When people think “Energy Conservation” they often equate this with something along the lines of “Go Green”. Well I mean something quite different. I’m using this term in relation to ALS.
But first, an update on our move. Well the move is done. It went well however it took two full days and now there’s the unpacking. But we can do that at a more leisure pace. We’re getting the old house ready to sell. Major painting and minor repairs. Plan is to “stage” it for a open house on Saturday August 15th. Wish us luck!
The move has definitely been bittersweet. After all we lived at our old home for 22 years – we raised our son there; we remodeled the house twice, doing most of the work myself; we built a 900 sq-ft shop, again doing most of the work myself – which housed Susannah’s ceramic studio and my wood shop; Susannah created a beautiful garden on our one acre lot. There are lots of wonderful memories.
Truth be told we both cried last night – for a life lost; for me having to give up running and woodworking; for us giving up Airstreaming; for being forced to move; for realizing that most likely I’ll die in the new home. As I said before we don’t get to vote on some parts of our lives. Such is life.
Anyway – back to Energy Conservation.
ALS is an fascinating disease. Although they don’t completely understand the pathophysiology of it they do know what happens. The underlying mechanism is that the motor neurons, which the brain and spinal cord use to tell a muscle to move, start to die. As more and more motor neurons die, it leads to progressive and irreversible muscle weakness.
There are three types of ALS; Sporadic, Familial and Guamanian. Sporadic occurs in 90% to 95% of cases while Familial is about 5% to 10% of cases. Guamanian was seen in the 1950’s in Guam and the Trust Territories of the Pacific. Since I’m not from Guam and I don’t have any other relatives with ALS, I appear to have the Sporadic version. I also started to get symptoms in my 60th year, which is consistent with Sporadic as it typically occurs in the 5th and 6th decades of life. Familial typically occurs much younger.
ALS presents in several different ways. About 75% present with “limb-onset” while most of the remaining have “bulbar-onset”. I had the limb-onset version; my first symptoms were that my left foot started to have difficulties. Bulbar-onset can be very disturbing as it initially affects the throat leading to difficulty swallowing and speaking.
One thing they don’t understand is that different muscles are affected at different rates. Often people have regional areas affected. Initially my left side was exclusively affected. Now my right side is following suit but it’s still much more functional than my left side. I’m also getting bulbar symptoms with my speech already difficult to understand and I choke easily. It won’t be long before I have to use my computer generated voice on my Android.
Anyway back to energy conservation. As an update, currently I can barely walk with a walker and I dare not take a step without holding on to something lest I fall down. I always carry a cell phone with me in case I find myself on the floor and can’t get up (which happened a few months ago). I also have a Medical Alert Wristband which allows me to call EMS Services in case I have an emergency. I jokingly call it my “fitbit”. Here’s a picture of it.
I wear it next to my watch as I don’t have enough dexterity in my left hand to put it on my right wrist. Hence I wear two “watches” on my left arm.
As much as possible I use my cool Permobil M300 electric wheelchair whenever possible – the thing does about everything except load the dishwasher! It turns on a dime; it elevates; it lays back; it goes off road (although without springs or shocks it’s kind of a rock and roll experience); it even goes as fast as I used to run (well almost – it’ll do a 10 minute mile).
I ordered it in dark blue but they gave me one in purple. I thought it was a mistake until my good friend Andrea Keniston pointed out it was a Husky color. They must have figured out I went to the UW! My only complaint is they forgot the gold highlights 😦
As usual I got side tracked again! Energy Conservation – so back to ALS. As I lose motor neurons I have a proportional loss of strength. For example, suppose I’ve lost 50% of my neurons to my quadriceps (your quads are the main muscle you use to stand). That means I’ve lost 50% of my strength to stand up. So instead of lifting 170lbs to stand I’m asking my quads to lift me with only 1/2 the amount of muscle. It would be like me trying to lift twice my weight before I got ALS! (I’m assuming there’s a 1:1 relationship – I suspect that’s an oversimplification but I’ll use it as an illustration). No wonder why I’m so tired at the end of the day!
And interestingly fact about ALS is that exercise does not result in more strength. In fact there’s evidence that exercise can damage the muscles so they don’t want me to do any strength training. Moderate exercise is consider OK but they don’t want me exercising to the point of sore muscles. (My recent Ragnar ride probably wasn’t good but I’d do it again in a heart beat, even if it did take me 4 days to recover).
By far the most difficult thing I do every day is getting off of the toilet. In our old house I had to reach out to grab the doorknob and use it for leverage (grabbing the doorknob is NOT the safest way to rise from a toilet but in our current house I had no choice). However any transfer can be hard.
The two film clips below give you an idea of how much effort was involved in transferring on and off the toilet (I promise it’s G rated). The first clip shows me getting into the bathroom at our old house, while the second shows how I got on and off the toilet.
That was our old house. Our new house is much better.
In ALS there’s is an emphasis on conserving energy. There’s an analogy I’ve heard used in which I’m given only a limited number of marbles in a bowl at the beginning of the day. Then as the day progresses I take marbles out of the bowl; the harder the activity, the more marbles are removed. When the bowl is empty, I’m done for the day. Obviously over time I’ll have less and less marbles to start with.
So the other day I counted the number of times I did a transfer of any kind in our old house. Thirty times in one day. The problem with the old house was that the bathroom, bedroom and my office were not accessible to my wheelchair – I had to use my walker. Again, no wonder why I’m so tired at the end of the day!
We moved to our new house a few days ago. Almost the entire house is accessible to my wheelchair. The number of transfers will go down tremendously. That means less marbles spent on transfers and more spent on enjoyable activities.
The film clip bellow is a quick tour of the new house. If nothing else my bathroom experience is vastly improved!
Rasjad
A Life Beyond Measure 
