Coping with MSA

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.

[Coping with MSA @CopingWithMSA]

@danceformsa:http://t.co/znasJfvf9M
@MSAawareness:http://t.co/R6PSBbHdrj
@MSAshoe: https://t.co/DdPKlNXr7u
@MSAtrust: http://t.co/bO66Bou2ua

[Coping with MSA @CopingWithMSA]

For the time being, I may seek some freelance gigs in Social Media or journalism, but recovering from this past year is top priority.

[Coping with MSA @CopingWithMSA]

Going to go on a bit of a trip as well, and hopefully be back working in a couple of months!

[Coping with MSA @CopingWithMSA]

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!

[Coping with MSA @CopingWithMSA]

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.

[Coping with MSA @CopingWithMSA]

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.

[Coping with MSA @CopingWithMSA]

Mom is doing much better! She is no longer drinking since they found a sleeping pill that actually works for her! Cold Turkey.

[Coping with MSA @CopingWithMSA]

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.

[Coping with MSA @CopingWithMSA]

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...

[Coping with MSA @CopingWithMSA]

I have bugged staff about lengthy response times. I keep being assured they'll look into it and that it will be resolved.

[Coping with MSA @CopingWithMSA]

He can no longer control his bowels, and is being checked on or changed every two hours. Though they're not always "on time".

[Coping with MSA @CopingWithMSA]

He doesn't really talk, except when he somehow whispers what he's trying to say in literal whispers. Otherwise he mumbles.

[Coping with MSA @CopingWithMSA]

Dad's health continues to decline. He is having trouble swallowing, drinking, eating...pretty much everything. He is no longer walking.

[Coping with MSA @CopingWithMSA]

It's been a while since I really tweeted from this account, so please forgive the next several tweets of updates...

[Coping with MSA @CopingWithMSA]

A Year Later... - I had the intention of posting updates to this blog about our family’s struggles with... https://t.co/CHzK1aFeSb

[Coping with MSA @CopingWithMSA]

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.

[Coping with MSA @CopingWithMSA]

Let Dad know via email (he can read it, can't respond) about our video conference with his Neurologist coming up for updated prognosis.

[Coping with MSA @CopingWithMSA]

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!

[Coping with MSA @CopingWithMSA]

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.

[Coping with MSA @CopingWithMSA]

to hopefully find a doctor willing to do it. Here's the link https://t.co/SRWlPTC6r6

[Coping with MSA @CopingWithMSA]

That also includes info on applying for an exemption. Long story short- have to talk to a lawyer and call 811...