“I am not a grey person. I am black and white, I want to know what it is and how much time I have left. I was originally told a(sic) PMA but I don’t fit that category completely either. This is all so frustrating!”
I can fully understand the frustration. The real problem lies in the fact that ALL MND variants are still diagnoses of exclusion. Only when all other possibilities are exhausted, will most neurologists give even a tentative diagnosis. Personally, I saw 3 different neurologists before I saw enough evidence that PMA was the most likely culprit.
As a side note, it seems that Binuna Bodies, although said to be found in 80%+ of ALS patients upon autopsy, occur almost exclusively in the Lower Motor Neurons. Therefore, although they may be useful in diagnosing PMA, ALS, by definition, requires BOTH upper and lower motor involvement.
Unfortunately, we are still in the early stages of our understanding of the class of ailments lumped together under the heading of ALS (or more correctly Motor Neuron Disease). I remember, not so long ago when cancer was a term for a supposedly singular type of disease. Now it is a generic term relating to a myriad of differing presentations and locales within the human body. Today, there are diverse diagnostic tools and disease pathways with even more treatment options depending on the site and type of the disease.
For me, this is what MND will finally become, a whole class of diseases with differing symptoms, treatments and outcomes. Unfortunately, I suspect that we are currently so far behind the 8 ball that nothing significant will likely happen during my (remaining) lifetime.
Over the last few years, I have come across and corresponded with scores of PMA-diagnosed pALS and, so far, although we have many things in common, there is much that differs in our cases, histories and progressions. I have finally come to terms with the fact that I alone must decide what I believe based upon all the information available to me.
I have decided that PMA indeed seems to be the most logical diagnosis. No one even knows if the currently accepted treatments for ALS (primarily Edaravone/Radicava and Rilutek/Riluzole) are suitable, or indeed beneficial, for PMA patients.
In the end, as long as I remain convinced that no other diagnosis better fits my situation, I will remain under the ALS/MND umbrella because the majority of the resources made available as a result are very helpful.
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:
Current Medications – Radicava, Riluzole,
Power Wheelchairs, scooters, walkers, etc.
Over the counter medicines and supplements
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.
I recently came across a list of things that non-pALS could do to begin to imagine what it is like having MND/ALS . The list contained some items that did apply to PMA, in my case at least, and some that didn’t. It did get me to thinking about symptoms, obstacles and challenges and how I have come to terms with them either by finding workarounds or by accepting that I will have to make the best of my ‘new normal’.
PROBLEM:I continually have cold & swollen lower extremities. This is the absolute worst of my symptoms because I have found no permanent solution that does not involve lying with my feet up. Try to imagine sitting all day with your feet and legs immersed in buckets of cold water! My neurologist told me that this was not a ‘normal’ problem for pALS but research on PLM shows 300 instances ranging from severe to moderate
SOLUTION: Although I can get temporary relief, this one persists. Partial or temporary solutions include:
Heated socks, long Johns, heated insoles, compression socks, keeping feet and legs moving as much as possible. All I can still do autonomously is wiggle my toes but even manipulating or massaging my feet and legs seems to help blood-flow! I refuse to stay supine all day. Last year, even when in Barbados, I still occasionally had cold feet!
PROBLEM:Constant Fatigue. This is the second most challenging part of the disease for me. After the exertions of taking a shower or bath or even simply(sic) getting dressed, I usually want to go back to bed. I suppose that it is really not surprising since I am trying to carry 50lbs of dead weight around with only my upper body functioning. Imagine having a 50lb bag of salt strapped to your waist. Now try to move from one chair to another!
SOLUTION: Other than staying inactive, I really have not found any meaningful solution. I do know that the absolute worst thing that I can do is to ‘power through’. When I become overtired, my muscles ache, tremors and fasciculations abound and I risk crashing the following day too. I have determined that I can do more earlier in the day and that I can accomplish more if I work in fits and starts rather than trying to continue tasks once I start to become tired. If I need to take a nap in the afternoon, this is a sure sign that I overdid it in the morning. I do regularly check relevant vitamin and mineral levels in my body and do everything to keep those at optimum levels. I aim to keep my body in the best condition possible to help offset the physical deficits.
