Well meaning suggestions

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kljack16

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Hi - general question. Once my husband was diagnosed with ALS, numerous friends and family members send all sorts of “miracle cure” posts, ideas, suggestions.

How do you deal with this? It makes me really angry in one sense. I don’t have spare time to do the research they didn’t bother doing, but some part of me holds out the slightest bit of hope; so I look only to be disappointed again. In another sense, I try to appreciate their efforts. I know their intentions are good.

How do you tell them to do the research first or don’t be so gullible? How do you tell them you can’t be responsible for THEIR hopes and wishes they could do SOMETHING? That you don’t need anymore drama or responsibilities?

Sorry - I just get very frustrated and needed to vent, but I would also appreciate any guidance on how to handle these situations.

Take special care.

Kelli
 

wishmobbing

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I totally get how you feel about this. My suggestion would be to reframe it. See it solely an a sign that they want to help but feel helpless, so they turn to miracles. You can say thank you and propose something that would really help you out, like mowing the lawn or stuff.
Don't make their unreflected suggestions your task, if there is a cure you'll probably hear it here first.
 

ShiftKicker

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I am so sorry you're experiencing this. I'm pretty sure most people here are very familiar with this frustration. With regards to how to respond- it depends on who is making the well meaning suggestions. For most people, it's because they care deeply about the person affected and they want to do something, anything, to make it better. It's really hard for many people to confront the finality of a disease that simply does not get better. It's not easy to wrap one's head around.

My responses to people varied, but I was usually quite blunt. With people close to me who asked if I had considered/tried/heard about (insert random treatment here) I took the time to explain how MND works and that science had so far been unsuccessful in providing anything miraculous. And that anything "woo" based was simply too exhausting, expensive and disappointing to put energy into and that I wanted to save my energy for focusing on comfort and basic every day living. With people I didn't know so well my responses varied from "I have been confronted with a pretty serious disease burden, I have considered everything, believe me." to a very blunt "My health and what I choose to focus on is very personal and I'm not prepared to discuss it with you." Some people won't get the hint unless you're very up front- and we're not used to being that way with acquaintances and strangers for the most part.

*And, yes, I've tried changing my diet, physiotherapy, reiki, massage, acupuncture, pushing through, all the supplements, and so many other things my medical care team has recommended I try! No I will not try spiritual or energy healing, hyperbaric oxygen therapy, prayer, positive thinking, manifesting healing, etc, etc.
 
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affected

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That sure happened to us too. Early after diagnosis we even spent some time and money investigating one dietary idea and realised suddenly that this was a rabbit hole.
After that I would thank people and promise to look into things they suggested. Mostly, they didn't even ask about those things again! If they did, I would then respond that I had looked into it and it had not turned out to be as good as it first sounds.

One kind friend brought my bulbar onset husband Vit B pills, because they are 'good for the nervous system'. That was my favourite, it took everything not to laugh! I took them, as my nervous system sure needed the boost!
 

swalker

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Like many others, I received lots of advice in the early days from family, friends, and acquaintances. Some was offered by people who genuinely cared for me and thought their suggestion would help. The worst were the ones offering suggestions out of a self-serving financial interest (think multi level marketing).

I quickly realized that I trusted my doctors more than any relative, friend or acquaintance. This realization allowed me to easily ignore the advice of others without having any kind of guilt or remorse.

I concluded that it was not my problem they were wrong. No matter how fervently they believed in a "cure", they were wrong and my doctors were right.

Because I had concluded they were wrong, it was easy for me to simply ignore their advice. I spent no time trying to smooth things over or avoid hurting the feelings of others.

If the relationship did not survive this, I just did not care.

This approach worked out very well. It took the load off of me and put it on them. I did no research. I spent no money. I wasted no time.

In the end, I only lost the relationship with one acquaintance. That loss really had no impact on my life.

That is how I handled it.

Steve
 

affected

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We only investigate the one thing because it was so early after diagnosis and we wanted to believe we could beat the odds.

Ignoring bad advice is the best advice anyone can give 🤔
 

kljack16

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Thank you for the responses and great advice!! I’m sorry it seems to be a common occurrence, but I appreciate the guidance on how to maybe lessen it for us, or at least lessen the frustration with it when it happens. 🙂💞
 

KimT

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I'm not a very dismissive person. I like to hear other people out. I also know how to delegate LOL. When people came to me with things they "knew" would help I asked them where they got the information, were they trialed, were other PALS having success at using it and, if it wasn't too far fetched, to gather more information. I think, for the most part, people have good intentions. Early on I did a ton of research on my own and learned a lot.

What I really dislike is when doctors give me what I now consider bad information. For example, Mayo told me to gain 30 pounds by eating cake and ice cream and stop taking B12 injections "because you're not Japanese and your levels are very high." Another doctor told me supplements are worthless and I asked him how many courses he had in nutrition.

I finally decided to finish up my doctorate in naturopathic medicine since there didn't seem to be any outstanding treatments for ALS. At least it kept me occupied and helped me learn more about areas that interested me. I also think it's extremely important to keep good general health as much as possible.

I'm not bothered by people who think they have all the answers. Perhaps one of them has a helpful suggestion. Like Steve, I steer clear of multi-level marketing people but I have my own things that I believe help and probably some of you would think them foolish but they work for me.

I really didn't have to worry about relatives giving me wild suggestions. Many of my relatives are in the medical profession and most of the others didn't care much. Once I stopped earning good money, they stopped flying down for free Florida vacations 😂
 
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