#parkinsonsplus — Public Fediverse posts
Live and recent posts from across the Fediverse tagged #parkinsonsplus, aggregated by home.social.
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I just read about Democratic Rep Wexton being diagnosed with #ParkinsonsPlus, progressive supranuclear palsy.
She's only 56. I, too, have Parkinson's Plus, Multiple System Atrophy and a few years younger than her.
Parkinson's Plus Syndromes are affecting so many GenX in numbers like none other, once rare–becoming more commonplace.
We must make headway before they are even more widespread.
:wikipedia: More about Parkinson's on Steroids
https://en.wikipedia.org/wiki/Parkinson-plus_syndrome -
@jwcph While agree that their supporters might not think this, the framers of this plan and many of the other House GOP members that back it, are of the Ayn Rand persuasions... the weak either live or don't.
Also, by making disabled people wait 5 years, they get sicker and require more care by then. There's no net gain for Medicare, just 3 additional years of suffering.
I lost everything waiting the two-years, got sicker & became more dependent due to my #ParkinsonsPlus #MultipleSystemAtrophy
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Follow @penny's and my #3Sisters #garden at @3SistersEnglishGarden account.
We toot post our progress.
We are trying different methods of gardening so I can physically help despite my #ParkinsonsPlus #mobility, #AutonomicDysfunction and other issues that have hindered my gardening in the most recent years.
Latest post:
https://oldfriends.live/@3SistersEnglishGarden/110546436130859491 -
Follow @penny's and my #3Sisters #garden at @3SistersEnglishGarden account.
We toot post our progress.
We are trying different methods of gardening so I can physically help despite my #ParkinsonsPlus #mobility, #AutonomicDysfunction and other issues that have hindered my gardening in the most recent years.
Latest post:
https://oldfriends.live/@3SistersEnglishGarden/110546436130859491 -
Follow @penny's and my #3Sisters #garden at @3SistersEnglishGarden account.
We toot post our progress.
We are trying different methods of gardening so I can physically help despite my #ParkinsonsPlus #mobility, #AutonomicDysfunction and other issues that have hindered my gardening in the most recent years.
Latest post:
https://oldfriends.live/@3SistersEnglishGarden/110546436130859491 -
Follow @penny's and my #3Sisters #garden at @3SistersEnglishGarden account.
We toot post our progress.
We are trying different methods of gardening so I can physically help despite my #ParkinsonsPlus #mobility, #AutonomicDysfunction and other issues that have hindered my gardening in the most recent years.
Latest post:
https://oldfriends.live/@3SistersEnglishGarden/110546436130859491 -
Follow @penny's and my #3Sisters #garden at @3SistersEnglishGarden account.
We toot post our progress.
We are trying different methods of gardening so I can physically help despite my #ParkinsonsPlus #mobility, #AutonomicDysfunction and other issues that have hindered my gardening in the most recent years.
Latest post:
https://oldfriends.live/@3SistersEnglishGarden/110546436130859491 -
I'm sooo sleepy. My sleep schedule is messed up right now as we had to adjust my meds to deal with summer issues with my #ParkinsonsPlus. #Parkinsons
I am sleeping like a newborn right now
It's been neat spending time on my Mastodon timeline at hours different than.my normal times online with the timeline being in chronological order
Still, I have had several mutuals reach out to make sure I was ok as my absence was odd during my normal timeline time
I go through this in winter, too
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I never had a problem with #allergies. I even once grew poison ivy inside by accident because I thought it was a beautiful vining plant. It almost killed my wife of 34 years, then girlfriend, when she had a reaction to the vine that was growing in my kitchen during the date where I cooked for her the first time.
As my #ParkinsonsPlus #AutonomicDysfunction gets worse, I've developed severe allergies to #pollen and so many other things. My brain just can't mitigate the stimuli.
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CW: My health and Autonomic dysfunction
We're acclimating my #ParkinsonsPlus from #winter to #summer, & it takes a toll on me.
Without going into too much detail, but I'm always open to #AMA, my #autonomic system, the things your body does on its own, is shot.
Season changes means adapting to new stimuli, like heat, allergens, etc.
Reactions to stimuli includes passing out, dangerous blood pressures, heart issues, etc.
We're slowly introducing my body back to the new season, adjusting meds, etc
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Thanks. I need to keep all the healthy gray matter I have since I have a form of #Parkinsons #ParkinsonsPlus ( #MultipleSystemAtrophy )
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I feel healthier since my #TwitterMigration to #Mastodon.
Not in an elitist way but the topics are so broad, and not focused on one evil subject. We still get that in but then you have the pure, refreshing content.
You get into disagreements and discussions, but they usually end with a follow or at least ends without battle scars and wounds.
My skills get tested due to my #ParkinsonsPlus on a regular basis.
#Twitter was physically & cognitively injuring me.
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The 50 degree F weather swing has my #ParkinsonsPlus #MultipleSystemAtrophy muscles playing havoc on me
I've had to take "bolus" doses of my Baclofen via my spinal pump &my muscles are Loosey-Goosey, like jelly
Had a bad one around the collarbone muscles. The neck ones scare me. Before the spinal pump with continuous Baclofen, I got broken bones from muscle spasms
Luckily, I have a bubble butt so as I "fall" forward, it plops me back up, like one of those toy punching clowns #MedMastodon
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Little Bit, my #CatsOfMastodon, saved my life today
I was napping in my lift chair on the other side of the house when he relentlessly woke me up. Penny, my wife, was gone to store and I was by myself
There was an electrical fire with a fan.
