HeatherTerminal illness
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#multiplesystematrophy
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Heather<p>Turns out Dad had got tangled up in Mum's cushion mountain as he emptied the commode, getting piss over his shoes and the carpet. Mum had for reasons best known to herself moved aside the plastic sheet that sits under the commode. Oh well, that's progressed the plans to get vinyl flooring in there <a href="https://mastodon.scot/tags/silverlining" class="mention hashtag" rel="nofollow noopener" target="_blank">#<span>silverlining</span></a></p><p>I'm taking Dad to the GP later as his hips are agony and he thinks his <a href="https://mastodon.scot/tags/PMR" class="mention hashtag" rel="nofollow noopener" target="_blank">#<span>PMR</span></a> might be returning. Mum wants to die. Isn't this fun boys and girls?</p><p><a href="https://mastodon.scot/tags/multiplesystematrophy" class="mention hashtag" rel="nofollow noopener" target="_blank">#<span>multiplesystematrophy</span></a></p>
Rhyothemishashtag dump
Louise<p>Evening all. I am popping by to see how you all are. </p><p>I’m plodding on, my mum is somehow still hanging in there (now unable to carry out any voluntary movements, fully bed bound, hoisted, and covertly medicated) and it is absolutely grim. Such a cruel disease. <a href="https://mastodon.online/tags/multiplesystematrophy" class="mention hashtag" rel="nofollow noopener" target="_blank">#<span>multiplesystematrophy</span></a> <a href="https://mastodon.online/tags/dementiawithlewybody" class="mention hashtag" rel="nofollow noopener" target="_blank">#<span>dementiawithlewybody</span></a> <a href="https://mastodon.online/tags/endoflife" class="mention hashtag" rel="nofollow noopener" target="_blank">#<span>endoflife</span></a> <a href="https://mastodon.online/tags/terminaldiagnosis" class="mention hashtag" rel="nofollow noopener" target="_blank">#<span>terminaldiagnosis</span></a></p>
Rhyothemis<p><span class="h-card"><a href="https://mastodon.social/@awaisaftab" class="u-url mention" rel="nofollow noopener" target="_blank">@<span>awaisaftab</span></a></span> </p><p>Very interesting - thanks for posting.</p><p>A bit OT, but would like to mention that Li is toxic at typical doses in ppl w/ multiple system atrophy.</p><p>So far I've not come across an explanation, but study of Li toxicity in MSA might lead to a better understanding of disease mechanisms. I suspect there might be a connection with glycine & heme.</p><p><a href="https://doi.org/10.1007/s00415-012-6655-7" rel="nofollow noopener" target="_blank"><span class="invisible">https://</span><span class="ellipsis">doi.org/10.1007/s00415-012-665</span><span class="invisible">5-7</span></a><br><a href="https://doi.org/10.1177/1049909111434633" rel="nofollow noopener" target="_blank"><span class="invisible">https://</span><span class="ellipsis">doi.org/10.1177/10499091114346</span><span class="invisible">33</span></a></p><p><a href="https://zeroes.ca/tags/MultipleSystemAtrophy" class="mention hashtag" rel="nofollow noopener" target="_blank">#<span>MultipleSystemAtrophy</span></a> <a href="https://zeroes.ca/tags/lithium" class="mention hashtag" rel="nofollow noopener" target="_blank">#<span>lithium</span></a></p>
Paul Chambers🚧<p><span class="h-card"><a href="https://norrebro.space/@jwcph" class="u-url mention" rel="nofollow noopener" target="_blank">@<span>jwcph</span></a></span> 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.</p><p>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.</p><p>I lost everything waiting the two-years, got sicker & became more dependent due to my <a href="https://oldfriends.live/tags/ParkinsonsPlus" class="mention hashtag" rel="nofollow noopener" target="_blank">#<span>ParkinsonsPlus</span></a> <a href="https://oldfriends.live/tags/MultipleSystemAtrophy" class="mention hashtag" rel="nofollow noopener" target="_blank">#<span>MultipleSystemAtrophy</span></a></p>
