First, let me thank those who have been kind enough to send me emails and the others who have responded to my queries. I don't feel alone.
I tought I would update you on my situation and ask for suggestions as to who to talk to first. Besides the symptoms, which I have described before: asymmetrical weakness (mostly right side), fasciculations (mostly on the right side), atrophy, stiffness, muscle fatigue etc., I am now experiencing some throat difficulties. I am starting to experience some swallowing issues, I have noticed that I experience some minor pain when I swallow and also dull sensations of pain in the throat area. I reads on another site that pain when swallowing could also be associated with bulbar involved ALS. I am now sensing twitches on my face (neck, cheeks, lips). What's next, the tongue? Is it true that tongue fasciculations are a certain sign of ALS?
I am finding it difficult to carry on daily activites. I can't even comb my hair without experiencing the fatigue on my arm and I have to stop before I can go on. Just the act of moving a cart with a TV and VCR from one room to another exhausts me! Since I live alone, I feel as though I am looking at the future and it does not look good.
My primary question is who to talk to who will have the most information about ALS and what I need to do in order to prepare for the worst. Other questions are financial in nature ( as you know I am responsible for financial support for my ex and my daughter and they rely on these monies for their survival). Some questions are more personal, how does an ALS patient manage when they live alone? I have called the local representative for the ALS support group here in Eastern Washington. Is this the best contact? Are there others I need to talk to? Ideally, I want to minimize the number of people I need to talk to because I am experiencing extreme fatigue on a daily basis and I seem to have only enough energy to do so much. Thank you for your caring.
I tought I would update you on my situation and ask for suggestions as to who to talk to first. Besides the symptoms, which I have described before: asymmetrical weakness (mostly right side), fasciculations (mostly on the right side), atrophy, stiffness, muscle fatigue etc., I am now experiencing some throat difficulties. I am starting to experience some swallowing issues, I have noticed that I experience some minor pain when I swallow and also dull sensations of pain in the throat area. I reads on another site that pain when swallowing could also be associated with bulbar involved ALS. I am now sensing twitches on my face (neck, cheeks, lips). What's next, the tongue? Is it true that tongue fasciculations are a certain sign of ALS?
I am finding it difficult to carry on daily activites. I can't even comb my hair without experiencing the fatigue on my arm and I have to stop before I can go on. Just the act of moving a cart with a TV and VCR from one room to another exhausts me! Since I live alone, I feel as though I am looking at the future and it does not look good.
My primary question is who to talk to who will have the most information about ALS and what I need to do in order to prepare for the worst. Other questions are financial in nature ( as you know I am responsible for financial support for my ex and my daughter and they rely on these monies for their survival). Some questions are more personal, how does an ALS patient manage when they live alone? I have called the local representative for the ALS support group here in Eastern Washington. Is this the best contact? Are there others I need to talk to? Ideally, I want to minimize the number of people I need to talk to because I am experiencing extreme fatigue on a daily basis and I seem to have only enough energy to do so much. Thank you for your caring.