Phil Gattis
Forum Replies Created
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Hi, Mary Beth. I’m in the New York Catskill mountains.
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Sauna, then exercise, then C/L, in that order – for both “favorite” and “most relief”
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Mike Scott:
As to causes, there are 2 contenders. PD is presumptive for the Marine Corps Base Camp Lejeune water pollution scandal, for which I’m perfectly qualified. Also, since that exposure, I sprayed many types of paint and coatings with bad organic solvents, for which I didn’t use sufficient protection. Camp Lejeune started PD, and the other chemicals moved it right along.
Phil
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Mike Scott:
I just had my 70th birthday last Sunday. 15 months diagnosed. I exercised regularly for years, long before diagnosis. Since diagnosis, it’s become much more important for me.
Phil Gattis
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trying to unsubscribe
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Mine is similar to others’, especially David Blacker:
3 times/week mixing up:
- 20 min HIIT [high intensity interval training] cardio
- 15 min resistance: sit-ups, push-ups, therapy band
- 20 min power moves PWR!Moves
- 10 min stretches
Then I try to do a 4th time each week boxing with a heavy and a speed bag. I’m really not good at the speed bag.
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I spent ~60 days consecutive at Camp Geiger, MCB Camp Lejeune NC during the time period of what is arguably our country’s worst water pollution scandal. PD is “presumptive” for this exposure with as little as 30 nonconsecutive days, meaning that it was relatively easy to obtain VA disability benefit. In the years following that exposure, I also sprayed various coatings with organic solvents and foam with free isocyanate. All of this is bad stuff, and I didn’t protect myself as well as I should have.
My mother had PD, & it has appeared elsewhere in family trees with my last name, so there may be a genetic link.
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My wife cares for me, with loving support from our church.
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My wife and I just celebrated the first anniversary of our diagnosis of PD.
Shortly after the diagnosis, we carefully timed a tri-continental conference call [US, UK, and Australia] that covered 4 of our 5 children. The 5th got a separate phone call. They all know that our faith and marriage are strong, and they responded with thoughts of much love and promises of many prayers.
I just broke down and wept on that call – not because I felt sorry for myself, but because I could be blessed with so much love and support. Since then, we’ve kept in touch, even Zoomed a couple times. We still have only seen pix and videos of our three grandchildren, but we have hope to once travel over the many waters to visit them.
Interesting how each one who has shared on this thread has a faith background to their story. I’ve heard that the two best treatments for PD are exercise and humor. I’d like to suggest a third ahead of those two: faith, exercise, and humor.
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Hello, Steve.
I’m a person with PD. I’m blessed to have my wife as my care partner. My PD is in early stages yet, and my neurologist and my primary doctor have treated my wife as an important team member from the start. Sometimes, it’s no more than a squeeze of my hand or an arm around the shoulder. She hears my watch beeping before I do, and reminds me it’s time for my med’s. She has been with me on every appointment, and we discuss every change or sign of progression. So we’re on a good foundation for what the future brings.
With you in Spain and your mother in the UK, I really don’t know how to advise. Your mother needs a care partner by her side, and I hope it’s not too late for someone to take on that role. Is your father being a care partner for her?
And it’s really the neurologist and the doctor together that need to advise on meds and dosage.
Patience is key. PD is something that will go on changing, as you’ve already experienced, and change is liable to be hard for your mother.
I don’t want to sound judgmental, but this is really from my heart. We’re wishing you and your family all the best as you search for solutions,
Phil
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Hello, Robert.
Thanks for this essay. The only point I would add – you could call it step 1)a: If you have both capsules and pills, put them in separate piles.
I’ve found that, for the 3 or 4 pills taken together, keeping them roughly the same size helps them to go down easier. I can take a mouthful of 5 capsules without a problem, but it’s asking for trouble to take 1 capsule together with 2 or 3 pills.
Hope that makes sense.
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Are they hot?
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Yes, I’ve been acting out dreams, both pre- and post-diagnosis.
Seeking peace through prayer. We’re in it together for the long haul. I have the best caregiver in the world.
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This is becoming a scary symptom. The other night, I struck my wife, who responded, “That hurt!” & I replied, “It was meant to!” I have no memory of that exchange.
I think I’ll try the trick of sleeping on my other side. Unfortunately, that leaves the ear that hears exposed.
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I just made a radical change in my routine. I was doing HIIT, crunches, free-weights, & stretches 4 times/week, always the same routine. Now, I’m doing HIIT 3 times, punching bag routine once/week; swapping out core [crunches] with upper body free-weights routine; swapping out PWR!Moves with traditional stretches. My body is adapting to the changes, and it feels very good.
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The link didn’t work for me. However, it sounds a bit like PWR!Moves https://www.pwr4life.org/moves/, which I’ve incorporated into my exercise routine twice each week. The idea is to combat the tendency for PD patients to hunch over & shuffle with big and fast movement. Feels great so far. Whatever my exercise routine is for that day, I always feel energized afterwards.
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Like Russell, I believe in HIIT. Prior to diagnosis, I did it for years on a stationary bike. Coupled with a Fast 5/2 diet, I dropped over twenty pounds and kept it off. I recently got a GymBoss interval timer, which I feel is a very worthwhile investment of ~$30.
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Diagnosed last June, but dreams, loss of smell, slight tremors, constipation, kidney/bladder dysfunction, stooped posture & other symptoms preceded it, some by years.
I’m 69 & on more drugs now than I ever was in my life[not good!], & I’m going back for my 2nd neurologist appointment soon. I imagine we’ll talk about medications.
It’s a ride alright. Thank God for humor, & my wife, family, & church!
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I’m not near a gym offering RSB. Is there a way to participate remotely? Emailed routines? I registered with RSB, but all I get so far is requests for donations.
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Yes, it has deepened our marriage of 34 years. I’m also a member of a very supportive church-community.
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Yes. This is all I found:
https://www.globalkineticscorporation.com/the-pkg-system/
But this doesn’t tell me how to get it. Maybe it’s still only in trials. I’m new to all of this.
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How do you get one?