Since this fall, I have been very tentative to attempt walking without my Walker. Even with the Walker, it feels as though both my strength and stamina have decreased significantly. I assume that this is both partly mental and physical since each fall does cause me to lose a little bit of confidence but also takes a physical toll on me. At the rate that I am progressing, I would estimate that I would almost be fully wheelchair-bound within the next three months.
There is some good news out of all of this. As I mentioned at the beginning, both my breathing and swallowing appeared to be normal, although I have begun to experience shortness of breath with almost all physical activity. Also, I believe I have detected some slight slurring of words, although nobody else has or will confirm that. Even though people may not be able to hear it, I know I am starting to struggle with saying certain words. It is therefore something I'll have to keep an eye on.
Over the past several years, my weight has remained somewhat consistent. Over the last six months, however, I have lost 11 pounds. That may not seem like a lot, but when you think about it, it has obviously not been through exercise. Weight has always been something my clinical team is concerned about, and they have always encouraged me to try and keep my weight up. A recent study of over 400 ALS patients conducted at Massachusetts General Hospital (MGH) found that those who were mildly obese survived longer than patients who were normal weight, underweight or even overweight. "We have long known that being underweight shortens survival for ALS patients, and several studies in an animal model have shown that weight gain is associated with increased survival," says Anne-Marie Wills, MD, MPH, of the MGH Neurology Clinical Trials Unit, senior author of the report. "Our study was designed to investigate how cholesterol levels affect survival. We were surprised to find that body mass index or BMI – a measure of weight adjusted for height – made a large difference in survival. Patients with a BMI of 30 to 35, who would be considered mildly clinically obese, lived the longest; and patients who were overweight, with a BMI of 25 to 30, lived the second longest." For better or for worse, my current BMI places me in the "overweight" category. I guess I have some eating to do. This is also why my clinical team at the University of Pennsylvania hospital has been urging me to quit my job for the last three years and just sit on my couch and eat potato chips and drink milkshakes.
My Functional Vital Capacity (FVC), which is a measure of my ability to breathe, was slightly down at my last clinic visit, although it was still well within normal range. According to my neurologist and the pulmonary specialist, the drop in score was insignificant. Insignificant to them, of course, because they don't have ALS. As my stomach muscles weaken, which is evident by the fact that I can no longer do certain things, it is expected that my breathing will become more difficult. Typically, the first sign of breathing distress usually occurs at night while you are laying down. Luckily for me, this has not been a problem and my FVC score while lying down is almost identical to my score in a seated position, which is unusual, even for a healthy person.
Several things that I am unable to do at this point, that I was able to do 3 to 6 months ago, includes: sitting up in bed, getting out of bed, getting up from a seated position, showering, getting dressed, brushing my teeth, shaving, drinking without a straw and driving. It has now been almost 6 weeks since I had last driven a car. Not that I still couldn't, but it would probably require me to expend a lot of physical energy to do so. Besides, I would be unable to get up out of the car without assistance, and even if I could, I would be so thoroughly exhausted, that I would probably take one or two steps and then be on the ground. Therefore, Tracey has been driving me to work every morning, and picking me up almost every afternoon. Several coworkers have graciously provided me with a ride home on occasion.
|Trying to walk without my braces or Walker.|
|Dressed up for a night out on the town!|