PROBLEM:When outside the house, any obstacle higher than 3″ might as well be Mount Everest. All I can do is either stare powerlessly at where I want to go or, retrace my route and try to find another way. Check out the top image to see Milan’s idea of accessibility. 90% of stores and restaurants were inaccessible to my wheelchair (also pictured).
SOLUTION: Until such time as they develop scooters and wheelchairs that climb stairs and curbs, there really is no solution to this except to re-route. We do have a portable ramp in our SUV that can handle steps and curbs up to 6 – 8 inches but we can’t carry it with us all the time. In any event, often sidewalks are not wide enough for the wheelchair or scooter to navigate the ramp.
PROBLEM: Cramps and Fasciculations. Many medical professionals claim that there is no pain associated with MND (LINK). This is patently not true. In my early stages, some of the cramps were so intense that they approached the magnitude of kidney stones.
SOLUTION: I must stress here that what has worked for me may not work for others. For the cramps, regularly taking supplemental magnesium seemed to greatly reduce the intensity. The most relief for both cramps and fasciculations occurred once I started to regularly use CBD/THC blends.
PROBLEM: Dressing, Toileting, bathing, shaving, showering, etc. Before PMA, I could shower and dress easily in 10 – 15 minutes. Now it can take an hour or more and I still have full upper body function. To get some idea of how challenging this can be, try these two exercises. Try to put on knee-high socks while wearing mittens or try to pull up your pants and underwear while seated or while standing holding on for balance with at least one hand.
SOLUTION: We spent $30,000+ to have our bathroom remodelled by an accessibility specialist. It was expensive but worth every penny. It still takes me a while but at least I feel safe and can get my wheelchair/walker in the room. I now wear clothes that have few buttons, clips or belts. I also make sure that I have the necessary seats and supports in the places where I will need them. With the right methods and equipment, many challenges can be mitigated although rarely eliminated altogether.
PROBLEM: Navigating Stairs. We live in a 3 storey home. Stairs to the upper level not only curve but have two landings. To the basement, we have two sets of steps with a 180-degree bend. In any other house, if I am even able to navigate into the house using ramps etc., I must resign myself to the fact that I will NEVER be able to go upstairs or downstairs.
SOLUTION: We have so far installed 2 stair-lifts. One goes all the way upstairs but to get to the basement, I must hoist my body up and down 3 steps to reach the second stair-lift. We have also installed a porch lift so that I can get from the deck to the garden/pool without going through the garage and all around the outside of the house. Beyond our own house, I must accept the fact that I am barred from many friends’ houses and an alarming number of businesses and public buildings.
PROBLEM: Finding Accessible Washrooms. I recently spent 8 hours on an aircraft within 6 feet of the nearest washroom but was unable to access it. Many public locales that claim to have accessible facilities either keep them locked or they were designed by people who do not comprehend what ‘accessible’ means.
SOLUTION: Having travelled widely with mobility equipment throughout North America and Europe, I can attest that we still have a long way to go but that things ARE improving (even if slowly). As the world’s population ages and technology advances, it is my fervent hope that future generations of mobility challenged persons will be even better served than our own. Notwithstanding the foregoing, I must say here that I am eternally grateful to be living in a part of the world where I have access to most of the facilities and equipment that can make my life easier and more comfortable. Were I living either as little as a 100 years ago or residing in a 3rd world country, I would already be dead!
PROBLEM: Navigating the medical professionals who, with the best of intentions, insist that they know what is best for me even though the vast majority of them have rarely, if ever, treated other patients with the exact same disease (PMA -Progressive Muscular Atrophy) and progression as myself. To put this in perspective, there are currently less than a handful of cases in Eastern Ontario from a population of 1.5 million. Of these, only 1 other individual has lower limb onset PMA like myself.
SOLUTION: Do your own research, join forums and Facebook groups and make sure that you know more about your own situation than those caring for you. Don’t take ‘no’ for an answer and DEMAND that you be heard. You ARE in control as long as you insist upon it. Swallow your pride and ask for help when you need it, especially from friends and loved ones. Even total strangers will often step up to the plate and freely and willingly offer assistance. Taking advantage of this shows strength rather than weakness, just be sure to say ‘thank you’. This is/was one of the hardest things for me to accept and I am still struggling with it every day. Many times in my life, I have been guilty of ‘cutting off my nose to spite my face’. I can no longer afford this luxury.
In conclusion, I must say that, as a society, we have a long way to go before “PMA – Problems Made Acceptable” becomes a reality!
