Coping with MSA @CopingWithMSA
My name is Kevin. My Dad has Multiple System Atrophy. It's often confused w/ Parkinsons. After 40+ years, he has retired. This account helps me cope and learn. msaawareness.org Edmonton, Alberta Joined March 2015-
Tweets898
-
Followers72
-
Following23
-
Likes25
For the time being, I may seek some freelance gigs in Social Media or journalism, but recovering from this past year is top priority.
Going to go on a bit of a trip as well, and hopefully be back working in a couple of months!
We're even convinced I won't need to be a Caregiver for much longer. So now it's time to take care of myself!
She literally quit Cold Turkey, but we're keeping an eye on her to make sure. She now has more energy, and is even exercising.
She's been saying for months that she's only drinking to help her get to sleep (even though alcohol doesn't keep her asleep.
Mom is doing much better! She is no longer drinking since they found a sleeping pill that actually works for her! Cold Turkey.
through a govt program, so we don't have to pay for it, which we're very grateful for, as it would have added up to thousands.
Dad has requested an actual hospital bed. He is no longer able to rest or sleep comfortably in his Lift Chair. Physio got a bed...
I have bugged staff about lengthy response times. I keep being assured they'll look into it and that it will be resolved.
He can no longer control his bowels, and is being checked on or changed every two hours. Though they're not always "on time".
He doesn't really talk, except when he somehow whispers what he's trying to say in literal whispers. Otherwise he mumbles.
Dad's health continues to decline. He is having trouble swallowing, drinking, eating...pretty much everything. He is no longer walking.
It's been a while since I really tweeted from this account, so please forgive the next several tweets of updates...
A Year Later... - I had the intention of posting updates to this blog about our family’s struggles with... tmblr.co/ZyxCYk26C7qiU
Mom had a nearly 2 hour appt with her Dietitian yesterday. It went well, but her anxiety had bothered her ever since. Too much talking.
Let Dad know via email (he can read it, can't respond) about our video conference with his Neurologist coming up for updated prognosis.
Mom barely slept last night, and was predictably crabby as a result. She also had a rough day. Really going she gets some rest tonight!
Dad is getting worse by the week and month, and asked me during my last visit when they're "going to do it". He's almost ready.
to hopefully find a doctor willing to do it. Here's the link bit.ly/1WBBqDw
That also includes info on applying for an exemption. Long story short- have to talk to a lawyer and call 811...
UF Movement Fellowshi... @UFMDFellowship
1K Followers 714 Following Official account of the University of Florida Movement Disorders Fellowship. 🌴• PD: @CWHESSMD • Guru : @MichaelOkun • Go 🐊!!!
💕 @sukuzimoto
171 Followers 5K Following
April Pilkenton @aadmac123
156 Followers 818 Following #Wife💍 #Mom👩👩👦👦 #Doula🤱🏼#MOA&NursetoMidwives🤰#SportMom🏀🥎⚾️🏉 #Blessed
Serenity Spa & Beauty @SerenitySpaBea1
68 Followers 621 Following Luxury spa and beauty treatments in a calm, relaxing and professional environment. (Conveniently facing Earlestown train station)
Serhat Özperçin @serhatozpercin
827 Followers 2K Following Serial entrepreneur -CoFounder @clarosfarm -Ex-CoFounder @zaxe3d -- a MSA warrior @DefeatMsa
MS Digital Tools @MSDigitalTools
887 Followers 4K Following Search and explore digital tools and resources for #multiplesclerosis. A @bournemouthuni project in prototyping. Lead: Keith Pretty @Keefinger #MS. Views own.
