October 3 is officially National Multiple System Atrophy Day, (M.S.A.) It is a day to make others aware of this rare illness. I suffer from this condition--another term is olivoponto cellebrar degeneration. Help the ill and their families get the word out that WE WANT and WE NEED a cure.
Feeling disgust when online. Everything for disabled /elderly /medical/ handicapped is highly inflated. Started looking in baby stuff. Babies also have a hard time eating, balancing, walking...
Wheelchair Woes March 10, 2019 Do you know someone in a wheelchair? Hair winding around the small wheels slowed me down considerably. Thought I was slowing down/getting feeble....
Apparently it should be done every 6 months--who KNEW? (probably everyone)
Another person pushing was no problem. So caregivers may not notice.
Getting around my home was no problem--what's a few seconds? Where I DID finally realize something was wrong was LONG distances (long hallways, across lobbies, etc). Turned my wheelchair over and discovered the small wheels weren't spinning. The problem was hair wrapped around the wheels and in bearings.
In retrospect, the ramp problems on the handibus, getting over thresholds, using my arms to supplement foot propel have disappeared!
The only thing I'm dealing with now, is using the same amount of force it previously took, has me going at excessive speed or running into things!
Gift idea! November 4, 2018 Poncho coats/capes. Ideal gift for anyone in a wheelchair. Long in front and back, short on sides. Doesn't get caught in wheels. No buttons, zippers, fasteners. Variety of weights /fabrics /colours for indoor or outdoor warmth. If it's REALLY cold, it layers overtop jacket.
crocs October 30, 2017 found crocs that gave good grip and were different from the traditional. I found boots, shoes, lined clogs, multiples of colours... All with a pic of the BOTTOM to show grip. One user noted wearing a pair of crocs clogs in the shower for better grip. I've used the shower/sink to clean shoe treads to give more traction, as floors tend to be dusty.
Popcorn Twists Replace Chips August 27, 2017
NEW FIND! Emailed Coop (who delivers most of my groceries) that I was experimenting to replace beloved potato chips (choking hazard). They sent Popcorn Twists. I am delighted. They melt in your mouth, make no mess, easier to pick up, less calories, satisfy my "chip urge", and the nutrition is based on 50 g (4 cups vs 33 chips)...
"They" told me I have dysphagia. I guess the coughing I've been doing for years has a "word". I've just operated on the theory that if a food is hard to eat, you just don't eat it anymore. Knowing this and having a list of foods to avoid, makes me understand senior care/food more. Avoiding soup is no problem, as it's not worth the effort to eat anyway. Thickening stuff? Good idea, I just can't see opening the thickener lid, measuring, stirring... Worthwhile suggestion? A ol' fashioned sugar dispenser.
Changes June 6, 2017 at 10:45 AM
Added a foot propelled wheelchair to repetoire. Loaner was hand propelled which was hard on arms and shoulders. Use my walker for standing. Nice to have a choice. Have found the "chair" is more comfortable than my furniture, more stable, especially in the wind. I like being able to go out in front of my building and read in the sun. Got new walker. Guess WD40 won't do it anymore. It's been at least 5 years. Guess they wear out. Losing more voice, more saliva in mouth, less balance, less coordination. More difficult in shower. On wait list for nursing home. It's been 3 months though, and have found new ways to manage, so when the call comes, I may turn it down and go to the bottom of the list. Can't find an upside except they do the cooking and cleaning.
AHS Placement February 10, 2017 AHS is processing a supportive living placement for me. I need to check out cost. I do not understand how I can survive on an AISH allowance of $1588 and still meet additional expenses. Other things to consider are the pros/cons of living on my own versus an institution. B12 Deficiency January 16, 2017 My doctor confirmed Jan 13, 2017 from a blood test that I had a vitamin B12 deficiency. Its symptoms included many things that I just thought was my MSA advancing. Eat nutritious! Get tested!
Twitches? August 21, 2016
Right leg muscles are twitching or spasming for hours. No pain. Odd to see my leg twitching like that. Stretching and movement don't seem to make a difference. This week has been odd too, more clumsy than usual, dropping more stuff, more speech problems. May have to consult the internet (gasp) (as it has become my source for knowledge on MSA as doctors haven't heard of it)
Foot Cramps February 10, 2016
Foot cramps, which I had heard were part of MSA, happened infrequently. As much as it hurt, it was still cool to see your foot and toes writhing like that. It's like a "charley-horse". Today, though, it happened 4 times to both feet. Three times in the pool and once at the supper table. With the last one, I did find it stopped when I touched cold linoleum.
Nuts February 8, 2014
Nuts and chocolate are just wrong! Nuts in ice cream and puddings is just wrong! Reese's anything is just wrong! Why add nuts to cookies, loaves, when there are soft chewy raisins? Or fun things like chocolate chips?
Foods I Avoid February 8, 2014
Foods I avoid with MSA (swallowing problems and to avoid choking): • Popcorn • Peanuts, hard nuts of any kind • for some reason, tea makes me cough. ANY liquid just means I need to go to the bathroom more than usual. Foods that make a mess: • rice • peas (prep and eating) They roll!
Protect Those Toes! March 28, 2014 My moccasins and slippers keep my feet warm, protect my toes from many stubs, scrapes and scratches.