Our inaugural PMA Online Chat was held as scheduled on Monday, March 30th. Although we only had 3 attendees, thanks to Tom and Chris for being willing Guinea Pigs, everything went smoothly with the Zoom meeting platform. We are now ready to open things up and to hold regular (currently during COVID 19, weekly) meetings
This page will be where you will come to find the PMA online chat schedule. Below you will find the date, time and discussion topic for our next scheduled meeting.
NB: This is NOT a Zoom meeting but is within the Facebook Group
N.B. Zoom has recently introduced a requirement that ALL meetings MUST now have a password. Although the meeting ID has remained the same, the new link above now includes the password to avoid you having to enter it separately.
HOW TO CONNECT
It is really easy to use the ZOOM video conferencing system. You can connect using most devices, IOS, Windows and Android are all supported and your device type will be recognised when you click a meeting link for the first time on each/any device. Just follow the simple instructions. You do not have to download the software (though it is recommended) but can log in directly from the link. Some users do experience audio problems the first time but this can be easily fixed by clicking the arrow beside the mic icon and selecting appropriately. You can also set yourself up before the meeting to make sure that everything works for you. You can use the following link above for more detailed instructions.
MEETING FORMAT
Due to the limitations of a FREE Zoom account, our meetings will be limited to 40 minutes duration and 100 participants. We are not likely to exceed the attendance limit because that would involve a substantial portion of the North American PMA population.
We will divide the meeting into three sections:
INTRODUCTIONS: People will share their names and a brief outline of their (or their pALS) history with PMA. This will be limited to a maximum of 10 minutes depending on attendance numbers.
WEEKLY TOPIC: We will select a weekly topic picked by participants. There may be a short introduction by a member well-versed in the topic followed by questions and comments from the members. This section will typically last 15 minutes but again will be flexible enough to allow for all questions to be answered. If there appears to be too much material or discussion, we will extend it to a further meeting rather than curtail, too much, our final section.
OPEN FORUM: This will be an occasion for any participant to raise any question or put forward any hints, tips and suggestions.
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:
Although Motor Neuron Disease started in my left thigh in 2014 and slowly progressed to both my lower limbs by 2017, I knew as early as 2016 before my official diagnosis, that there was some upper body involvement in terms of tremor and fasciculations. Fast forward to Oct. 2019 and I can now say with some certainty that my hands and arms are becoming compromised.
This development hit me pretty hard since I had hoped, perhaps somewhat irrationally, that my upper limbs would be spared. My legs are all but useless. I cannot walk without support on both sides and even then, only for a few steps. Otherwise, until recently, I thought that my upper body was spared. Then, a few weeks ago now, I noticed my digits twitching when I asked them to perform fine motor controlled movements like pressing buttons on remotes. I also realised that when performing repetitive motions like peeling vegetables, my arms were starting to feel tired and heavy. That was the bad news.
The good news is that I still enjoy 95% function in my upper body. My wife still hands me jars to open that she cannot and, so far, I have succeeded in retaining my machismo! 😉 Again, today, a young healthy man of 22 years of age who is staying with us, was prevented from leaving the house because, try as he might, he could not rotate the front door handle.
“It is obviously jammed!” he opined.
I was tempted to believe him but after hobbling to the door with my walker, I turned the knob and opened the door without issue. It was a little stiff but definitely NOT stuck. This was the same young man, a Mexican exchange student, who I have been helping to perfect his English while he stays with us. He was very happy last night when I returned his latest work product virtually without correction.
Max, the Mexican
All of the above is to show 2 things:
For MOST pALS, disease progression does not stop! That is why almost all Motor Neuron Diseases are considered fatal. Progressive Muscular Atrophy (PMA), with which I am diagnosed, is no exception. It WILL eventually kill me.
Muscles do not make the man! Mind over muscle, for me, does not mean that I can mentally force an atrophied muscle to magically spring back to life. Rather, it means that as long as I have my mental faculties, I can still live a useful and fulfilling life.
Rather than bemoan the abilities that I have lost, I am grateful for all the many and varied things that I did while I was still able. In addition, I mentally list all of those things that I can still do. I accept that I will gradually lose many more physical abilities but as long as my mind is sound, willing and able, I will soldier on….
