I have described those times where I wake up feeling substantially weaker. I call it 'the slide' because the day before it happens 'life is good' and everything seems to be going along just fine. Then I wake up and find it difficult to do almost anything. I never know how long I will be in the weaker state or if I will ever come out of it feeling stronger again.
I call the 'life is good' period 'the plateau'. It seems like my strength level has stabilized and I am more comfortable with my current capabilities.
'The slide' period is a difficult period for me both physically and emotionally. My muscles ache, my daily exercises are more difficult to perform, I just do not have the energy I normally have, just getting up and moving around is more difficult, and I can sense a new weakness that was not there before. As depicted in the picture above, the emotional aspect of 'the slide' is difficult. I do not know when I will reach the next plateau (when the slide will end) or where I will end up strength-wise. Fortunately, the plateaus last a lot longer than the slides. This break allows me to become comfortable with my new level of capabilities. Often, through focused exercise, I can come back a little.
As I become older, the slides seem to be less frequent, but more noticeable. When I was younger, the slides often occurred after over-doing it (I worked, exercised, or played too hard). Often after these events, I would have to rest for a day or more to recover. Since I am now substantially weaker, I believe the slides are more noticeable because of my current level of strength.
When I saw my neurologist last May and explained my most recent slide, he commented that he had never heard of something like this before. He questioned whether I was just having some emotional issues that were causing the physical symptoms. I convinced him that what I was experiencing was real and nothing to do with anxiety or depression. He then wanted to hear more about it. I promised to let him know the next time a slide occurs. He is a great doctor who listens and learns from my experiences.
This last Sunday was a good, normal day for me. Monday morning, I noticed that I was having difficulty with some of my exercises. Monday evening I was having difficulty standing up from my chair. This morning I was struggling to stand up and did not feel safe when standing for long. Is it the beginning of a slide? I hope not.
I would be interested to know if I am the only one that experiences these moments (then I would think it was psychosomatic) when you wake up weaker one day and struggle with the weakened state for several days.
No, you are not the only one that experiences the sudden changes in your physical abilities. I think you have hit it on the head.
ReplyDeleteI have experienced the "slide" a few times over the years too. For me, it felt more like a sudden drop rather than a gradual change. The plateaus have been longer in between though. I guess that is typical for those of us with Kennedy's. The symptoms and the decline seems to vary from person to person.
When I explained this to my doctors, I was met with disbelief as well. Doctors must be under the impression that the decline is gradual and barely perceptible - for whatever reason - and so they do not readily believe it when we tell them there are sudden and drastically noticeable changes.
Stan, thanks for the response. It is always good to not feel like you are the only one out there that this happens to them. I agree that our doctors might not have had this "experience" explained to them before.
ReplyDeleteI originally named this experience "the slide" because I never knew where I was going to end up when it was over with.