Friend looking for help from alternative medicine

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MariaScan

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Thank you for this helpful forum with lots of information and advice. I’ve been reading these discussions since autumn 2021 but this is my first message here. I’m sorry for my grammar mistakes. I am not native in English.

I am very worried about my friend. She noticed her first symptoms in February or March 2021 and got her ALS diagnosis in January 2022 after very thorough examinations. I was with her at the doctor’s appointment and had prepared to comfort her and stay with her for the rest of the day. To my surprise she told the doctor that she wouldn’t accept such a hopeless diagnosis (it was already a third opinion). To us friends she said that if anyone of us would suggest that the diagnosis might be right, it would mean the end of a friendship.

After that she has tried a lot of different diets, vitamines and alternative treatments. Some of them have helped her (f ex magnesium has reduced cramps which is wonderful) but others seem to be expensive, unhelpful and even possibly dangerous. She refuses to meet any of her neurologists and puts her hope and trust to this alternative doctor. In the beginning I thought that while this doctor might be wrong he would be sincere. Unfortunately I am beginning to doubt that. He gives her a new diagnosis every month and keeps promising that she will be able to participate a dance competition in a month. All this while her symptoms are worsening quickly.

I am particularly concerned about two things. First of course about my friend’s wellbeing. She would need a lot of help and it would be time to prepare for the future but she will not hear a word about it. I feel sad for her and for our friendship. We’ve been the best of friends for over 20 years. We’ve helped each other over hard times and we’ve always talked honestly about everything. Now ALS has changed it all and I don’t know what to do. Whatever I say I feel dishonest. So I don’t say much. I think that this is her life and her illness and she has the right to choose how she wants to handle it and we friends should respect that. Still, there would be so much help that would make her life easier if she would accept her diagnosis and meet her neurologist. She must be very very afraid, and that makes it impossible for her to even think about the possibility of ALS.

Anyone else been in a similar situation?

Maria
 

KimT

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Maria,

Does your friend have a family? Thank you for sticking by her. ALS is a horrible diagnosis and most of us have gone through stages of anger, denial, and the other stages of grief. Six months is a long time to stay in denial, especially if she's progressing.

All you can do is be there for her.

I didn't believe I had ALS for a good long time but I did listen to my doctors. I ended up with four opinions from ALS centers.

For sure there are opportunist doctors out there. It sounds like she is being taken advantage of by one such doctor.

I'm so sorry your friend has ALS but so glad she has you.
 

swalker

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People vary in how they handle receiving a confirmed diagnosis. Denial is a very natural response. What is unnatural is to remain in denial in the presence of compelling evidence over a long period of time.

I don't think you would have much luck attempting to use rational discussion to change her mind.

It is her life and, in my opinion, her decisions about what to do with that life should prevail.

Reality will eventually reveal the truth. She may never accept the diagnosis, but ALS does not care. It is relentlessly progressive.

I encourage you to continue to provide what support you can. She will need someone like you when the truth of ALS becomes apparent to her.

Steve
 

affected

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Thank you for caring so much about her, how distressing this must be.
Usually when we see this much denial it can mean, not always, but can mean there is frontal temporal brain deterioration as well as the physical. If this is the case you cannot have any rational discussions at all, as a hallmark of this is not being able to follow complex lines of thought.

I wish I had answers, but if she is not deemed unable to make her own decisions, you are really in a tough place.
My husband had this FTD, and I know how hard it can be. I advocated for the decisions he chose, as I believed it was important that he retained what little control he had by decision making. Even if I did not agree with his choices, I advocated for him with all health professionals, care staff and family.

There are no alternative therapies that will reverse ALS. I hope you can find a way to work through this so that you can support her, without it eroding you too much. You can support here to talk it out at least.
 

Aaronmandevill

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My mom has been this way her entire life. When she needed gallbladder surgery for an obstruction she tried to heal herself by drinking a pint of olive oil. She passed out in the middle of the night and was bleeding all over the bathroom from hitting her head. We had to call an ambulance and she had emergency gallbladder surgery. After that she attempts self cures less, but still sees a homeopathic doctor. At least now she will take antibiotics.

Some of the most successful people choose alternative medicine e.g. Steve Jobs chose an all fruit diet and other remedies for pancreatic cancer. Once he finally sought treatment the doctors couldn’t do anything for it.

I think the reality of the disease will become present and she will come to terms with things in her own way. One great and sometimes terrible thing is we get to choose what happens to our bodies, I am sorry you are feeling helpless with this sustain as I know how I have felt with my mom.
 

affected

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Aaron makes a great point that is a hallmark of FTD. If your friend has always been the way she is with approaching this disease, it is just the way she is. If there has been a true change in her personality, it could well be the effects on the frontal temporal part of the brain. Unfortunately this and other brain deterioration happens fairly frequently with ALS.
 

MariaScan

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My warmest thanks to your kind answers Kim, Steve, Affected and Aaron. I really appreciate that you give your time and effort to help us who are just in the beginning of all of this.

I find it comforting when you say that I should just be there for her and not try to convince her to anything. I will try to follow that advice.

The possibility of FTD is also a valuable point, although at least for now I don’t see any hints of that. My friend is a bright and shiny thinker and her personality hasn’t changed. She hasn’t been interested in alternative medicine before but she has always been very determined and has chosen her own way to do things. That’s exactly what she is doing right now. I will follow her through this.

I can hardly imagine how hard it must have been to you, Affected, when taking care of your husband.

Thanks again for this discussion. It made me feel less alone.

Maria
 

Bestfriends14

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I'm so sorry you are going through this horrible disease with your best friend. I commend you for being such a good friend and seeking advice as to the best way to help her. My only recommendation is to do as the others have said- be there for her and support her in the way she would like to live with this disease.

It's so hard to be the one to watch your dear friend, husband, or family member go through ALS. We all want to offer advice, however, past some words of support, it is not our disease to manage; it's an awful predicament. Thank you for being a wonderful friend to her


Hugs to you.
 
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lgelb

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As others have said, if you can do it, she is best served by your putting your friendship above all. But meanwhile, you could explore how she could access the resources she is likely to need, such as a wheelchair, hospital bed, and BiPAP, when the time comes, and you could suggest little aids that could make her life easier, without referring to ALS or any specific diagnosis -- just "would this help you to..." and the like.

Best,
Laurie
 

affected

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Thanks for coming back and replying too. If you aren't seeing those personality changes etc, then this may simply be her way of dealing with things. This is going to be really hard, but I can tell you that if you put your wishes aside and support her, you will find both her journey, and how things are for you after her passing will be so much better.
ALS is terminal. Always. But she can choose how she navigates it.
You can be ready to offer her information if she asks for any, but a friend is what she needs most.
We have some great resources here that can help you have information and links etc ready to hand.
 
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