I write seemingly endless posts extolling the virtues of a positive attitude, lamenting the time lost agonizing over the finite diagnosis and its effects on my mind and describing the various game plans designed to deal with my disease- fight, sidestep, walk away, pray, eat better, focus, meditate, deny, ignore, study, communicate, exercise.
Meanwhile, ALS continues forward with its game plan. It continues to consume me. I really have no way to determine whether all I have tried has produced any effect at all. Whether the sickness has been hampered or accelerated is anybody's guess. I just hope that I never get to the point where it comes down to "Woulda, Coulda, Shoulda". Sometimes I feel like I'm throwing water on an electrical fire.
I continue to hold on to all the positive aspects of life- even mine- and look forward to Dallas, Thanksgiving, Florida, Christmas, Dallas and beyond, doing so without drugs to carry me through each day and night. I must deal with each setback as it comes, but I cannot avoid looking toward a future infiltrated with dysfunction. Case in point: Last January/February, before my diagnosis, my left hand and arm began showing signs of a problem. I saw the fasciculations and thought they were related to a pinched nerve or something of that sort. My ability to swing a hammer had already been hampered, and I began to drop things. A pencil, a piece of wood, a cereal bowl................on occasion, I had episodes of what I would call "muscle lock down"- a cramping or tightening of my tendons or muscles in my forearm, tricep or bicep, my thumb, my wrist. Of course, after March 15, I discovered the real culprit. Throughout the ensuing months, my left has lost most of its strength, dexterity and flexibility. My shoulder, already painful due to years of stress, now makes it difficult to sleep as the disease digests my muscle mass, putting forward and downward pressure on my shoulder as my arm weakens. Meanwhile, my right arm has taken over as the Alpha (oh, yeah, I used to be left handed) and I use it for everything. Unfortunately, the ALS has discovered my right arm. I've been aware of this for some time, always trying to will it to be "not so", to no avail. I'm dropping things with my right now, my strength is waning some and the cramping and quaking (did I tell you my left hand quaked? I didn't think so. It quaked) occurs on occasion. If I repeat the time line of my left, I can project that both arms will be significantly weakened by spring. I need it to be known that my left, even in its diminished capacity, is not a useless limb of meat. I can swing it, move it, hold light weight items and pet a dog. The peculiar aspects of this growing paralysis are many: I can't straighten my fingers without pain. I can't wave to you. I can't retrieve my wallet or slip my left hand into a front pocket. My sense of touch is strange. Smooth surfaces feel rough. My left arm and hand are slow moving. I can't eat, write, hold a glass (even if I could, I am not able to turn my wrist to bring the glass to my mouth) or page through a book or newspaper. Thank God for Kindle.
I'm beginning a new phase these days, focusing primarily on active, physical remedies, having exhausted myself exhausting the use of mind/body techniques. This in no way means I'm done with mind/body. I continue to meditate, self hypnotise and study the methodology of continuing mental health. Otherwise, I couldn't function with any degree of sanity. I just need to support my negotiations with ALS by bringing in the heavy artillery.
Meanwhile, ALS continues forward with its game plan. It continues to consume me. I really have no way to determine whether all I have tried has produced any effect at all. Whether the sickness has been hampered or accelerated is anybody's guess. I just hope that I never get to the point where it comes down to "Woulda, Coulda, Shoulda". Sometimes I feel like I'm throwing water on an electrical fire.
I continue to hold on to all the positive aspects of life- even mine- and look forward to Dallas, Thanksgiving, Florida, Christmas, Dallas and beyond, doing so without drugs to carry me through each day and night. I must deal with each setback as it comes, but I cannot avoid looking toward a future infiltrated with dysfunction. Case in point: Last January/February, before my diagnosis, my left hand and arm began showing signs of a problem. I saw the fasciculations and thought they were related to a pinched nerve or something of that sort. My ability to swing a hammer had already been hampered, and I began to drop things. A pencil, a piece of wood, a cereal bowl................on occasion, I had episodes of what I would call "muscle lock down"- a cramping or tightening of my tendons or muscles in my forearm, tricep or bicep, my thumb, my wrist. Of course, after March 15, I discovered the real culprit. Throughout the ensuing months, my left has lost most of its strength, dexterity and flexibility. My shoulder, already painful due to years of stress, now makes it difficult to sleep as the disease digests my muscle mass, putting forward and downward pressure on my shoulder as my arm weakens. Meanwhile, my right arm has taken over as the Alpha (oh, yeah, I used to be left handed) and I use it for everything. Unfortunately, the ALS has discovered my right arm. I've been aware of this for some time, always trying to will it to be "not so", to no avail. I'm dropping things with my right now, my strength is waning some and the cramping and quaking (did I tell you my left hand quaked? I didn't think so. It quaked) occurs on occasion. If I repeat the time line of my left, I can project that both arms will be significantly weakened by spring. I need it to be known that my left, even in its diminished capacity, is not a useless limb of meat. I can swing it, move it, hold light weight items and pet a dog. The peculiar aspects of this growing paralysis are many: I can't straighten my fingers without pain. I can't wave to you. I can't retrieve my wallet or slip my left hand into a front pocket. My sense of touch is strange. Smooth surfaces feel rough. My left arm and hand are slow moving. I can't eat, write, hold a glass (even if I could, I am not able to turn my wrist to bring the glass to my mouth) or page through a book or newspaper. Thank God for Kindle.
I'm beginning a new phase these days, focusing primarily on active, physical remedies, having exhausted myself exhausting the use of mind/body techniques. This in no way means I'm done with mind/body. I continue to meditate, self hypnotise and study the methodology of continuing mental health. Otherwise, I couldn't function with any degree of sanity. I just need to support my negotiations with ALS by bringing in the heavy artillery.
I just wanted you to know I am praying for you:) ~ Judy
ReplyDeleteI just want you to know I will help in ANY way to help try to maintain some of your muscle tone,I'll talk to my Daughter for ideas. in the meantime 'go nuclear!!!"
ReplyDelete