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


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