Recent content by rmt

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    CALS Roll Call Continued

    Mary, I know what you mean about the house being lonely. My husband hasn't been able to speak for almost 2 years. I miss the chatty banter so much! We would talk constantly from the minute he got home from work until we fell asleep. I did more of the actually talking but he was always so...
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    Dot's thread

    Sorry to welcome you here. But I'm glad you found this forum. The people here are very knowledgeable and so supportive! To should be able to find a small white board on Amazon or at a drugstore or Walmart or Target, etc. My husband can't speak anymore and we have small white boards in every...
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    CALS Roll Call Continued

    V, after so long, you must be so worn out. Sending hugs to you. Mary, I'm sorry the wedding is becoming such a stressful challenge. I hope you can find a way to make things work for you. Things are actually going pretty well for us right now (I really hope saying that doesn't jinx us!). We...
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    Bulbar ALS - Second Opinion

    ColleenMarie, our house is not conducive to loss of mobility either. It is so hard to know when it will be time to figure something out in our current home or think about moving. My husband did some physical therapy exercises for his face and speech for a while, but he doesn't do them anymore...
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    Bulbar ALS - Second Opinion

    First, I'm so sorry you are here. But I'm glad you found this forum. It has been so helpful for me. Honestly, we still don't have a prognosis! It really is wait and see what happens next. Even the ALS specialist (who is excellent and we love) has no idea what to expect. The first ALS...
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    Bulbar ALS - Second Opinion

    You sound similar to my husband. We are 3.5 years into symptoms currently and he has an Bulbar ALS/PLS diagnosis. His EMGs have been clean so far and he has no muscle wasting so far. We will have another EMG this spring/summer to see if it is PLS or ALS. He started with progressive dysarthria...
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    VA Veterans Caregiver Program

    Thanks Missy! The Oregon PVA was really helpful in getting my husband his benefits. I'll give them a call to see about getting the Caregiver benefits going! Thanks for the idea!
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    VA Veterans Caregiver Program

    That's great to hear it was useful! I sent in our application on Friday so hopefully the process will go smoothly.
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    VA Veterans Caregiver Program

    Thanks!
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    VA Veterans Caregiver Program

    Are any of you using the VA Veterans Caregiver Program? My PALS is a veteran was active duty during the eligibility window. He is starting to require more care and I think we would qualify for the program. It sounds like it provides some very useful things for CALS and possibly a monthly...
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    My husband is dying....

    K, if your husband is a veteran, his ALS is considered 100% service connected and he is eligible for MANY benefits. Our local Paralyzed Veterans Association helped us get all the paperwork in and my husband gets all his ALS care from the local VA for free. All his tube feeding food is covered...
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    My husband is dying....

    I'm so sorry to welcome you here but I'm glad you found us. This forum has helped me tremendously. Antidepressants have helped me, as has finding people to talk to that understand exactly what you are feeling. You are not alone.
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    Is this bulbar onset?

    You do know one thing that you have, celiac disease. And it may be what is causing your speech issues. While you wait for the EMG, you should work with your doctor to get the celiac under control and see if that improves your speech.
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    Is this bulbar onset?

    If you Google "celiac slurring" you will see lots of information about celiac disease causing slurring. I'm not a doctor but I would contact the doctor who diagnosed you with celiac and he/she about the neurological symptoms you are having and see what you need to do. I'm guessing you need a...
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    Split hand

    When the neurologist ruled out carpal tunnel, what tests did you have? Did you have clinical weakness or is it perceived weakness? Are there things you can no longer do with your hands? And what did the neurologist recommend as the next step in the diagnosis process? You mention seeing your PCP...
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    ALS Clinic - disappointed

    We have seen Dr. Weiss at UW and he was excellent. My husband gets most of his care from the VA, so we don't go to the UW clinic, but I would think that would be the place to go for a complicated situation like you have. I would call them directly (there is a phone number online) and see if...
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    CALS Roll Call Continued

    Mary, I'm glad you have an assistant coming to help out. And I'm happy that your PALS is thinking about going to the wedding. Fingers crossed that Omicron will have burned out by May! It is so hard to plan for things with both covid and ALS to worry about! Things are going OK for us. We are...
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