate prescription medications.

WinnieThePoo profile image
WinnieThePoo in reply to Despe

I think Kevowpd has a point. My father, and Sue's Dad both had PD at similar times. Dad was diagnosed and treated, conventionally earlier and remained playful and engaged. Sue's Dad hid his PD and started treatment later (and probably at an inadequate level) and was like your husband.

It wasn't as black & white as that, and I was often frustrated with the care Dad received - and they were fundamentally different people, but broadly that was the pattern

You have tried so hard to find "the cure" and to "beat Parkinsons" on behalf of your hubby, but tied to a philosophy of hostility to conventional medicine, and faith in alternative health care which manifestly isn't delivering. Maybe you owe it to yourself, to get your life back, and to your husband who has to live with the condition, to at least try more conventional therapy, and see whether it helps.

Despe profile image
Despe in reply to WinnieThePoo

If conventional therapy would/could produce a "cure," we would have more faith in it. A little of it, he does take, however, I still believe it's a PERSONALITY issue.

Hikoi profile image
Hikoi in reply to Despe

Your poor husband being blamed (its his personality even though it wasn't his personality for 56 years) for his PD induced apathy.

Despe profile image
Despe in reply to Hikoi

He was always introvert even before PD. Do you know him, Hikoi? :) :)

Hikoi profile image
Hikoi in reply to Despe

If it is a personality issue it will only be resolved by your husband changing his personality.

ParlePark profile image
ParlePark in reply to Despe

My wife, at times, has a similar perspective as you. Sometimes, not always, we (pwp) have extended periods of time where our attitudes, perspective and actions are contrary to our past. It is hard to imagine after married for forty years, but PD can be emotionally debilitating. After a while , at times hard to fight and personality changes occur.

The one thing that as helped me, her, us, is not only trying different medications and supplements (Wellbutrin 🤙)but by changing our experiences, locations, travel, etc. has helped immensely. Carpe Diem, so true.

Despe profile image
Despe in reply to ParlePark

Thanks for sharing your personal experience. He wants no travel, no changes, no new experiences. Every PwP is unique. . .

ParlePark profile image
ParlePark in reply to Despe

Yes, you are correct we are all unique. But all the “no’s” can change. My wife has learned quite a bit more what I and others (pwp) emotionally go thru. She has been fantastic and not accepted my “no’s”! She has changed her strategies and knows when and how to pick her battles. Things are much better now for me, her, for us.

If you give up it’s easier for him. I’m sure you are exceptionally dedicated to your marriage. It’s really hard to go through the changes for both of you/us. We sought counseling as well and although we weren’t impressed by the therapist, we were able to see what needed to be done for our happiness. There’s many ways to skin a cat. Carpe Diem!!

Despe profile image
Despe in reply to ParlePark

Thank you! Were you diagnosed in April 2018?

ParlePark profile image
ParlePark in reply to Despe

Jan 2017. Motor symptoms approx 6 mos prior.

Despe profile image
Despe in reply to ParlePark

Thank you. Still a newbie. :)

I'm jealous. Good for you.

Just been to the tennis club open day and on court for the first time in 20 months. It wasn't pretty but it was good to be back.

Albert Einstein : “Insanity is doing the same thing over and over again and expecting different results.”

I really need to remind myself of this before I engage in discussions with some people