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  • Be well Tim. My husband is hanging in. His breathing capacity is 30%, and he is on hospice. On his trilogy 20 hours a day, but he has no pain and can eat and walk short distances with walker. He takes riluzole and protein shakes. Also on lorazepam and morphine as needed, to help breathing. He can’t do any weight exercises or bike anymore. It has been 24 months since his co2 levels increased, meaning his diaphragm started declining. Day at a time. Be well.
    Hello, I wanted to give you an update. After a muscle biopsy it's been confirmed i do have ALS. To this day my breathing is still at 61% and my chest muscles are affected. I've retired from work and start Medicare in March. I do have a lot of fatigue because of my breathing. So frustrating. Those of us with respiratory onset are rare from what I understand

    Have you looked into DPS for your husband. I'm in the process of learning more. Is he taking meds or supplements?

    Take care and you guys are not alone.

    Tim
    Wow! Sounds like good news for you! Sorry I didn't respond sooner. My husband has confirmed als as of several weeks ago. His breathing is his worst symptom but bipap is his savior. He uses it at night and sometimes for an hour in afternoon. His muscles are shriveling but we try very hard to maintain his weight. He lost 30 pounds over last 18 months. He can do little because his diaphragm doesn't work well. He has no bulbar issues and can drive car. Respiratory onset is so rare, we have no idea what to expect, but hope he can keep his current body strength. How are you doing? Again, sorry for delay. Missed your message.
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