“Tips and Tricks” from Susan

We saw these “tips and tricks” on an online community for those coping with Multiple System Atrophy (MSA).  The tips are about sitting down, using plastic bowls and a cookie sheet, using a lanyard, toileting, prism glasses, leak-proof underwear, and more.  These tips may be of interest to everyone with an atypical parkinsonism disorder.   The author is Susan, who has an MSA-C diagnosis.  She kindly gave permission to share.  At the end, she shares this message:  “I often am asked how I stay so positive, and my response is always ‘It’s one thing I can control’.”

MSA Tips and Tricks

by Susan

Here are some random tips I have found myself doing that may be of use to some of you.

Sitting down – back all the way up to the toilet, chair, bed so your calves are touching what you’re trying to sit on.  Gives you some stability as you go down and less likely you’ll “miss” the chair.  Reverse works also standing up, especially from bed.  Helps with stability.

Bathroom – wiping is difficult with little flexibility.  A Bottom Wiper is a wand to put toilet paper or wipes in.  I bought one at Walgreens, but it is on Amazon as well.  Recently I bought a bidet attachment but haven’t had a chance to wrangle someone to put on (no special plumbing needed).  I am excited to try that!

After breaking too many dishes to count (and a very unfortunate dropping of a glass pan of enchiladas), I bought some plastic bowls, plates, and TV type trays along with silicone bakeware (just be sure to put on a pizza pan or cookie sheet for better stability).

I have gone exclusively to cups with lids (lots of spilt coffee).  Smaller tumblers with handles work best.  The ones that rhyme with Manly are way too big.  The coffee cup sized ones are great for hot beverages.  Be sure the lid has a closed position and not a top with an always open drinking slot.

I have found that a lanyard for my keys and an ID pouch are invaluable.  No more trying to balance myself and digging for keys or a credit card.  I put it on before I go out anywhere.

I have been using a backpack for sometime.  Have all the extra items we might need – spare pairs of undies, pads, wipes, meds, a book (for all the doctor’s waiting rooms), etc.  Much easier than a purse getting in the way, especially walking with a cane or walker.  Frees up the hands and seems to balance things out a bit.

Speaking of underwear, and I can only speak for the ladies, Hanes has a very reasonably priced 3 pack of ‘leak proof” undies.  I sometimes use with a pad.  Works great!

Instead of a traditional cane, I use a walking cane.  It is a little taller, curved handle, rubber traction grip, and foldable.  Nice not to hunch.  I suppose you could use two but I am not coordinated enough.

I am still working due to the fact I have no hard start time.  I am a contract employee so I can go to the office on my schedule.  Nice to not set an alarm or rush in the morning.  And if I feel particularly bad, I can work from home.

Office tip – I have an extra large keyboard that is backlit.  Definitely helps as I get double vision.

Double vision – I got new glasses with prisms that pull my eyes in so less “bouncing”.  The only problem is when I take off, double vision is terrible.

Fun.  My default is to say “no” to invitations because I am worried about how much walking is involved or seating.  I am trying to say yes more often.  Many places have wheelchairs or electric scooters, or if you call ahead, and make sure you get a “low top” table.  People want to accommodate. I have made it a point to take work off one day a month and my friend and I go to the casino.  They have electric scooters to rent and I feel like my old self tooling around without help.  Tip – do not go on seniors day – scooters might all be in use!

I hope this was useful; I often am asked how I stay so positive, and my response is always “It’s one thing I can control”.

About me; my story is a bit different from many I’ve read. I attributed many symptoms to back problems, but as back healed, MSA-C symptoms worsened. I had read about MSA and the symptoms aligned perfectly to my experiences. PT (after vestibular testing) and spine doctor recommended a neuro consult, and the MRI showed MSA-C, then confirmed by a movement disorder specialist. I also am currently being seen by the Mayo Clinic in Rochester. I was diagnosed at 53, and confirmed by Mayo as a clinical MSA-C diagnosis.