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  • Hi Beebe. I am so thankful that it isn't ALS. My husband is still struggling. He has a lot of pain and stiffness. The muscle cramps are really bad. He gets them all over. The more physical he is the worse it is. The muscle wasting he has is from focal myopathy. (ulnar nerve and carpal tunnel in both arms and hands) The muscle wasting seems to have stopped since the surgeries. It did not improve his dexterity though. He struggles at work. I just wish he had insurance to get the test for sleep apnea. He has such a hard time sleeping. He has to have a fan right in front of his face or he keeps gasping for air. Please let me know how things are with Stephanie when you can. I will always appreciate the time you both took to answer my questions. Your family has been through so much. It must be so hard on the kids. God bless all of you. Take care, Jenny
    Hi Jenny, How nice to hear from you.Your husband finally got a dx. Not ALS!!! How does his disease effect his functioning??? Jack is at peace and so are we. This past year was the worst. Stephanie is still going, she's a fighter. Keep in touch. Fondly, Beebe
    Hi Beebe,
    I haven't been on the website much. I'm so sorry to hear about Jack's passing and Stephanie's health. My prayers and thoughts are with you and your family. My husband was diagnosed with benign fasiculation cramp disorder. He was laid off and lost health insurance. The doctor suspects sleep apnea but without insurance he can't have the test done. It was good to hear from you. My heart breaks for everyone still trying to find answers and who are living with this terrible disease. I hope you are doing well. Take care, Jenny
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