Soon after my ALS diagnosis in December 2007, I created a log for tracking the progression of symptoms. It has been challenging as my symptoms, fortunately, do not noticeably change from day to day. The changes are more noticeable from month to month, The lack of noticeable change has lead to some delusional thinking at times, speculating that perhaps I had a very slow progression form of ALS and could live many years. I am brought back to reality when I consider the initial monthly lung capacity tests that consistently showed a four percent monthly decrease. As of August 2008, I was at just under 50% of normal capacity and was already at a level that could be problematic. The 30% level is when breathing assistance is generally required. Projecting the monthly drop then suggested that by December of 2008, my breathing will be challenged to the extent that I will need assistance in the form of a bipap, positive pressure breathing assistance, possibly followed by a tracheotomy.
In looking back, I was aware of loss of strength in my legs in the spring of ’07 as well as some shortness of breath. By fall ’07, I was aware that there was continued loss of strength in my legs and greater shortness of breath. By winter, January ’08, it was clear that there had been a slow continuous loss of strength mostly in my legs. A series of four falls occurred over the next two months. By late spring ’08, I was aware that my leg weakness had reached a new low and I experienced a couple of falls, one trying to go up steps. I also often needed help getting up from chairs. I obtained a riding scooter in April ’08 that was a wonderful asset. By summer ’08, it was clear that my leg strength had further deteriorated and during the summer the weakness reached a level that I needed assistance getting up from a sitting position at almost any level. I began using a cane. It was during the summer that I began to recognize a loss of strength in my fingers that prevented me from turning light switches.
September ‘08 – I have been most frustrated by my continual loss of strength in my legs, as well as a slight loss of strength in my fingers. Finding elevated chairs has become a task I have assumed whenever I go into a room where I plan to sit down. The alternative is to take cushions/pillows with me to elevate the height of the chair. A few months ago, I needed to make sure there were arms on the chairs so I could push myself to a standing position. A combination of chair arms and elevation works best. When all else fails, hoisting me by my gate belt works. A cane as well as an arm to hold on to has become standard protocol when walking outside. We are using a wheelchair more often when I am in public places.
October ‘08 – It has been 10 months since I learned that I had ALS. The degeneration has been slow, but noticeable. The loss of breathing capacity has been the most frightening, The breathing test this past month was the first time since we began measuring lung capacity that it did not decrease. I was delighted, but realized that it could be just the variation in monthly measurements. Or, perhaps the lithium was making a difference. If it was, the difference was only in stabilizing the breathing because I was aware of a continual degeneration of leg and finger strength.
On October 7th, a trip to Rhode Island was quite an adventure. Two falls going up steps set me back considerably. I went to a walker for greater stability and spent much of my time there in a wheelchair. I was gratified by support from my fellow high school classmates and my extended family.
On October 23rd, my breathing tests seem to have stabilized, similar to the previous month’s results. Although I experienced my breathing capacity as stabilized, other muscles in my extremities seem to continue to degenerate, including dexterity in my fingers. I think that was scarier than losing strength in my legs.
Each time I go to an appointment with my neurologist or my pulmonologist I am asked if I am having difficulty swallowing. Fortunately, I have been able to say that has not shown up YET. The question comes to me as a foreboding prognosis. I watched myself progressively lose the ability to get up from the ground, to walk normally, to lose balance, to get up from chairs and the toilet over the course of a year and a half. More recently, I have begun to be aware of the loss of strength in my fingers, resulting in difficulty taking caps off of the toothpaste and other containers, followed by difficulty in writing legibly. The deterioration is slow but ongoing.
I find myself occasionally grasping at the possibility that Lithium, an experimental treatment I was taking, may be making a difference. My loss of breathing stabilized in the month following when I began taking it. However, I have continued to experience deterioration in the strength of my extremities, so I am not expecting any miracles. The best I can hope for is prolonging the vital functions as long as possible. In my October ’08 visit with my neurologist and pulmonologist, they could not measure any changes since the previous month, which also indicated that I might be experiencing a plateau which I understand is not uncommon with ALS.
Meeting with the ALS Team at Virginia Mason was illuminating. Dr. Ravits was quite negative about any Lithium effect. Instead, he associated the breathing stabilization with the use of the bipap at night. Breathing tests in a prone position revealed what I already knew – that it was much lower, e.g. 37 vs. 52. This data brought to the forefront the decision of whether to have a stomach tube inserted. I had hoped to put that decision off, but if my breathing decreased further, it would be more risky. I was inclined to not go with the procedure and an estimate by Dr. Ravits that the chance I would need a stomach tube was only 10% reinforced that decision.
At the end of December ‘08, I had another fall. Nancy insisted on calling 911 – a new and positive encounter with EMT’s. It was a traumatic experience with severe pain in my right ankle, which soon decreased with ice and rest. I was stressed the rest of the evening. I was reluctant to use the walker the next morning but over the next few days regained my confidence, but used my walker with even greater caution, relying more on the power chair. I realize that my fear factor escalates each time I fall.
At the end of February ‘09, I had another fall and the consequences were a broken right ankle and increased fear about falling. The boot I wore while the bones healed, was heavy, cumbersome and made walking impossible. I don’t know how much fear factored into my thoughts, but I was not planning on doing much walking in the future.
In May’09, although my ankle was healed, I was being transported from the bed to the power chair, back into bed, or sometimes into the elevating chair. Walking was no longer a consideration. However, spending all my time in the chair or bed presented a new set of challenges. Relieving the discomfort of sitting or sleeping in one position was not easy. I can recline the chair and shift the focus of pressure. The only other relief I have found is to have someone exercise my legs, one at a time. Nighttime has been more problematic. Since spring of ’09 I have not been able to turn in bed. As I sleep on my side, my hip joints would ache and someone would have to turn me about every hour. This posed a serious problem. I tried various pain relievers and sleeping pills without much relief. We began considering mechanical devices to turn me, or creating a schedule of persons who could come and relieve Nancy at night.
In August ‘09, I decided to work on a new way of sleeping. After a few nights of forcing myself to sleep on my back, along with the help of some sleep medicine, I succeeded in overcoming a 70 year pattern. With a hospital bed that allows me to elevate my legs and sleep in a reclined position, I am now able to sleep through the night
June’09 – My hands are basically useless. I use my thumbs to hunt and peck on the computer. Breathing has become more difficult, particularly in the evening. I use the bipap machine more frequently in the evening. The visiting nurse asked me the disturbing question last week of how I plan to communicate when I can no longer talk. It seemed premature to me but that may be my state of denial. However, I am still singing and with gusto. I just have to take two to three times as many breaths.
September ’09 – It has been 19 months since I received my diagnosis, and almost three years since I have been experiencing weakening of my muscles. I no longer have the use of my legs and limited use of my hands. I am consulting with a speech therapist in preparation for communicating when I can no longer talk. It has been a journey of detachment from what I could once do along with anticipation and preparation for what I won’t be able to do in the near future. I will share my interior reflections of the journey later.