machaffi
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  • Just dropped by to say Hi! How are things going for you. My dad who is 79 is doing pretty well considering having ALS. He can still eat on his own. His breathing so far is good. He can only walk short distances using a walker and someone holding onto his gait belt. His voice is sometimes hard to understand but is still pretty good. He can't do anything really for himself. He has started shaving himself with a electric razor. He is in the clinical trial of the drug Acthar but he doesn't feel it is really helping any. But, he has progressed any farther though while on it. Take care, Kim
    Hello and thank you for the greetings! I hope you are well... considering. May the blessings ( seen and unseen) of Easter bring you all you've been hoping for.
    So - you may have great news on the 15th! Here's praying. I'm Ok - considering. Ha! Leaving on a bucket list trip on Friday - In fact was just on hold with airlines for 1/2 hr - decided to order a wheelchair... just in case. I figure I can refuse it if I don't need it. It's the LONG distances at Heathrow that got me thinking... That will be a first (if you don't count traveling with a leg cast once).
    Wishing you well on 15th, and I'll check back after 25th when we get back. Take care! Stay positive.
    Hope your appointment goes OK. My first visit to the clinic (Sept. 17) was quite emotional for me - but I did feel better afterwards. I feel safer somehow knowing so many people are there for me and my family. It's a challenge to be sure! Let me know how it goes for you. I've got the hand thing going on too- so I understand.
    My dad was just diagnosed with ALS in May so I still don't know enough about it to lend advice. But, if you'd like a friend I'm here. They are making alot of progress in ALS and new promising trial are supposed to be coming out the first of the year according to the ALS clinic my dad attends in Dallas. We are here to support you and your family. Stay strong! We all care and understand. Sending you a hug. Kim
    Hey. I'm very sorry about your dx. Have you appled for SSDI and Medicare? If you wife has questions, let me know. Good luck to you. CJ
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