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Living with MSA (Multiple System Atrophy)

Keeping Safe

5/16/2020

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While this may all seem overwhelming, it doesn’t need to be. Complete some basic preparations such as having a supply of non-perishable foods, medical supplies, prescription and other medications, and other necessities.
Wash your hands and cover your cough, and ask those around you to do the same.  Practice social distancing. 

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Bright Spots

5/13/2020

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This pandemic has shown a few "silver linings":

My doctor is suddenly doing prescriptions by phone. Long been a pet peeve. I no longer have to book/pay for handibus, go in, wait for hours, hand over a note to have Rx refilled, and another note to fax Rx to pharmacy and call the handibus for return home. Deja vu?

Streets and apartment building are quieter.

Companies that have always claimed to be inaccessible by email are suddenly flooding my inbox with corporate names and addresses (email contacts). Local businesses are blossoming online, too. It is a whole new world available at the click of my mouse.  Dare I hope this on-line trend continues?

Doing well selling/downsizing with Kijiji. Covid restrictions work well-- people pay by etransfer, then pick up outside door. Has eliminated "no shows" and "looky-loos" as the item is already paid for. And I can email buyers that I can't do "try-ons and looks", as AHS does not permit garage sales.
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Things Have Changed

5/12/2020

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Well, COVID-19 certainly has changed a lot of things.

My carefully-constructed "house of cards" has been blown to hell. Years of ideas and solutions... poof!

Managing the needs of a pandemic is challenging, especially in a wheelchair with limited fine motor skills.
​Even gloves/face masks and washing hands is difficult and time-consuming. Lots of good reasons to stay home...

Items may not be available, meaning a wasted trip or more deliveries. Both are hard on a limited budget.
Handibus is on essential service. Boy, that makes staying home easy.
Gym/pool is closed which means exercising at home.
FCSS support is cancelled. Very slowly clean, change bed, do dishes. Garbage piles up.
Library is closed. TV is re-run extraordinaire. Finding new ways to entertain myself.
Social media is dire, full of experts, wanna-be stars, scams and fix-everything cures
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Getting Up from Seated...

3/11/2020

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Finding it now a problem to get up from my wheelchair... to transfer, stand, etc.... I am now working on this issue. I took note of what muscles are used or "what hurts". I also tend to pitch forward, so ensure there is a grab bar, cupboard, table, etc. in front. When I find any movement difficult, I repeat it 10 times.

Also, with the standing thing, I found moving to the shallow end of pool edge, allows me to simulate the "getting up" process. Hurts in all the right places. "Squatting" while hanging on to pool edge, repeat 10 times. Also found that "walking" while hanging on, in the shallow end is difficult. Experimenting with standing (upper body out of water, no hanging on).

​May also be useful to get out of recliner, bed, off couch...
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New! Added Blog page to existing Website

2/9/2020

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I have added a MSA blog page to website www.kathyjwhite.com
Makes more sense than having 2 separate websites. Also switching providers, so things will be new and different and somewhat a "work in progress".
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Changes to Life

1/26/2020

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My blog (in  the past: Days Gone By) has referred to things I can no longer do or products that are no longer available:


Now in a wheelchair, I find life much different than with my walker. I still use the walker at nights, or when I NEED to stand. I feel fortunate to have that option.
Pros to Wheelchair
• don't have to pull up a chair
• waiting (in line, for bus etc) no longer concerns being seated
• unlike walker, gained two hands and a lap (foot propel)
• can  take my  chair anywhere and sit in the sun
​• people are helpful as you are obviously disabled
• felt much safer, less danger of falls, slipping

Cons  to Wheelchair
• 
FCSS can't take people out that are in wheelchairs
• snow, which I didn't have a problem with before, is now a "show-stopper"
• questions like "you look fine, why are you in a wheelchair"  Me resisting answering, "just lucky, I guess" "none of your business" "feeling lazy today"

• tiny aisles, high thresholds (limiting access to spaces) and not being able to go to places I used to frequent... And don't get me started on doors and bathrooms...
• due to inactivity, you gain weight, especially around the middle. Originally got for "long distances", started using daily
​
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January 26th, 2020

1/26/2020

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    Kathy White was diagnosed with MSA-C in Jan 2005. The creator is not a doctor or health care professional. This site reflects her own opinions and experiences.

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