lakelover

lakelover

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  • C
    Do you know of the best place for purchasing a used wheelchair lift for a truck? Obviously money is a big issue with us so we are looking for the best deal and of course then we would need to have it installed. My husband is getting very anxious about having his chair with him so we can attend our family gatherings. Any ideas sure would be appreciated and since you live in the same state it makes it that much easier. Thanks a million ...Kathy
    skipper66
    Thinking of you. How are things going for you? My dad is back living here in Illinois in his home about a mile from ours. We have a family friend who moved in with him and is his full-time caregiver. We naturally try to help out as much as we can too. Dad is now losing the strength pretty quickly in his arms and hands and is pretty frustrated with that. But, he seems to still be in good spirits most of the time. My kids are so thrilled that he's home. Take care, Kim
    skipper66
    Hi! How are things going with you? We are waiting to hear if my dad is going to be in a clinical trial. He is supposed to find out this week. I am praying that he gets in it. I'm not sure which trial it is though. I bought tickets for my aunt (dad's sister) and our youngest son to go visit him in Dallas in October. Does your husband take Ritulek? My dad takes it. Take care, Kim
    lakelover
    Hello ECpara, According to the doctors Ralph's progression has been slow until around April of this year.He started progressing really fast. Lost about 80% of his arms and 90% of his hands. His neck is getting weaker. Issues with right leg and foot. Voice is getting weaker. He has lost 20 lbs since April. It is hard to watch someone you love with all your heart wasting away. Ralph takes a while to eat but it's that he can't get his arm up to him mouth. Did you husband get into a clinical trial? Ralph participated in the CK-357. We received a letter last week saying he was taking the 250mg active dosage. He did really well while he is on the drug.I am praying for both you and your husband also.
    E
    Hi Lakelover. How are you all coping? My husband was told his progression is quite slow, which we are thankful. But in little increments I see decline. His speech is very difficult to understand, eating is difficult, lots of choking, but he is determined to keep his weight up and takes forever to eat meals. Taking in two Boost shakes a day. The feeding tube will have to happen soon and he hates the idea. A communication device is in the near future, too. His limbs are still okay but lots of twitching. Bulbar ALS is so different from your husband, but I see them both as just going down different paths to get to the same destination. Heartbreaking. Let me know how you're doing! Prayers for you both!
    skipper66
    Hi Lakelover. How are things going for you lately? I am missing my dad alot since I'm used to seeing him almost everyday. He is staying currently in Dallas right now with my sister and her family. He is getting occupational, speech, and physical therapy 3x's a week right at her house. He just started taking Ritulek this week. He thought he's at least give it a try since he's a veteran and they will pay for it. Hope things are going as good as can be for you. Stay strong! I pray for you and everyone on this site. Kim
    E
    Hi Lakelover. My husband had his appointment at the Duke ALS clinic moved up, went yesterday and he's confirmed ALS. Bummer. Dr. Bedlack and staff were wonderful. My husband has a very positive outlook, even though the prognosis looks so dim. He goes back in March and will be assigned to a research trial, we are grateful for that. He filled his prescription for Rilutek today. Leaning on the Lord at this point, he gives us peace. Blessings to you and yours!
    alador
    Lakelover
    Thanks for your message re: Charlotte Clinic. We were there for two days this week and were very satisfied and impressed with the staff there. Am glad we made the decision to transfer. I know what you mean about the Charlotte traffic. Right now we are dealing with multiple ortho problems not related to the neuro ones.
    I certainly hope the clinical trial can help your husband. Hugs to you and thanks for caring.
    E
    Thanks for responding! I will definitely stay in touch and let you know how Feb. 28th goes. My husband is holding out hope that he has Myasthena Gravis, byt neuro thinks otherwise and from reading symptoms, etc. I'm bracing myself for the worst. My fear is the amount of time he has, Bulbar Onset is quick progressing and he's already had the symptoms since last spring. Unlike your husband, he is still physically okay, he's just having terrible difficulty talking and swallowing. And breathing at night is also hindered a bit. But because he is so physically able, he is in some denial. But I'll let that be until we know for sure. We have to hold on to hope! I will pray for you and your husband, we are of strong faith. Miracles can happen, and at the very least the peace of our Lord can help us through! Blessings to you!
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