Paul Chambers🚧<p><span class="h-card"><a href="https://mastodon.social/@thepoliticalcat" class="u-url mention" rel="nofollow noopener" target="_blank">@<span>thepoliticalcat</span></a></span> </p><p>Thanks. I need to keep all the healthy gray matter I have since I have a form of <a href="https://oldfriends.live/tags/Parkinsons" class="mention hashtag" rel="nofollow noopener" target="_blank">#<span>Parkinsons</span></a> <a href="https://oldfriends.live/tags/ParkinsonsPlus" class="mention hashtag" rel="nofollow noopener" target="_blank">#<span>ParkinsonsPlus</span></a> ( <a href="https://oldfriends.live/tags/MultipleSystemAtrophy" class="mention hashtag" rel="nofollow noopener" target="_blank">#<span>MultipleSystemAtrophy</span></a> )</p>
Paul Chambers🚧<p>The 50 degree F weather swing has my <a href="https://oldfriends.live/tags/ParkinsonsPlus" class="mention hashtag" rel="nofollow noopener" target="_blank">#<span>ParkinsonsPlus</span></a> <a href="https://oldfriends.live/tags/MultipleSystemAtrophy" class="mention hashtag" rel="nofollow noopener" target="_blank">#<span>MultipleSystemAtrophy</span></a> muscles playing havoc on me</p><p>I've had to take "bolus" doses of my Baclofen via my spinal pump &my muscles are Loosey-Goosey, like jelly</p><p>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</p><p>Luckily, I have a bubble butt so as I "fall" forward, it plops me back up, like one of those toy punching clowns <a href="https://oldfriends.live/tags/MedMastodon" class="mention hashtag" rel="nofollow noopener" target="_blank">#<span>MedMastodon</span></a></p>
Paul Chambers🚧<p>Re - <a href="https://oldfriends.live/tags/Introduction" class="mention hashtag" rel="nofollow noopener" target="_blank">#<span>Introduction</span></a></p><p>I'm <span class="h-card"><a href="https://oldfriends.live/@paul" class="u-url mention" rel="nofollow noopener" target="_blank">@<span>paul</span></a></span>. On the fowl site I was known as <a href="https://oldfriends.live/tags/FeedingTubePaul" class="mention hashtag" rel="nofollow noopener" target="_blank">#<span>FeedingTubePaul</span></a> because I first started tweeting feeding tube awareness videos after getting mine on April 16, 2012, 11 years ago.</p><p>My social life & purpose evolved so here I am just Paul & <span class="h-card"><a href="https://oldfriends.live/@hashtaggames" class="u-url mention" rel="nofollow noopener" target="_blank">@<span>hashtaggames</span></a></span> </p><p>My hashtags are <a href="https://oldfriends.live/tags/Parkinsons" class="mention hashtag" rel="nofollow noopener" target="_blank">#<span>Parkinsons</span></a> Plus-<a href="https://oldfriends.live/tags/MSA" class="mention hashtag" rel="nofollow noopener" target="_blank">#<span>MSA</span></a> <a href="https://oldfriends.live/tags/MultipleSystemAtrophy" class="mention hashtag" rel="nofollow noopener" target="_blank">#<span>MultipleSystemAtrophy</span></a> <a href="https://oldfriends.live/tags/Disability" class="mention hashtag" rel="nofollow noopener" target="_blank">#<span>Disability</span></a> <a href="https://oldfriends.live/tags/HashtagGames" class="mention hashtag" rel="nofollow noopener" target="_blank">#<span>HashtagGames</span></a> <a href="https://oldfriends.live/tags/Jokester" class="mention hashtag" rel="nofollow noopener" target="_blank">#<span>Jokester</span></a> <a href="https://oldfriends.live/tags/Healthcare" class="mention