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Living Longer with ALS
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Reading everyone’s thoughts here, and what you all feel and go through, is such a support to me, I can’t say thanks enough 🙂
I agree wholeheartedly with trying to have a positive outlook, maintaining a sense of humor, holding onto faith, as well as being grateful for those who love us and will be there for us, as time passes. I feel incredibly fortunate to have 10 siblings, all living in other states, yet each stays in closer touch by phone. They are my lifeline, as well as a few caring friends, and my ALS Team, who is wonderful. Of course I have days where the tears come, but it’s when I can’t hide the fact that I may not see my 3 grandchildren grow up, and I’ll not be a part of my children’s lives. My husband is strong, not one to worry, but he is already worn out. I feel so responsible for how he feels, and there is nothing I can do about that, other than let him know daily how appreciative I am. It helps me so much to read what each of you do, to stay positive and look for the bright side of things. I make it a point, to focus on the good, as there is so much good in my life. When I do that, keeping my thoughts on all that I have, I feel so happy and thankful. It’s not easy at times, but I’ll continue to try my best, and please know that each of you help me so very much! We truly are “all in this together”!
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Hi Ginger,
Thank you for your post. That’s wonderful that you are still able to do a lot of activities and that you have family and friends for help and support. I admit I have not been coping with my ALS diagnosis very well and have often been very depressed about it. It’s something that’s hard to accept but we really have no choice about it. We just have to accept it and get support from others when we need it. Thank you again and best wishes to you.
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As I approach my one year anniversary diagnosis after over a year of symptoms, I agree with Dagmar’s and others approach here. I have broad symptoms, speech, breathing, hand weakness, and overall balance issues when walking. For each of these, I have accommodations so I can still handle most of my life activities independently. In the last 6 months, nothing has progressed and some symptoms have decreased a bit particularly my breathing after I got my bipap. I am in the Healy Platform trial. For me good food, an exercise routine I do daily, deep spirituality (praying) and great support from my partner, family and friends have made a big difference. I try to enjoy every day I have.
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