Category Archives: PMA Update

Online Support Group, PMA Update

PMA Facebook Group Update

Leave a comment

PMA Facebook Group Update

PMA Facebook Group Update

Since we have now grown to almost 90 members, I thought that it was about time for a PMA Facebook Group Update. This group was founded just over a year ago and I am happy with its growth, even if participation has been a little spotty. Nevertheless, I hope that it has been of help to some of our members. Progressive Muscular Atrophy is a relatively small subset of Motor Neuron Disease in general and ALS in particular.

The group grew from the need for a place where questions and problems specific to PMA sufferers could be discussed. To date, we have kept the meeting private meaning that information found or discussed in the group cannot be seen or searched by non-members. Unless members decide otherwise, we will keep it that way.

New Chatroom Meeting

A few months back, we implemented a Zoom Chatroom meeting and held a few sessions. Back then, we only had about 30+ members and attendance was spotty and usually the same individuals. We were never sure whether the lack of attendance was due to lack of widespread notification, reticence to use Zoom or general lack of interest?!

In any event, now that Facebook has opened its own video/chat sessions within its groups, we have set up a new chatroom which can be accessed group  members only:

https://www.facebook.com/groups/ProgressiveMuscularAtrophy/rooms

Our inaugural meeting will take place on Monday July 12th at 3PM EST. Of course, all members are welcome. It has been added to the schedule.

PMA Update

PMA Update – It’s Fall Again

Leave a comment

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.

PMA-Update

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.

Assistive Devices, PMA Update

Swimming with PMA

1 Comment

Swimming with PMA

Many things, including swimming with PMA, have to be done differently when one has Motor Neuron Disease. I consider myself extremely fortunate that we have the financial wherewithal to afford the equipment that makes otherwise herculean or impossible tasks doable for those of us with physical limitations. Last year, we had a pool lift installed at a cost of around $7,500. Because we had trouble finding workmen to do the actual install, it was not up and running until late in the season and I was still able to use the handrail to enter the pool. As a result, I only used the lift a couple of times and the weather and water were both warm.

The Pool Lift

If you have PMA, PLS, ALS, or any other MND and own a pool, or are thinking about getting one this might give you some ideas of the pros and cons. Quite apart from the expense, you have to consider how well you are able to get in and out of the lift. Since I still have good upper body strength and function, this is less on an issue for me than it might be for others. However, I still have to position my power wheelchair just right to make the transition to the lift chair.

We purchased the Aqua Creek Admiral model 

swimming with pma

It was supplied and installed by a local Mobility Specialist but we needed the concrete pool deck to be prepared by drilling holes, setting anchor bolts and leveling the base plate. This was the difficult part since it was a relatively small job and few local handymen were willing to tackle it. Luckily, the company who was doing some other landscape work (making the back yard more accessible for my wheelchair), agreed to do it. The unit is pretty heavy (160lbs+) and, in our case at least, has to be removed before winterising the pool, since the winter safety cover cannot be installed with it in place.

Taking the Plunge

This year, we were able to get the pool opened up relatively early and eagerly awaited the time when we could take a dip without freezing our (insert your own word here) off. Yesterday was that day. The sun was shining and the water temperature was at 21/70 degrees. I know that to many of you this might seem on the cool side but prior to PMA, I would dive in at 18/65 degrees, so I thought that this would not be a problem!

As you can see, I was in for a somewhat rude awakening!  In the past, I would have considered the temperature just fine, since I would simply dive in and the shock would last only a couple of seconds. This time was different, being slowly lowered with no control and not able to jump off the seat until it was completely submerged was like a version of the Chinese Water Torture. Once in the water and swimming, everything was fine. Even though I have almost no function in my legs, swimming is both cooling, relaxing and a chance to exercise my legs gently. In spite of the video above, I do highly recommend it.

You can find my solution to other daily challenges here!

PMA Update

PMA Update COVID 19

Leave a comment

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 Disease Progression, PMA Update

My PMA Journey

My PMA Journey

Who Am I

My name is Roy Wallace and I was born in Reading, UK. in 1952. I am married 43 years with two children who are now 39 and 37 respectively. I have two grandchildren who are 8 and 6. I have lived in Canada since 1975 and currently reside in Ottawa, Ontario. My PMA Journey probably began around 2014 but was diagnosed with Motor Neuron Disease in October 2017 and with PMA in Feb 2018 

Although I was a jack-of-all-trades and worked in many different areas, my last career position was that of General Management Consultant for 12 years, primarily in the North Eastern United States and Eastern Ontario in Canada.