Important Contacts, Grande Prairie March 29, 2014 AISH 780-833-4399 Coop (Grocery and stamp delivery) 780-539-6111 FCSS 780-538-0374 Handibus Dispatch 780-830-7433 Home Care 780-532-4447 Library Shut-In Program 780-532-3580 Shamrock Pharmacy Located in the Coop (Prescription delivery) 780-532-2652
Rare? October 4, 2013
Just heard about some else with MSA--or he used to have--passed away at 70, I knew it was rare (1 in 40,000) but apparently there are only 40 people diagnosed in Canada. Was able to share some info, as well as the MSA The Multiple System Atrophy Coalition.
after 4 months of absenteeism, it's probably time to return to the gym.
Although not financially feasible, it's a fact of life--- I feel the need, and expenses can't get any lower.
Feet are cramping, and when I fall (with my walker), I can't always get up. Things hurt too like neck, back, legs. Furniture walking is scary now. I've noticed a decrease in motivation, too. Exercise keeps things like blood pressure and depression in check.
I can die in pain or die fit. I look pretty good for someone who died years ago... lol
Clothing April 8, 2012 My daughter took me out clothes shopping.
If you're buying clothes for disabled people, do without buttons, zippers, etc.
My daughter was picking out amazing stuff, until she realized some of it was just HARD to get on. She had to rescue me from things I just got stuck in. Sweat suits might not be ideal, but they are warm, colourful, and comfortable.
She also found me some nightshirts that were dark, and attractive, and less like pyjamas. Earth Hour April 1, 2012 at 1:10 PM Earth Hour this year was different. For those of you that don't know, it means you turn out the lights for an hour. I had planned on cleaning and folding, but didn't realize how hard it would be without full light. I realized that balance has a lot to do with seeing well in the light. So I sat a lot.
Next year, I'll go to bed.
Proloquo March 21, 2012 I searched the internet to find a speech aid program that would work on an iPhone (which I hang around my neck, works as a Lifeline®, too).
I found Proloquo 2 Go by AssistiveWare.
I enjoy teaching it to speak "adult stuff", instead of the school talk it comes with. I have input my address, email and medical information. In noisy restaurants, it can order for me as speech gets quieter and then stops. Utilizing an iPhone is much smaller than traditional speech machines.
9" long stainless steel spoons that also work as a straw. Everyday Style sells them and they're 4 for $12 Cdn.
I find them ideal for my smoothies, and keep one in my purse for soups, beverages, etc. I used to carry plastic straws, but found they bent or broke.
Avoiding A Wheelchair March 18, 2012 Doctors claimed I would be in a wheelchair by 2010. Nope. Thanks to regular exercise.
I broke my ankle June 2011 and was confined to a wheelchair. That was a real eye-opener how tough it is on people in a chair, not to mention how hard it was on my walls. I learned there are many places you just can't go.
I travel on the handi-bus to the gym 3 times per week (2012). In 2015, it's weekly to the pool.
I use exercise to strengthen my core muscles, which helps to give me balance.
Olivo ponto cerebellar degeneration March 18, 2012 Olivo ponto cerebellar degeneration? What is that? I define it as a long phrase meaning "my brain is shrinking".
Symptoms started appearing in 2003, but I didn't get a firm diagnosis from the neurologist until Jan. 31, 2005. Life expectancy is 7-9 years after diagnosis. Since that would be 2012-2014, it obviously didn't come true for me. It has been called "slow progression". I call it "lucky".
Genealogy Find October 17, 2012 I was doing some genealogy research (new sit-down hobby) and found a person that as described in her obituary had a similar condition (cellebrar ataxia). The good news is that she entered a nursing home at 56 yrs and lived until age 75 years!
Coke vs other colas April 8, 2012 I do like the "squished-in" bottle shape and wider threads on Coke's twist-cap. Makes it much easier to handle. As a matter of fact, I substitute the caps on whatever works--iced tea, bottled water....
Good days... bad days April 4, 2012 Some days are good days, and some days are bad. I found out on the way to the gym that it's a "bad" day.
So after I finished with the exercise bike, I remained seated and my iPhone got a good workout with Solitaire!
Legal stuff April 1, 2012 When I talked to my lawyer, I asked him about signing extended phone, cable etc. contracts. If it was legal if you didn't know your life expectancy. He responded that it was legal, as a cure could be found and NO ONE knows their life expectancy. I suppose, after all, ANYONE could be hit by a bus...
I fall often, so I have "childproofed" my home, eliminating sharp edges, removing rugs I could slip on etc.
• reduced fine motor control
Lasik/Cataract Surgery September 10, 2010
Originally went for Lasik but prescription was too high (-9.5/-11.5) (6" vision) and I was over age 44. They did cataract surgery instead, inserting new high tech contact lenses right in the eye. The high cost of the multifocal lenses was covered by Zeiss Laboratories, Germany at the request of my opthamologist Dr. Daniel Senekal. I underwent the procedure in Sept 2010, and it was quick, painless and definitely a plus.
Result? Permanent and it's truly great being able to see in the shower, no worries about losing a contact while swimming, no glasses adjustments /fixes etc. No more problems from "falling into bed".
As I fall often, I found I was spending a lot of time getting my glasses adjusted. Not to mention what a problem that would be if I ever broke them.
It was getting harder and harder to insert normal contact lenses into my eyes. Not to mention cleaning them properly and storing them in their little case.
What's not so great? After all these years, still push up my glasses (and poke a finger in my eye) and I used to take my glasses off and fall asleep instantly (there was nothing else to do). Now I wake up and think "It's a miracle!"