hashtag" rel="nofollow noopener" target="_blank">#<span>Healthcare</span></a>, <a href="https://oldfriends.live/tags/USpol" class="mention hashtag" rel="nofollow noopener" target="_blank">#<span>USpol</span></a>, <a href="https://oldfriends.live/tags/climate" class="mention hashtag" rel="nofollow noopener" target="_blank">#<span>climate</span></a>, <a href="https://oldfriends.live/tags/music" class="mention hashtag" rel="nofollow noopener" target="_blank">#<span>music</span></a>, <a href="https://oldfriends.live/tags/literature" class="mention hashtag" rel="nofollow noopener" target="_blank">#<span>literature</span></a>, <a href="https://oldfriends.live/tags/movies" class="mention hashtag" rel="nofollow noopener" target="_blank">#<span>movies</span></a>, <a href="https://oldfriends.live/tags/TV" class="mention hashtag" rel="nofollow noopener" target="_blank">#<span>TV</span></a>, <a href="https://oldfriends.live/tags/fedi22" class="mention hashtag" rel="nofollow noopener" target="_blank">#<span>fedi22</span></a> <a href="https://oldfriends.live/tags/Ohio" class="mention hashtag" rel="nofollow noopener" target="_blank">#<span>Ohio</span></a> <a href="https://oldfriends.live/tags/US" class="mention hashtag" rel="nofollow noopener" target="_blank">#<span>US</span></a> <a href="https://oldfriends.live/tags/Veteran" class="mention hashtag" rel="nofollow noopener" target="_blank">#<span>Veteran</span></a> <a href="https://oldfriends.live/tags/Banjo" class="mention hashtag" rel="nofollow noopener" target="_blank">#<span>Banjo</span></a> <a href="https://oldfriends.live/tags/CatsOfMastodon" class="mention hashtag" rel="nofollow noopener" target="_blank">#<span>CatsOfMastodon</span></a> among others.</p>
Nick Byrd, Ph.D.<p>“rapid eye movement sleep behavior disorder (RBD)... can be associated with neurodegenerative disorders [like] Parkinson’s disease, Lewy body dementia and multiple system atrophy... <a href="https://nerdculture.de/tags/alcohol" class="mention hashtag" rel="nofollow noopener" target="_blank">#<span>alcohol</span></a> ...can worsen RBD and its effects”</p><p>–Lindsay Modglin (reviewed by Seema Khosla, M.D., F.C.C.P., F.A.A.S.M)</p><p><a href="https://www.forbes.com/health/body/how-does-alcohol-impact-sleep/" rel="nofollow noopener" target="_blank"><span class="invisible">https://www.</span><span class="ellipsis">forbes.com/health/body/how-doe</span><span class="invisible">s-alcohol-impact-sleep/</span></a></p><p><a href="https://nerdculture.de/tags/alcohol" class="mention hashtag" rel="nofollow noopener" target="_blank">#<span>alcohol</span></a> <a href="https://nerdculture.de/tags/sleepApnea" class="mention hashtag" rel="nofollow noopener" target="_blank">#<span>sleepApnea</span></a> <a href="https://nerdculture.de/tags/REMsleepBehaviorDisorder" class="mention hashtag" rel="nofollow noopener" target="_blank">#<span>REMsleepBehaviorDisorder</span></a> <a href="https://nerdculture.de/tags/REMsleepDisturbnce" class="mention hashtag" rel="nofollow noopener" target="_blank">#<span>REMsleepDisturbnce</span></a> <a href="https://nerdculture.de/tags/Dementia" class="mention hashtag" rel="nofollow noopener" target="_blank">#<span>Dementia</span></a> <a href="https://nerdculture.de/tags/Parkinsons" class="mention hashtag" rel="nofollow noopener" target="_blank">#<span>Parkinsons</span></a> <a href="https://nerdculture.de/tags/Neurodegenerative" class="mention hashtag" rel="nofollow noopener" target="_blank">#<span>Neurodegenerative</span></a> <a href="https://nerdculture.de/tags/Disorders" class="mention hashtag" rel="nofollow noopener" target="_blank">#<span>Disorders</span></a> <a