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Thank you for letting me join
My husband is a 73 yr old Vietnam vet. We have been through skin cancers, prostate cancer and he survived. He was strong, on no medications everything was great. We headed toward Florida for the winter the 1st of November. He started complaining that he was weak. In February he started slurring his words. We went to the hospital thinking it was a stroke. They did a bunch of tests and everything was fine, not a stroke. That’s when they noticed his nerves jumping and suggested ALS. Coronavirus came along and we had a fight trying to get a neurologist test. Finally in May we found a Dr. that would see us and said it was ALS. Tonight he is having a sleep study. We’re waiting to hear from the V.A. They say this is caused from Agent Orange. Still so many roadblocks because of coronavirus. Please keep us in your prayers.
Diana
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4 Replies
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Diana – – we welcome you and your husband 🙂 I am sorry that ALS is the cause for you to join our community, but know that you will find us supportive and helpful. There are many topics here; both in the Caregivers forum and the Living with ALS forum.
I recently listened to an excellent webinar that interviewed Ed Rapp, who started AnswerALS.org. He was diagnosed 5 years ago, and has become involved with facilitating research into ALS. But, in this webinar, he gave one of the best, thorough and up-to-date explanations I’ve heard yet – – from the cause of ALS, to different types of ALS, to current treatments and how long before a cure.
Please feel free to ask us questions or make suggestions for topics that are important to you.
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Diana, my husband is a veteran as well but was fortunate enough to not see combat. He started slurring his words in early October and because he is 100% disabled through the VA, he is dealing with their health care. It took until February for him to finally get to see a neurologist, who ordered all the tests. As with you, then Corona virus hit and he was left to his own devices until we traveled to Pennsylvania (from Florida) and was diagnosed here. His speech is almost non recognizable but he is not showing too many other symptoms, but he too gets tired easily. I guess what I wanted to add was that he was never exposed to Agent Orange so the only common denominator is their service to this country. I am sorry you and your husband are traveling the same path as we are. Prayers for you both.
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My husband really wonders if it came from agent orange or the vaccines that they were given. Rich wasn’t in the jungle he worked on helicopters. Rich can still speak and walk well. Everyday he wakes up as good as the day before is a blessing.
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Hi Diana
I too am a Vet and I have found my VA to be an amazing resource for anything I have needed so far. A good advocate can really help expedite the paperwork process for getting approved for benefits. ALS is considered “service connected” so it means 100% disability benefits. I wish I didn’t have use them but I am so grateful the VA steps up to provide benefits. I too wondered if it was something in the immunizations we were given. I doubt we’ll ever know.
God Bless and prayers for both of you.
Jerry (from Kansas)
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I am more inclined to think it has something to do with the vaccines they were given, simply because it does not seem to make a difference what branch a veteran served in. Randy’s speech has really declined in the last several months to the point where he struggles just to get enough air out to make sounds. I am trying to get him to use his text to speech program but he says it takes to long. I miss the sound of his voice….even when he would be upset with me. I just hope he doesn’t lose the ability to be mobile as fast as the speech. PS – he is 63 years old.
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