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  • Hi Sassy,

    How is your husband and yourself doing? We chatted last spring and you mentioned your husband has flail leg..my dad has flail arm.
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    Mon
    That is fantastic news, im happy to hear. My dad is similiar, still all arms, and they have continued to weaken, however he can still write, eat himself and do most personal care. Hands are definately weaken as well, especially if he over does anything. Legs, breathing and speaking all strong. We are very thankful it is slow as well.
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    sassy
    That's great news.....still sad though- but we are thankful ....
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    Mon
    It is sad but we have to look at it like we are lucky within a unlucky group. After seeing this disease im so grateful dad can walk..talk & breath easy and eat.
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    Reactions: sassy
    Hi Sassy, i hope your husband continues to do as well as can be. We had a brief exchange in regards to your husbands frail leg and my dads frail arm dx. We are in process of getting approved for Radicava, doing a FVC test recently. I dont know many with flail variants through this process
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    Mon
    Thats such great news. Im so glad to hear no progression. My dad is doing okay. The arms have become weaker and a few fingers are involved. Id say its progressed in last 3 months. Its been 2 years since onset. 1st year left arm, 2nd year right arm involved. Id like him to focus on trying to gain some weight but he isnt overly hungry.
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    sassy
    Maintaining the weight is also an issue for us. My husband has to eat thousands of calories a day.
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    Mon
    Ive read a couple sites and on this forum that high calorie smoothies are a good idea. A quick way to consume up too 1000calories if you build a good drink. My Dad thank god has no issues with eating, swallowing or talking but doesnt seem to eat enough.
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    Reactions: sassy
    Hi Sophia -- Thank you for reaching out. I'm so glad your husband is progressing slowly. We are hoping for the same thing and we are starting radicava in Jan. I will reach back out to you soon after the holiday with some questions. I appreciate your offer to help. I wish you and your family a peaceful holiday.
    Dear Sassy - I appreciate your response. In spite of circumstances , it's helpful that his progression is slow. May it continue to be so. May blessings abound.
    My husband was formally diagnosed with ALS in February of 2018, although he has had foot drop for over two years. We have been told his progression is slow and did get a second opinion at a highly regarded ALS center. I think we were both afraid to ask many questions about his progression but are so very, very thankful it appears to be progressing slowly at this time.

    I just wanted to thank everyone on this site for helping us as we lurked over the past year. I continue to be amazed at the knowledge and kindness offered to so many CALS and PALS.
    Sassy
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    Njohn
    Sounds like your husband has some similarities to mine. Mainly in the left leg, left leg very skinny, uses a brace on the left but has exhibited foot drop on his right. He is able to walk without the brace but isn’t stable. He can’t golf anymore because he doesn’t have enough stability for it. Does your husband like the brace he currently uses? I feel for you & hope the best for you and your family.
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    sassy
    He now has an afo on each leg but is still mobile. He felt much more stable once he received the second afo about 6 months ago and had no adjustment period at all. He continues to have extremely slow progression and we remain grateful. Hoping for the best for you and your husband.
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