It is now exactly two years since I first heard the words: “You have Motor Neuron Disease”! My PMA disease progression in the last year has been slowed but nevertheless significant. I thought that it might be useful to outline what has happened in the last year; highlighting what has changed and what has remained relatively constant.
FRS Score
Known in full as the ALS Functional Rating Scale (Revised) – ALS-FRS-R, this is the primary method for determining the relative disease progress of pALS (person or people with ALS). After declining 6 of 48 points in the first six months after diagnosis, I have remained stable still scoring 41/42 on October 7th 2019. This much, at least, is good news. It would seem as if progression has all but stopped. If you read on though, you will discover that this is far from the truth.
Symptoms
This is where things start to diverge from the FRS score. Although some aspects of the disease have abated somewhat, others have become more noticeable.
Fasciculations – Compared to a year ago, fasciculations are less noticeable and generally mild. On the other hand, although initially confined to my legs, I now notice them more in my upper body. Apparently, according to the EMG, they were always there, I was not really aware of them until recently.
Muscle Atrophy – A year ago, I was still able to walk around the house without a cane. Today, I can’t even walk with only a cane. I must either use crutches or a walker/rollator and even then can only manage 100 metres or so. My latest neurological consult revealed that some muscles in my legs and feet were totally inactive! Overall, my weight has remained constant and I feel like muscle mass has moved from my legs to my arms and shoulders. This is no surprise because my upper body now performs much of the work that was previously carried out by my feet and legs.
Blood Circulation – Cold feet and legs and swollen feet have been a consistent problem since diagnosis. Compression Socks have been a great help in reducing swelling, although the struggle to get them on sometimes makes me wonder whether it is worth the effort. You can see in the section below, how I mitigate this problem.
Liver Function – I have had elevated liver enzymes for most of my adult life and liver problems run in my family. There was considerable concern, when I started Rilutek/Riluzole, that my liver would suffer. Eighteen months in, my levels have, in fact, declined. I attribute this improvement to the removal of my mercury amalgams and consistent use of liver protectants (see under supplements below).
Pain and Stiffness – Many medical professionals claim that there is generally no pain associated with ALS/MND/PMA. I wish that they could walk(sic) a mile in most pALS’ moccasins, so that they could see just how wrong they are! Prior to and during much of the first year post-diagnosis, pain was a constant factor: muscle cramps, lower back pain and aching muscles and joints. Since starting regular magnesium supplements and using medical marijuana/cannabis, pain is mostly a thing of the past. It can reoccur, however, if I overexert myself.
Medication
I have never been much of one for medications. Therefore, this will be a short section.
Riluzole/Rilutek – When I was first diagnosed with Motor Neuron Disease in October 2017, even though it was not a firm diagnosis, I was offered Rilutek/Riluzole immediately. I only accepted in February of 2018 when I was given a firm diagnosis of PMA I have now been taking it for 18 months with little side effects. I cannot say for sure whether it has helped my PMA disease progression but given my relative lack of decline, I will continue to take it.
Rabeprazole – I had been taking PPIs (proton pump inhibitors) intermittently for years prior to diagnosis. Excess stomach acid and GERD were frequent problems. Since starting on Riluzole though, if I miss even a single day, I suffer the consequences.
Supplements
There is a great deal of controversy over the effectiveness of vitamins and supplements and I personally believe that they are largely unnecessary in normal, healthy individuals who follow a varied and healthy diet. Since the day that I discovered that I was NOT a normal, healthy person, I decided that I would do all that I could to help my body battle this disease. I did a great deal of research before deciding what and in what dosages I would use.
The list is too long to list here but you can find all the information and my evaluations of many of them on my PatientsLikeMe profile. This is also the site where I did much of my research into possible candidates. You can find further information in our Treatments section.
I cannot say for certain that these supplements have slowed my PMA disease progression but I seem to tolerate them and my rate of decline is still in the 90th percentile, so I will keep on keeping on.
Equipment
Again, there are just too many things to fully list here! I am grateful for all the help from the ALS Loan cupboard.
I know that I have been lax in updating this blog as often as I should. There have been significant changes in my PMA disease progression over the last few months. I have tried as far as possible to stay ahead of the curve of progression but have not always been successful.
My trusty AFOs are no longer of any use. Since I can no longer walk without crutches or a rollator, these simply make it harder for me to move my legs at all. They help me to stand upright but actually impede actual movement.
