Tag Archives: PMA Update

PMA Update – It’s Fall Again

It’s been a while since my last PMA Update. I wrote the following after a recent fall. Even though I now spend most of my waking hours in either a wheelchair or a recliner, the frequency of my falls has not decreased even if their severity has.

For pALS a Fall Day is any day!

Even though I’m really not tall,
I still have a long way to fall.
And try as I might
to remain upright,
When I’m down, I just want to bawl!

Be careful, they say, and I am,
but oft things then get out of hand.
The mind is still willing, but the flesh is too weak
It’s now been so long since my legs were at peak.
I must sit down rather than stand

Now many pALS will know what I mean
And can imagine this horrible scene
There I am nude, sprawled in the shower.
To get up, I just don’t have the power
My jewels by all to be seen!

My advice: Take it easy but don’t stop!
For your limbs are all that you’ve got
’cause if you just never use them
You’ll then sooner lose them
So we must make the best of a bad lot.

To Fall or Not to Fall: It’s a question of balance!

The pun above is not only obvious but it is also relevant  in 2 ways:

  1. Walking obviously requires muscle activity but, less obviously, so does standing! To maintain balance and remain upright requires many micro-movements since we rarely stand entirely motionless. When major muscle groups in our limbs begin to fail, so do the minor ones responsible for slight adjustments as we move. What came as a real surprise to me though was how much we unconsciously use our legs to remain upright even when sitting. When you lean forward in a chair and no longer have back support, you will need to use your legs to counteract the change in your center of gravity. Core muscles also come into play in this scenario and I have become aware that as these start to weaken, balance, even when sitting, can become precarious.
  2. The real balance that needs to be addressed though, is that between using muscles to keep them active and limber and  doing this safely. The more you move, the more likely a fall. The less you move, the faster the muscles will atrophy. For me, the balance comes between moving and exercising on the one hand and minimising falls on the other. Let me say, in the spirit of full discovery, that I have fallen maybe half a dozen times in the last 3 months alone. Fortunately, in spite of  a few cuts and bruises, none has been serious.


My major recommendation would be to find a way to exercise safely. For me, that has been in the pool. It is the only place where I can stand erect unassisted and can even move my legs to some degree. We even added a pool heater to extend the season and just closed the pool (Oct. 24th), two days before our first snowfall here in Ottawa.

PMA Online Support Group Update

PMA Online Support Group Update


Since we have now had 4 Zoom meetings, I thought that I would take this time to issue a PMA Online Support Group Update.  Although we have started out slowly, each meeting seems to have more participants than the previous one.

We have had participants from all over North America and,  speaking for myself, this is the first venue where I am able to discuss problems and solutions with ONLY those who have the same diagnosis and similar symptoms and progressions. It is clear that there was a need for a Support group of this nature.

Ongoing Schedule

Although I had originally thought to make the meetings weekly due to the current lockdown, (Apr – May 2020), it may be better to move to biweekly sessions. I will not make the switch until I have canvassed the members of our Facebook Group, which now numbers almost 30 members. I will post a poll to see what the consensus is on this. As before, you can get the link to the next upcoming meeting on the schedule page

Discussion Topics

So far, we have largely held open sessions with no particular format. However, going forward, I would like to have a selected topic each meeting to help to focus conversation and encourage members to share information that they might otherwise not realise could be helpful to others. The overarching goal of these meetings is to highlight areas where the specific needs of a PMA sufferer may differ from other pALS. Potential subjects could include but not be limited to:

  1. Current Medications – Radicava, Riluzole, 
  2. Power Wheelchairs, scooters, walkers, etc.
  3. Over the counter medicines and supplements
  4. Online and offline sources of trusted information

I would encourage others to put forward any suggestions that they might have either by commenting here on this site or on the Facebook Group

If you have not yet attended one of these meetings, I would highly encourage you to drop in. You might be very surprised what you might learn and how you can be helpful to others in the same situation.