Aisling Nolan @aisling_nolan
45 Followers 137 Following
Sergio Paulo Miranda @SergioPSMir
35 Followers 817 Following
IMPACT Parkinson’s @ImpactParkinson
593 Followers 3K Following Let’s Talk LOUD with IMPACT Parkinson's
Barry Houtris @BarryHoutris
116 Followers 525 Following Greek Cypriot and proud of it. Mad kopite.YNWA JFT96🏆🏆🏆🏆🏆🏆
Maureen Erdman @ErdmanMaureen
35 Followers 480 Following
elldina2🍃💚🍃 @elldina2
837 Followers 2K Following Love reggae music!!!!! Dislike injustice, , anti hunt, fbpe
Christian Cabrera @misticris
11 Followers 512 Following
Staff_sthlm @Staff_sthlm
92 Followers 53 Following
World MSA Day @WorldMSADay
39 Followers 186 Following With faith and believe You will overcome any worry Fear eats and doubt are a burden Hopesgive life, that's for sure
George Mailath @95Ridgeview
18 Followers 61 Following
Diane Graham @DianeEGraham
52 Followers 954 Following Mom. Lifelong journalist. Believer in science. Hopeful.
Dan Gallivan @dangsticks
15 Followers 74 Following
Jane Hey @therealjanehey
17 Followers 154 Following
CurePSPCanada @canadapsp1
14 Followers 94 Following
Mary Eĺlen Duncan @MaryElenDuncan1
6 Followers 67 Following
JC. ZUNIGA @carloszuniga966
104 Followers 882 Following
JDCPlumbing&Heating @JDC_Plumbing
52 Followers 300 Following JDC is able to offer a complete plumbing and heating service from simple repairs to whole new installations in Bridlington and surrounding Yorkshire areas.
Teach @OGTeaches
3K Followers 4K Following Supply Teacher. Walker, mum, living sustainably-ish. Background in EnvSci. Lover of chn lit and maths. Mental health sufferer. Book contributor. ND
Pam Bower @pammygb
524 Followers 882 Following Health Advocate for Multiple System Atrophy @MSAAwareness Board Member @MissionMSA https://t.co/pdbU0eCFzs
Trish Caruana @caruana_pep
144 Followers 410 Following President/CEO of the Patient Engagement Program of CurePSP. PEP's mission is to recruit and retain people with PSP for clinical trials.
MissNikkiAnn @MissNikkiAnn
834 Followers 1K Following Writer/Researcher/Lecturer living w/ Dysautonomia: Multiple System Atrophy (MSA) aka Shy-Drager; Postural Orthostatic Tachycardia Syndrome (POTS); Gastroparesis
Glenda Winkler @glendawinkler_
308 Followers 2K Following Transgender Black Female Male. I am a mother with 3 children and on my second husband. #BLM #chiraq
MSA Angel @InMemoriamMSA
386 Followers 2K Following In Caram Memoriam (Loving Memory) of All Those That Passed From Multiple System Atrophy (MSA)
Beth Foster @Foster08011973
22 Followers 141 Following
Oshibki Bozhyego @oshibkibozhyego
218 Followers 710 Following A group of friends trying to help one of our own whose life was derailed by #POTS #Dysautonomia #MSA . A brilliant man that lost so much before he turned 20.
lucky lottery racing @LlrOddss
63 Followers 406 Following
Robert Orlando @Robomantix
508 Followers 2K Following Director of Nexus Media (https://t.co/70AEyH5KU1). Innovative Films (https://t.co/W844FQuBit)
Mohammed Sharaf @jayti56
167 Followers 1K Following
Tanya Woods @cigankowoods
11 Followers 102 Following
First Page @FPage707
8 Followers 51 Following
Birgitt Schuele (She/... @SchueleLab
1K Followers 4K Following Making a difference for Parkinson's disease research. My research improves patient care by unraveling the causes of neurodegeneration. 🌈🏃🏻♀️🧑🔬
Judy Willey @Hudy68
64 Followers 151 Following Former OR nurse, mother to 3 kids, & wife. Diagnosed with YOPD at the age of 41. updated to MSA July 2014.
