Five Tips from Jon and His Father

We saw these “five tips” on an online community for those coping with Multiple System Atrophy (MSA).  The tips are about staying active, resting, scheduling activities with intent, staying positive, and having the caregiver research “all the bad things that can happen” so that the person with a diagnosis can focus on positive things.  These tips may be of interest to everyone with an atypical parkinsonism disorder.   The author is Jon, writing on behalf of his father, diagnosed with MSA in 2023.  They kindly gave permission to share.

I’m writing on my dad’s behalf and would just like to share some things about our experience since he was diagnosed one year ago.

Tip 1 – Have a caregiver to research on MSA.  I didn’t want my dad getting bummed out or paranoid about all the bad things that can happen.  We are realistic, but I’m glad he isn’t on this forum as it isn’t right for him.  Instead, I stay up to date on here and pass any important info on to him.

Starting out it was very frustrating with his diagnoses as the doctors were not very clear with expected outcomes and would seemingly contradict themselves.  From what I’ve learned there is such a wide range on outcomes and symptoms.  This is why they didn’t want to give any thoughts on this, so instead I had to research what the parameters are on this disease.  Learning that helped me out greatly.  Being on this forum has been a great help!

Edit:  There are lots of comments about this so I wanted to clarify.  My dad does understand what the diagnosis is and the progression of MSA.  This tip is specific for him because he would dwell on the negatives if he read too many stories about all the bad outcomes.  Instead I keep up on this forum and MSA research including trials.  It isn’t about keeping him in the dark, but more about him focusing on what he can control and staying positive.  I should have been more clear about this.

An analogy would be that if there were a war going on and lots of people were dying he is aware of that.  However he doesn’t read all the horrible stories about individuals dying everyday in that war because that would be too hard on him.

Tip 2 – Stay active.  Get PT and speech therapy, it can be very helpful!  For anything you want to keep doing, you need to do it every day if possible.  Walking and talking are two of the main things.

Tip 3 – Rest when needed.  My dad recently started doing Yoga Nidra (Non Sleep Deep Rest) for just a short amount of time and it has helped him to recover greatly.

Tip 4 – Schedule activities with intent.  With MSA things can tire you out way more.  When he plays with the grandkids or goes on a big walk we know now that he will need to rest more the next day.  He makes sure to plan these things out so he isn’t overwhelmed.

Tip 5 – Stay positive!  Yes, this disease sucks, but you can fight it off for as long as possible.  Enjoy every day and don’t put off anything you want to do.  We are going on a cruise with him soon.  Also camping and anything else he wants to do.  No more putting of time together as a family.

A few other thoughts – my dad really likes swimming because he likes staying active and he doesn’t have to worry about falling.  Keep community and support groups.  Do PT and stay active.  Don’t fall, use a walker if you need to.