My driver’s licence was pulled by the Ministry (not my doctor) simply because my OT sent in a form stating that I had Lower Motor Neuron Disease (not an official diagnosis).
My falls have been reduced, simply because I no longer attempt to walk hardly at all.
For the first time since 6 months prior to diagnosis, my CK (Creatine Kinase) levels have fallen to within ‘normal limits. If you follow the link above, you will see that high CK levels are associated with better prognoses. I think the levels are lower simply because my activity levels have decreased so much. A year ago, I was still walking 2K to 5K steps a day. For the last couple of months, 500 – 1K is my average. Creatine Kinase is associated with muscle stress and breakdown.
I will try to do better in updating my PMA disease progression in the future.
This was my third time traveling with WestJet with a mobility scooter and the second time, transatlantic. On the whole, they do a good job of making life easier for those with mobility issues. My key piece of advice to avoid damage to your scooter or power wheelchair is to be sure to wait with it until it is completely collapsed and ready for storage in the hold of the aircraft.
My scooter was damaged on 2 of the last 3 flights simply because the baggage handlers did not know how to correctly stow it. Armed with this foreknowledge, I was able to ensure that it arrived safe and sound. Mobility assistance at Ottawa, Halifax and London Gatwick was good and it was a great help having done it before and therefore knowing what to expect and how to avoid potential pitfalls. My key recommendation, if you are traveling alone, as I was, is to check everything possible and keep hand baggage to the minimum. Personally, I need both hands for crutches and/or cane, so my hand luggage must be carried by an assistant. Be aware that almost all airlines now require that any and all lithium batteries must be removed and carried on board.
Arriving in Halifax
On arrival in London, I needed to take a bus to Oxford. When traveling with the National Coach Service, you need to let them know ahead of time if you will need assistance boarding the bus. In the case of the Oxford Bus Lines, every bus has a lift/ramp to avoid climbing the very unfriendly stairs.
Accessibility in Oxford
Although great strides may have been made in recent years, many countries, England/UK included, have a long way to go. Many times, I found myself trapped on a sidewalk with steep curbs that my scooter was unable to navigate, necessitating tiresome detours. Also, many stores, restaurants and cinemas have threshold steps that are not accessibility-friendly.
Lots to see and do in Oxford
To visit the Oxford Botanic Gardens, we had to make a detour of at least 1.5 kms because there is only a single accessible entrance. All the others have either steps or turnstiles that are not friendly to scooters or wheelchairs.
Accessibility in Eastbourne
My next stop was in Eastbourne, in East Sussex on the South coast. Because all of my family’s homes all have accessibility issues, mostly in terms of entrance steps or bathrooms on second floors, I was forced to find an accessible hotel. The only one available, due to an international tennis tournament, The Grande Aparthotel, was not nearly as accessible as claimed. The worst aspect was the steep slope down to reception that would be impossible for many scooters and power wheelchairs. Upon checking out, with my luggage on board, some kind stranger had to give me a push to get me up the hill! In addition, fire doors often made passage through corridors extremely difficult.
Eastbourne pedestrian mall
Eastbourne has some of the same problems as Oxford when it comes to getting around on a scooter or wheelchair, although since it is a somewhat more modern town, more streets, sidewalks and stores are still fairly accessible.
Unfortunately, the reverse is not always true, as I discovered to my detriment today!
Ever since my diagnosis of PMA, I have adopted any tool, device or method that would help mitigate my declining mobility. I recently purchased the mobility scooter pictured above, a Triaxe Sport. It came back from Florida to Ottawa and has already taken a second flight to Windsor, Ontario. It is light (49 lbs without battery), speedy – 21KPH and takes the bumps better than my previous scooter, an eWheels EW07.
Already, I had tipped my previous mobility scooter a couple of times. I believed the new scooter to be much more secure. It has two small outrigger wheels on the front and two more on a bar that CAN be extended at the back. And therein lies the first problem. I did not extend the back wheels today!
Center of gravity is a concept that most of us understand to some degree. It is also a matter of degree. The higher the degree of incline, the greater the likelihood of mishap. I will be the first to admit that I am a person who does not shy away from risk. So, when I saw a path that was interesting, I took it. It was paved, to start with. It wasn’t too steep, to start with.