My Medical History Prior to PMA Diagnosis

Since there is both evidence and speculation that Motor Neuron Disease onset may be caused by significant bodily trauma, I will list those major events in my life that fit this bill. Without going into infinite detail, I will simply state that I have had many sprains and broken bones: arms, legs, ribs, fingers and toes, multiple surgical operations under general anaesthetic, severe and chronic lung issues including bronchitis and pneumonia, spinal injuries resulting in radiculopathy and spinal stenosis. To top it off, I have also had two bouts of kidney stones.

I cannot say whether my active lifestyle helped or hindered in this litany of medical issues. In any event, I have always been active physically, principally in running and cycling but also, swimming, tennis and kayaking.

The Onset of MND/PMA Symptoms

Although no one recognised it at the time, in retrospect, my PMA journey first started sometime in 2014. As mentioned above, I was an avid runner and at my peak would run 12 km in under an hour. Around this time, especially after a run, I would notice a rippling of my muscles, initially in my left thigh and then slowly spreading to the right after a year or so. When I brought it to the attention of my GP, he had no idea what it was and thought it to be benign. Subsequently, online research led me to believe that it was something called Benign Fasciculation Syndrome.

The next indication that something else might be going on was in January of 2017 when skating on the Ottawa Canal, known as the world’s longest outdoor skating surface. In the past, I would regularly skate its entire length and back, about 14 km. This time, 30 seconds after going on the ice for the first time in 12 months, I fell flat on my back. Initially, I thought nothing of it but soon realised after half a kilometer that I no longer felt steady on my skates. I have not skated since!

The Diagnostic Process

In that same spring of 2017, I started to notice a decrease in my stamina and my times for running 5k lengthened progressively. I started to become more concerned and after initial visits to and discussions with my GP, I was referred to Internal Medicine at the local hospital. After many tests and consultations and eventually, an MRI, it was posited that I had an L2-L3 radiculopathy on the left side and mild to moderate spinal stenosis. Since only my legs were involved and the only other noticeable symptom was fasciculations, I was told multiple times it could not be ALS.

Around May or June of 2017, I decided to visit a local RMT (massage therapist) who was written up in a local paper for having novel methods for easing muscle pain.  At that time, muscle cramps were causing me much distress. He also happened to be almost blind and said that this helped him better detect abnormalities. Although he said he was unable to help me, he wrote a letter to my GP recommending a neurological consult due to ‘systemic neuromuscular anomalies’. Although he stated that he was NOT a medical doctor, he suspected either MS (multiple sclerosis) or ALS. I find it ironic, in retrospect, that the one who first came closest to a finite definition and who put others on the right track, was not a doctor at all!

In October 0f 2017, after a second MRI and both  EMG and nerve conduction tests, the neurologist diagnosed Motor Neuron Disease of unspecified variety since she ‘could not be convinced of Upper Motor Neuron involvement’. Although ALS was not confirmed, I was immediately referred to the ALS clinic because I was at risk for falling. In any event, it turns out that in Ottawa, at least, ALL forms of MND fall under the umbrella of ALS.

Many of the staff at the ALS clinic and outside professionals all seemed baffled that ALS was suspected since my symptoms and progression fell outside the norm. As a result and after much resistance and delay, in February of 2018, I finally got a second opinion from the leading neurologist in Ottawa. After redoing the EMG and nerve conduction tests, this doctor refined my diagnosis to PMA (Progressive Muscular Atrophy). Further research subsequent to this diagnosis led me to believe that this was likely a correct diagnosis. Also in February of 2018, I discovered and joined an online group called Patients Like Me. Here there were literally thousands of pALS (patients with ALS) and a few with PMA. It has turned out to be my biggest support and source of information.

My PMA Journey is not unique! Because of my involvement with Patients Like Me, I both discovered and shared a  wealth of knowledge about, MND, ALS and PMA. Because PLM is largely a closed group and you need to be a member to fully participate, I decided to start this blog to be a source of information for fellow PMA sufferers. There is currently no separate subgroup for Progressive Muscular Atrophy and much critical and/or helpful information is either lost or confused with all other Motor Neuron Diseases. For this reason, I have set up a dedicated Facebook Group specifically for PMA sufferers and their carers