I only discovered these air compression leg massager units very recently. Poor blood circulation resulting in swelling and cold feet and legs has been one of the worse symptoms of PMA for me. In the past couple of years, I have tried just about everything from heated socks, heated insoles, hot water bottles, electric blanket, lambswool slippers, etc. Of all the things I have tried, this air compression therapy device has been, without a doubt the most successful.
What causes Swelling (edema) and Cold Feet?
Most of us learn about muscles in biology at school. However, most of us never learn how muscle activity helps to move blood around our bodies. Even my own neurologist was apparently unaware of the severity of these problems for many Motor Neuron Disease sufferers. In fact, he ordered a Doppler (Ultrasound) test of my legs to check for abnormalities other than PMA that might account for it. Lately, I have seen numerous posts from pALS and cALS regarding swelling and lack of temperature control. On further research, I have learned that blood circulation is a major factor in controlling body temperature. Again, most of us are aware that the heart is the major organ that pumps blood. However, in the extremities, there is often not enough blood pressure to recirculate the blood. Normal muscle movement activity then serves to supplement the heart’s efforts. When this fails, blood pools in the feet and lower legs resulting in swelling, discoloration and lack of heat control.
How Does Air Compression Help?
Most of us have had some type of massage at some point in our lives. Indeed, it was prescribed for me by both my GP and my neurologist. However, getting to the RMT office (especially in winter), dressing, undressing, getting on and off the massage table all counterbalanced the positive effects of the treatments themselves. After 4 sessions, I gave up.
Just 20 minutes of sitting with my legs in the air compression leg massager is enough to leave me with benefits for the balance of the day.
Where Can I find one?
Although I had never heard of these devices before, it turns out that they are widely available. They are available with differing sizes, functions and can come with or without the heat function. Prices in Canada range from $90 – $300. The ones I purchased were $159 CAD and have three massage cycles, three levels of compression and two levels of optional heat.
As you have probably surmised by now. I am a great fan of this product. I only wish that I had found it earlier. Of course, your own mileage may vary but my own problems of swelling or cold feet are now largely a thing of the past.
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!
As you have probably surmised by now. I am a great fan of this product. I only wish that I had found it earlier. Of course, your own mileage may vary but my own problems of swelling or cold feet are now largely a thing of the past. 