href="https://nerdculture.de/tags/MultipleSystemAtrophy" class="mention hashtag" rel="nofollow noopener" target="_blank">#<span>MultipleSystemAtrophy</span></a> <a href="https://nerdculture.de/tags/Health" class="mention hashtag" rel="nofollow noopener" target="_blank">#<span>Health</span></a> <a href="https://nerdculture.de/tags/Wellbeing" class="mention hashtag" rel="nofollow noopener" target="_blank">#<span>Wellbeing</span></a> <a href="https://nerdculture.de/tags/longevity" class="mention hashtag" rel="nofollow noopener" target="_blank">#<span>longevity</span></a></p>
Paul Chambers🚧<p>I have <a href="https://oldfriends.live/tags/ParkinsonsPlus" class="mention hashtag" rel="nofollow noopener" target="_blank">#<span>ParkinsonsPlus</span></a>, <a href="https://oldfriends.live/tags/MultipleSystemAtrophy" class="mention hashtag" rel="nofollow noopener" target="_blank">#<span>MultipleSystemAtrophy</span></a> ( <a href="https://oldfriends.live/tags/MSA" class="mention hashtag" rel="nofollow noopener" target="_blank">#<span>MSA</span></a> ) with severe autonomic dysfunction</p><p>I understand a lot of doctors treating <a href="https://oldfriends.live/tags/LongCovid" class="mention hashtag" rel="nofollow noopener" target="_blank">#<span>LongCovid</span></a> don't understand <a href="https://oldfriends.live/tags/dysautonomia" class="mention hashtag" rel="nofollow noopener" target="_blank">#<span>dysautonomia</span></a>'s, esp POTS</p><p>Speaking as a long-time sufferer, for <a href="https://oldfriends.live/tags/POTS" class="mention hashtag" rel="nofollow noopener" target="_blank">#<span>POTS</span></a> they really should look at using <a href="https://oldfriends.live/tags/Pyridostigmine" class="mention hashtag" rel="nofollow noopener" target="_blank">#<span>Pyridostigmine</span></a> (brand name <a href="https://oldfriends.live/tags/Mestinon" class="mention hashtag" rel="nofollow noopener" target="_blank">#<span>Mestinon</span></a> </p><p>It has been the best relief I've received in the past decade</p><p>The quality of my life improved after I started taking Mestinon</p><p>Significantly decreased my syncope and pre-syncope. <a href="https://oldfriends.live/tags/MedMastodon" class="mention hashtag" rel="nofollow noopener" target="_blank">#<span>MedMastodon</span></a></p>
Paul Chambers🚧<p><a href="https://oldfriends.live/tags/Sissy" class="mention hashtag" rel="nofollow noopener" target="_blank">#<span>Sissy</span></a> assumed her nightly position & purring so loud <a href="https://oldfriends.live/tags/CatsOfMastodon" class="mention hashtag" rel="nofollow noopener" target="_blank">#<span>CatsOfMastodon</span></a> </p><p>Such a joy & relaxer. It does something for my <a href="https://oldfriends.live/tags/health" class="mention hashtag" rel="nofollow noopener" target="_blank">#<span>health</span></a> to have such as great nurse like Sissy</p><p>This is a Two-fer hashtag toot</p><p>For <a href="https://oldfriends.live/tags/MedMastodon" class="mention hashtag" rel="nofollow noopener" target="_blank">#<span>MedMastodon</span></a>, the home pharmacy in background is to keep my <a href="https://oldfriends.live/tags/autonomic" class="mention hashtag" rel="nofollow noopener" target="_blank">#<span>autonomic</span></a> 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 <a href="https://oldfriends.live/tags/ParkinsonsPlus" class="mention hashtag" rel="nofollow noopener" target="_blank">#<span>ParkinsonsPlus</span></a> <a href="https://oldfriends.live/tags/MultipleSystemAtrophy" class="mention hashtag" rel="nofollow noopener" target="_blank">#<span>MultipleSystemAtrophy</span></a></p>
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