Tag Archives: COVID 19

PMA Update COVID 19

PMA Update COVID 19 Edition

Disclaimer: I am not a medical professional nor an infectious disease specialist and any views expressed here are for your consideration but should not be taken as gospel without due diligence. Besides this PMA Update COVID 19, the ALS Society has published a great deal of information about the Novel Coronavirus and MND

My Personal PMA – COVID 19 Journey

When the world-wide pandemic of Coronavirus first became wide-spread, I was in Switzerland which subsequently became one of the world’s early hotspots, likely due to its being landlocked with its population being condensed into small clusters and being a crossroads of sorts within Europe. I was in Milan in late January which would later become the European epicentre of COVID 19. In the Lausanne area, however, there were still only 2 known cases when I left Switzerland for Canada. Schools had just been closed and many adults were already starting to work from home.

As I arrived at the airport in Geneva on March 16th for my return flight, I was casually informed that my flight was to be the last scheduled flight by Air Canada. The flight was packed solid but there appeared to be no coughing or sniffles near me. When I arrived in Montreal, I discovered that all flights to Ottawa were cancelled. Air Canada magnanimously offered to re-route me through Toronto adding a further 8 hours to my journey. Fortunately, I was able to convince my wife to drive 200KM (each way) to pick me up.

Since being back in Ottawa, after undergoing the mandatory 14-day self-isolation, I have done my utmost to limit any potential exposure. Since I am over 65, have compromised lungs in addition to Progressive Muscular Atrophy, I consider myself high-risk.
In retrospect, I consider it quite likely that I already had a mild case of Coronavirus, since both my grandson and I had a mysterious illness in early February which featured mild fever and cough as well as some other odd symptoms (headache, diarrhea, etc.) Until such time as antibody testing becomes available, I have no way of knowing for sure. Therefore, I must continue under the assumption that I am still susceptible.

Are PMA patients AUTOMATICALLY  ‘High Risk’?

The answer to this is: it depends on your personal risk factors. Once again, PMA sufferers are grouped with ALS patients when discussing this aspect. I have come across opinions on both sides. Since the majority of pALS succumb to respiratory failure and the Novel Coronavirus primarily affects the lungs, it seems prudent to assume that they should be placed in the high-risk category.
On the other hand, many, if not most, PMAers will not likely experience lung issues unless they progress to full ALS. PMA, although generally slower progressing than many other Motor Neuron Diseases, is still considered fatal and thus should be seen as a co-morbidity.
Factors other than PMA itself can place us in the high-risk category:

1. Compromised Immune System
2. Living in a Retirement Residence or Nursing Home?
3. Heart or Lung Problems – hypertension, diabetes, asthma
4. Age – 60+

Do ALL Social Distancing rules apply to PMA?

It is not a coincidence that the bulk of COVID 19 cases and mortalities are in retirement facilities and long-term care. Those of us with Motor Neuron Diseases typically require physical assistance that makes social distancing impractical at best and impossible at worst.
Even those of us NOT in nursing homes or long-term care will likely need physical assistance of one sort or another. You cannot be assisted in bathing, dressing or eating from a distance of 2 metres. Feeding tubes and respirators all necessitate a ‘hands-on’ approach. It is hard to imagine that ALL personal support staff and visitors must continue to wear full personal protective equipment (PPE) at all times. However, masks, hand sanitizer and frequent, thorough hand-washing are a minimum protection and should likely remain in place even after the pandemic subsides.

Is the Novel Coronavirus as deadly as PMA?

PMA, although it typically has a slower progression and therefore a longer life expectancy, is still 100% terminal. Current estimates are that only less than 3% of the general population will eventually succumb to COVID 19. These numbers skyrocket however when we include the elderly and those in Long term care facilities. Currently, in Canada, we are learning that almost 80% of all Coronavirus fatalities are in this group. There can be little reasonable doubt that morbidity rates increase when those of us with any motor neuron disease also contract COVID 19.

Should I do anything differently to protect myself?

Now is not the time to be reticent or polite! This is YOUR life and health at stake. Insist that others make special allowances for you: shopping hours, get stuff delivered. Keep up with range-of-motion and whatever other exercise is both beneficial and appropriate.
You are probably not getting the visits and human interaction that you are used to. Be proactive: phone, Skype, Facetime, Email, Social Media, online games etc. All contact is beneficial. Above all, try to avoid the temptation to become depressed. Lean on others, at a distance of 2 metres 🤔, for support and assistance. One of the positive aspects of these unprecedented times is that many, if not most, are stepping up to help those of us who need it the most.

PMA Online Support Group

The PMA Online Support Group is about to go live!

Mark your calendar for 3PM EST on Monday, March 30th. That is when we will hold our very first PMA online support group meeting:


Clicking the link above will take you to the Zoom Video chat website, where you will be asked to download the appropriate app for Windows, IOS or Android. You will need to do this prior to entering the chat room.

N.B. You do NOT have to establish a Zoom account to take part in this meeting. You DO need to download and install the software, however.

There was NEVER a better time!

With all the social distancing brought about by the current COVID 19/Coronavirus pandemic, many PMA sufferers are shut off from much of their usual support, both  medical and social. We are hoping that this meeting will help to fill the gap. We can share hints, tips and experiences to help others, whether PMA sufferers or their carers, to overcome some of the additional obstacles and problems brought on by this once-in-a-lifetime situation.

Hopefully, The First of Many!

Provided that there is sufficient interest and participation, this will become a weekly event. The meetings will be limited to 40 minutes in length (a Zoom restriction to maintain FREE status). This seems to me to be a perfect length of time. Going forward, we will choose a weekly topic and after approximately 5 minutes of introductions,  we will devote 20 minutes to this topic and use the remaining 15 minutes for general discussion. This is only an initial suggestion to give the meetings some direction and structure and is open for discussion.

How ZOOM works

The process is simple and seamless. For each meeting, there will be a link to click. Whether you are using Windows, IOS or Android, the process is the same. You can go to the Zoom Website for a detailed explanation. You will need a cellphone, desktop, laptop or tablet with both a microphone and video (not compulsosry). Simply click the link and follow the instructions. You will only have to install the software once on each device that you use. You can do this ahead of time if you wish but it only takes a few seconds, so this is not critical. The website above does give some hints for optimising your experience.

We look forward to seeing you on the call. In the meantime, join our Facebook Group, which is where we will post scheduled meetings and other relevant updates. You can also check out the large amount of information contained on this site.

To save you scrolling up, here again is the link to enter the meeting:

PMA Inaugural Online Support Session