Gail Theile
Forum Replies Created
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Hi Tracy and other participants,
I’m glad your trip went well with your friend. He seems to be in the same frame of mind as my brother, who has had ALS for 2 1/2 years. He has been on radiclava infusions since he was diagnosed. For 2 years, he did very well and was able to talk, walk, eat, drive and was able to deal with the disease at this level. Then 2-3 months ago, he took his first downturn and he has had several others since then. This is where he is different from your friend. He is in deep depression and all he thinks about is his death and what it will be like. He is inconsolable and does not want to see anyone, including me and other friends and relatives. His wife is his caretaker. He is very proud and doesn’t want anyone to see him in his condition. He refuses to join these forums and talk to people in the same situation. He refuses anti-depressants. I think he will refuse the feeding tube when the time comes. We are all at our wits end…I have asked for suggestions and support but the problem is that he won’t accept or try anything and he just won’t help himself. It’s so nice that you were able to raise your friend’s spirits…I am only able to do one thing for him and that is to pray.
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I’ve read that Tudca seems to be listed in supplements many people take. After reading the description, it seems to treat Liver, Gallbladder, gut and kidney problems. Can anyone explain how that would help ALS?
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Hi Michael,
I read your post and I was very impressed by your wit and positivity. It’s good to hear that you’re mobile…I hope you have family around to help you. May I ask, do you need help walking…..like with a cane or crutches? I assume you don’t drive anymore….or maybe you do! Have you joined any ZOOM groups with fellow ALS people?
I’m sorry for all the questions. I ALWAYS ask tons of questions, My brother, David, has ALS. It took him at least a year, maybe more to be diagnosed. It’s a blur because there were so many appointments and so many tests. He’s had ALS for a little over 2 years. He just turned 70. He has been on Radiclava infusions from the start. He has had good luck with the infusions. He has 10 days on and 10 days off. Radiclava has recently come out with either pills or powder….I can’t remember which, but he was enthused about it and looked forward to trying it. Unfortunately, it has an extremely bitter taste….someone even described it as a combination of urine and vinegar! He just couldn’t deal with it and had to continue with infusions.
Again, I was so impressed by your attitude. My brother has gone through several phases…..starting with shock and disbelief….then to numbness…..then to grief and sadness….then to dull acceptance….and I’m sure there will be other phases. The infusions made him plateau and he was okay for awhile….now he feels like he’s taking a turn down.
I have tried to get him to join ALS groups…..to talk to people in the same situation…..but he has chosen to be alone with my sister in law, who is his caretaker. He needs to talk to someone but he is very stubborn. He won’t even take anti-depressants. I’m going to copy your post and send it to him…so that he can see how positive you are, in spite of your condition. Thank you for your thoughts…I will add you to my daily prayer list.
Gail
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Hi Lorraine,
Not sure how Palliative Care works. Does someone come to the house a certain number of times during the week….or does the patient come to the doctor’s office? Is it always the same person? Do you have to find a doctor who specializes in P. Care? Do they just come and the patient describes what he is in need of that day? My brother goes to an ALS clinic for a standard checkup every 3 months, but then he’s never seen by anyone and is only in contact with the clinic if he has a problem or a question.
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Hi Christina…..I had no idea there was such a thing as “Slow ALS” either. I don’t see any answers to your question but I would like to know about it as well. My brother has had ALS for a little over 2 years….he was on a very long plateau for most of that time. He could walk, talk, eat, breathe and do fairly normal things. His only treatment has been Radicava infusions…but just in the last month, he has experienced a downturn and it has happened quickly…..because of this, he probably doesn’t have slow ALS. But I’m still trying to check out everything I can. Are you on a specific treatment? I would think that your doctor would be the one to explain “slow ALS” to you.
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Thanks for your info, Amanda. I was trying to find out about this as well. The description of it was hard to understand. I also looked it up on Amazon and several types came up. I would definitely like to find out more about it.
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Hi Doctor…I have not heard of this medication, but after looking it up, I found that quite a few people take it. I also found several types made by several different companies. Is there a specific brand that you use? My brother has ALS and he is growing weaker and losing strength. I would like to know what you use so we can present it to his doctor. If it works, at least it would give him more comfort and more strength during this ordeal. Thank you for your post.
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My brother has had ALS for 3 years and I SO looked forward to the approval of Relyvrio which seemed to take forever. Also, the pill form of Radicava was great…….I read about many people using these and I wonder how they afford it….both are cost prohibitive for my brother…I’ve read that the annual cost for Relyvrio is anywhere from $150k to $171k (approximately) Maybe I don’t quite understand it but I would like to know what insurance companies actually pay the brunt of this, if any. These prices are listed as “cost-effective” and I’m not sure what that means either. I would appreciate some help on this.