Anne M @eromdap
142 Followers 93 Following
DanceForMSA @danceformsa
58 Followers 250 Following #DanceForMSA DONATE, take the dance challenge within 25 hours and tag 5 friends. Dance to help Cure Multiple System Atrophy (MSA). Donate at:
Linda Effinger Quinde @effingerquinde
322 Followers 2K Following Activist/optimist. Feminist/catalyst. #Chicagoan and #UMich grad. Fighting for #abortionaccess #reparations #immigrationreform
1Weather @OneLouderApps
3.7M Followers 37K Following 1weather - trusted source of weather for 35M users
DanceForMSA @danceformsa
58 Followers 250 Following #DanceForMSA DONATE, take the dance challenge within 25 hours and tag 5 friends. Dance to help Cure Multiple System Atrophy (MSA). Donate at:
Birgitt Schuele (She/... @SchueleLab
1K Followers 4K Following Making a difference for Parkinson's disease research. My research improves patient care by unraveling the causes of neurodegeneration. 🌈🏃🏻♀️🧑🔬
Caregivers Alberta @CaregiversAB
2K Followers 1K Following Caregivers Alberta provides resources and support to Albertans caring for family and friends with challenges resulting from illness, disability or aging.
Rex Griswold CUREMSA @rexgriswoldfnd
90 Followers 230 Following The mission of the Rex Griswold Foundation is to raise awareness and funds for groundbreaking research on Multiple System Atrophy (MSA). Help Cure MSA
Tara Hilgert @tarahilgert
35 Followers 173 Following
Richard Ryan @rryan5651
36 Followers 43 Following Stay home dad, Stones fan, worked with special needs patients, loves old cars.
Pilgrims Hospice @HospiceEdmonton
674 Followers 649 Following We provide compassionate, specialized end-of-life care to enhance the quality and dignity of life for those diagnosed with a life-limiting illness.
Neil Versel @nversel
8K Followers 872 Following Experienced #healthcare & #lifesciences #journalist looking for #writing #editing work. @MSACoalition volunteer. @WUSTL grad. Ironman finisher.
eMeals @eMeals
11K Followers 2K Following eMeals makes meal planning easy, with fresh recipes, a streamlined grocery list, and smart cooking tips delivered to you each week. #emealseats
Defeat MSA Alliance @DefeatMsa
2K Followers 5K Following Defeat MSA Alliance: Multiple System Atrophy; A Public Non-Profit Charity, 501(c)(3)
Michael Brown 🌍 @MentalHealthCop
36K Followers 422 Following Policing, mental health and criminal justice | coffee loving cyclist | bass player.
Jonathan Lessin MD @jonlessin
522 Followers 1K Following Diagnosed with PD.Cardiac Anesthesiologist, Father, Husband,Yogi, Parkinson's Movement Ambassador #jonlessin #tenacityamemoir #fightingparkison #parkisondisease
michaeljfox.org @MichaelJFoxOrg
96K Followers 2K Following The Michael J. Fox Foundation is dedicated to finding better treatments and, ultimately, a cure for Parkinson’s disease. Social Info: https://t.co/jN2BqHCali
UF MovementDisorders @UFMDC
4K Followers 353 Following Caring for & researching Parkinson Disease, Dystonia, Tremor, Ataxia, Tics & more. Interdisciplinary Program at the Norman @FixelInstitute at @UFHealth
Cure MSA @CureMSA
488 Followers 413 Following U.S. 501(c)(3) non-profit dedicated to funding research to find a cure for Multiple System Atrophy http://t.co/fYxBDXkMKu
HOPE MSA @MSAhope
839 Followers 4K Following
Mission MSA @MissionMSA
2K Followers 820 Following Mission MSA serves the MSA community by offering support, education, research funding, advocacy and awareness.
MSA Trust @MSAtrust
2K Followers 700 Following The UK and Ireland's only charity supporting people affected by Multiple System Atrophy. We rely entirely on voluntary donations and fund research into MSA.
Pam Bower @pammygb
524 Followers 882 Following Health Advocate for Multiple System Atrophy @MSAAwareness Board Member @MissionMSA https://t.co/pdbU0eCFzs
MSA Awareness @MSAawareness
2K Followers 2K Following March is Multiple System Atrophy Awareness Month ... spread the word!Trends for United States
You might like
