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  • Hi Nancy,
    I'm so sorry for your need to be here, but here we all are. My mom is bulbar-onset, so right now prob not many similarities to your husband. She was diagnosed at the Cleveland Clinic, and then a second opinion from Dr. Lacomis in Oakland. We have not gone back for any clinics because we really didn't see the need. With your husband being younger however, that might be right for you. This is all so new for you and it is very difficult to reach a place of acceptance. I'm glad you found this forum - it has been a great source of support for me this past year. Thanx for reaching out and keep in touch. Remember to take things day by day, that's all I can do most of the time.
    Feel free to ask anything you need to. You cannot ask any question that would be insensitive, prying or off-limits. I have been on this journey for 2.5 years and while I don't know it all, I have learned much about myself, ALS and living through the storm.
    I had my quarterly appointment yesterday and most of my "numbers" declined since the last visit. I spent about 10 minutes being disappointed, but am grateful that I can still do much more than others who were diagnosed at the time I was. You and your husband will find that you are able to adjust to whatever your new "normal" becomes.
    Oh-- if you have any questions for my wife (a super caregiver), feel free to ask those as well. She has been amazing through all of this, and I can assure you that when it began she was in the exact place you are now!
    Nancy, I don't know much but I totally understand the shock of this disease, no one in my family has had this, this time last yeat I didn't know what ALS was, if there is a bright side, it has brought my family closer, people who I didn't think cared are there for me. Email anytime, you are in my prayers.
    I thought I left a message here for you already, but I don't see it, and of course I don't have a clue what I said. But I do want to welcome you, and encourage you to ask as many questions as you need to. This is a great community of people, and they are very supportive and have some really good answers as well. My husband was diagnosed July/12 one year after we were married. He has moved to Canada as we had planned, and is someone I am proud to call my husband. His faith is unshakable, and has a smile that won't quit. He has such a great sense of humour, one of the reasons I fell in love with him, and we joke back and forth most of the time. It will take a bit of time, but you will get into the routine of things, and then fall out of the routine, and get back on it again. You are in my prayers.

    You are in my prayers. Would your PALS possibly benfit from drinking Ensure or Boost? Just a suggestion. Kim
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