I am not too mobile due to my #Parkinsons #ParkinsonsPlus. For their entire lives, my two #cats have lived in a homebound human's house. Not sure if their behavior is different due to that, but they hoover over me 24/7
He won't leave my side tonight. ❤️
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My #Parkinsons #ParkinsonsPlus is rough on desktop computer mice. I think I am going to have to setup 'subscribe and save' for the mouse and get a new one every couple months.
Need to figure out something.
Serious #GamersOfMastodon. I figure you are hard on computer mice. Send me links and suggestions for an ''industrial strength' computer mouse that will take abuse, please.
#gaming #Gamers #gamers #videoGame #videoGames #GamingCommunity.
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🎶 Amandine By Morning
#SongsOrMoviesAboutCake
of Romania. Amadine is a chocolate layered cake filled with chocolate, caramel &fondant creamOff topic, we've had 513 unique players playing at least one of our 9 o'clock #HashtagGames over the past 7 days
Thank you, everyone. To see our past games, go to our profile & click on Media
Special thanks to my wife @penny who helps me out on the evenings when my #Parkinsons #ParkinsonsPlus takes it toll on me. Typing, liking, boosting, etc.
~ @paul
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Jake was my #ToyPoodle. He lived 16 years. We are approaching the second year of his passing over the #RainbowBridge
Miss him every day. I was privileged to have such a best friend as Jake
I made a #tribute. My piano skills are gone, I'm extra stiff with my hands and fingers #ParkinsonsPlus #DogsOfMastodon❤️
🎶 What'll I do
When you are far away
And I am blue🎶 What'll I do with just a photograph
To tell my troubles to?
When I'm alone
With only dreams of you
That won't come true
What'll I do? -
I have #ParkinsonsPlus, #MultipleSystemAtrophy ( #MSA ) with severe autonomic dysfunction
I understand a lot of doctors treating #LongCovid don't understand #dysautonomia's, esp POTS
Speaking as a long-time sufferer, for #POTS they really should look at using #Pyridostigmine (brand name #Mestinon
It has been the best relief I've received in the past decade
The quality of my life improved after I started taking Mestinon
Significantly decreased my syncope and pre-syncope. #MedMastodon
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So excited about #FlipBoard's #Mastodon integration. Can't wait for it to come to #android.
FlipBoard is one of the news reading apps that I can use flawlessly with my #Parkinsons #ParkinsonsPlus
I'm so excited, can't wait!
🔗 'Connect Your Mastodon Account to Flipboard and Join a Federated Future' via @Flipboard By Mia Quagliarello
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They say there is a silver lining in nearly every bad thing if you look beyond your grief, hurt, fear & bias. That tragedy can bring the best of human spirit
Those of us with pre-covid #Dysautonomia see that happening with #COVID19
An enormous amount of research is finally happening because of #LongCovid
Many of us paved the way to the early #diagnostics & #treatments that new sufferers are getting, but long #covid may be our healing grace
It gives #hope #ParkinsonsPlus #MSA #neurology #Med
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#Sissy assumed her nightly position & purring so loud #CatsOfMastodon
Such a joy & relaxer. It does something for my #health to have such as great nurse like Sissy
This is a Two-fer hashtag toot
For #MedMastodon, the home pharmacy in background is to keep my #autonomic system in check. Nothing major pharmaceutical wise, just things that make you poo and pee, blood pressure medications & meds to keep other automatic things my body doesn't do now working #ParkinsonsPlus #MultipleSystemAtrophy
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10, 15 years ago, I could have replaced my roof for the cost of materials and hired day laborers or buddy's, beer & BBQ
Now #Parkinsons #ParkinsonsPlus deprives me of that and it's going to cost dearly. Another hidden #Disability expense not taken into consideration
Over time, we've been replacing the roof as money is saved, esp the flat roof
Now we must roof the last of it, the largest
If you can spare $2.00. :paypal: https://www.paypal.com/donate/?hosted_button_id=79LUUNSB26RV4
About Me :chambers: https://Chambers.pw
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Got a text reminder for a doctor's appointment for one of my #ParkinsonsPlus specialists.
This #doctor is about as personable as his appointment confirmation text reminder.
But they get the job done. I guess that is all that matters.
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Part 2/ #Sissy sitting on my shoulder is kind of our thing.
It doesn't matter where I sit when I first get up. In the office or in the living room, she plops on my shoulder.
On days where I have to stay in bed because of my #ParkinsonsPlus, she climbs up on the elevated head of my bed and slides down into position when I first wake up.
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For 10 years, I've consumed nothing but feeding tube formula through a feeding tube. Can't swallow food or liquids.
Turns out, the calories in my "complete, balanced nutrition with fiber" prescription food comes from corn syrup, canola and corn oil. Junk food levels.
I now have to add a diabetes medication because my glucose level and A1C is above normal.
#FeedingTube #Health #Healthcare #Medication #Diet #Nutrition #parkinsons #MSA #ParkinsonsPlus
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#PhysicalTherapy and #OccupationalTherapy Are on the Medicare Chopping Block.
—2023's 4.5% cuts, (9% in cuts by 2024) could be devastating to patient care if Congress doesn't take action
We're already time and length limited, even if we need more. This could be devastating for me as my #ParkinsonsPlus progresses.
#Medicare #Healthcare #Aging #disability #PatientCare #Congress #Opinion
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"Playing" piano is a part of my #brain rewiring and my home #ParkinsonsPlus #OccupationalTherapy routine.
The mental aspects along with the finger digiting, anticipation, planning ahead where the hands go next, all on the fly, etc.