Category: wheelchair
My MS in September
- I wake up in the morning, wiggle my toes and put my knees to my chest and rock side-to-side a little bit.
- I sit up and hang my legs over the side. I bend over, touch my toes, then back up a few times just to get the blood kind of going.
- I turn off the white noise machine next to my bed and turn on the light there which I leave on for the rest of the day
- From the drawer next to me I retrieve the pill container where I keep a weekly supply of pill doses (I take stuff twice a day). I swallow my Gilenya and a few other meds and supplements in the morning using the waterbottle that I keep on my nightstand and refill as needed.
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Then I scoot the wheelchair over to the side of the bed and maneuver myself into it
- Reusable bed pads are called chux.
- It’s okay, may be preferable, to eat apple seeds, so core and all.
- The Bletchley Circle (BBC TV series) only ran for two seasons from 2012-2014 but the concept was apparently tried in the US with The Bletchley Circle: San Francisco in 2018.
- Waterpik Water Flosser replacement tips should be replaced every six months, and if you buy one at a garage sale you should replace the existing one immediately! (Also you can download a user manual at the company’s website.)
- Most peppers are not overly spicy but the ones with the black seeds are hot! Use gloves when removing the seeds and don’t rub your eyes!
Stress and my “clutter threshold”
- A Slob Comes Clean | website and podca
- 4 Triggers That Can Cause MS Flares | article
- Study Shows That Stress Can Lead to MS Flare-Ups
Troublesome Tysabri
Lorna’s briefest history of the ADA




- book Enabling Acts: The Hidden Story of How the Americans With Disabilities Act Gave the Largest US Minority Its Right | (2016) Lennard J. Davis
- .pdf ADA and People with MS | (2015) NMSS
- article The Curb-Cut Effect | Stanford University
My wheelchair
OH has become the craigslist master, finding free stuff in the ads that he needs to finish construction on our house. Not just bay windows, but hardwood doors, a complete closet system, even lumber.
And one of the things he recently found for free is a wheelchair. It doesn't have its footrests, but when the humanitarian who was offering 4 free, used wheelchairs learned that I have M.S., he told OH that he would reserve the best one for me.
Ever since we went to Bellingham and used the borrowed wheelchair, I have realized how useful a wheelchair is to accommodate us together. While I do have my scooter, a wheelchair allows OH to stabilize himself while pushing me.
When I was diagnosed in 1991, I was told to go home and start preparing to be in a chair soon. I even saved some ratty Chuck Taylor Converse hi-tops to wear while in the wheelchair so that people wouldn't see me and feel pity, that everyone would know I used to be able to walk.
But as time went by, I stopped waiting for the possibility. And I believed what the doctor told me in 1991, that I could assume the severity and progression of my disease could be gauged by the initial five years after my diagnosis. Obviously wrong.
Now the wheelchair is folded up in the living room corner, calling to me. I'm always aware and worried when I am hobbling around that I will fall down. It's tempting to know that I could be less stressed about it by sitting down.
The author Nancy Mairs who chronicles her M.S. in books like Waist-High in the World: A Life Among the Nondisabled recounts that she had a serious fall on her head then decided she would "give up walking" after she "had another such mishap."
However I don't want to "give in" to the deterioration prematurely. And "sitting on your ass" is synonymous for being lazy. So how will I know when it's time?