Well to cut a long story short, I now found myself at the bottom of a steep incline at a point where stone changed to pavement. This transition prevented me from getting a run up to make the hill. From a standstill, I managed to get partway up and then the scooter would go no further. I was leaning forward to put more weight on the front wheel, or else it tends to spin. Once the scooter had stopped moving, I applied the brake and leaned back on the seat.
The Gravity of Wounds or Wounds of Gravity?
That was the tipping point, literally! It happened in slow motion and there was nothing I could do to stop it. Yet again, I am indebted to strangers who got me back up and tended my wounds (pictured).
The same gentleman who unceremoniously hoisted me back to my feet also pushed me up the hill and made sure that I was back on track before leaving. Luckily, nothing was broken. My camera and cellphone survived being thrown to the ground and there was no lasting damage to the scooter. My elbow and right hip will be a reminder of my folly for a while to come.
The Lesson to be Learned?
When I called my wife to related the incident, as she was laughing, she asked: “And what have you learned from this?” I replied: “Absolutely nothing!”.
Will I be more careful (fearful) next time? Probably not! I know my limits and those of the scooter. The real problem is that I don’t like limits and always try to push them. Gravity, however, will not be denied!
You’ve probably heard it a thousand times before: Positive Mental Attitude promotes health and healing! Others call it Mind over matter. To some degree, this is self-explanatory! We are all aware that we can accomplish much more when we are in a positive frame of mind. I was fortunate enough to be introduced to the concept early in my life and have made it one of my guiding principles. In his book, Think and Grow Rich , Napoleon Hill equates the mind to a laser-targeted missile that directs our subconscious mind towards a desired goal. No goal, no progress! A modern day example may well be that of Alex Trebek, who is currently defying the odds and apparently beating Stage 4 Pancreatic Cancer. His disease, like Progressive Muscular Atrophy and other motor neuron diseases is usually considered a death sentence with extremely poor odds of survival. Alex ascribes his remarkable progress to his own positive attitude AND to the prayers and positive thoughts of millions of his fans.
My own case tends to back up this idea too. When I received my initial diagnosis, back in October 2017, I determined that I would do everything in my power to mitigate, if not conquer, this disease. To that end, I have spent countless hours researching ALS, MND and PMA looking at what may have worked for others and devising my own survival plan. In most cases of MND, whether people are fast or slow progressors, the rate of decline tends to be relatively constant. My physiotherapist opined: “History of progression is the best predictor of the future”. How then, do I explain that in my first six months after diagnosis, my ALS-FRS-R score declined by 6 points but in the 14 months since then, I have only lost a single point?
Some might say that it is the actions that I have taken by having mercury amalgams removed, sourcing helpful supplements and naturopathic remedies as well as taking the only officially sanctioned medication Rilutek/Riluzole. Of course, these may well be contributing factors, but, with the exception of the Rilutek, I did these things myself because of my attitude not because of direction from the medical profession. The first and necessary step is taking action. Hoping or Praying for a positive outcome will not likely have any effect without taking positive action towards the desired goal.
Although often overlooked by clinicians, psychosocial factors seem to play an important role in ALS outcome. A longitudinal study has found that patients with psychological distress (measured with a battery of psychological assessment scales evaluating perceived stress, depression, hopelessness, anger expression, and purpose in life) had a 2.24-fold (95% CI 1.08–4.64) increased risk of dying than patients with psychological well-being (53). A longitudinal assessment of mood and self-esteem on survival showed that lower mood predicted a faster progression and a shorter survival (54). However, it is also possible that this effect is related to the fact that low mood is the consequence of having a more rapidly progressive disease. In an analysis of the effect of quality of life (QoL) on outcome, the physical health summary measure of the SF-36 was found to be independently related to outcome, whereas only a trend was found for the mental health summary measure (26). In the same paper, marital status was also shown to be relevant in the outcome of ALS; patients who lived alone had a significantly worse prognosis than patients who were married.
Even if you do not believe in the power of the mind to aid in health and healing, keeping a positive mental attitude has other benefits:
The mood of others is influenced by our own.
Life is more enjoyable when we are enjoying ourselves.
People are drawn to and will strive to help and assist a positive person much more readily than a pessimist.
Being negative will definitely NOT help to improve your situation, so you might as well try to be positive.
You’ve probably heard it a thousand times before: Positive Mental Attitude promotes health and healing! Others call it