Offers of help

[irismarie]

Don't know about the rest of you but I am spoilt with offers of cures;-)
Am currently offerred by friends and friends of friends:
cure by coloured lights,
cure by bright light,
cure by hands on and faith,
cure by freeing emotional blockages,
cure by homeopathy
cure by spiritual interference

All offerred freely from love

Now don't get me wrong. I reall really love these people and fully appreciate their wish to help me.
But why is it that in the past when I saw gravely ill people turn down ANY offer of help I could not understand, thinking that in their position I would try ANYTHING. Now that I AM in their position all these things seem so -excuse me for saying it - trivial in face of this massive enemy called ALS.

The other problem is, do I lie and say I feel better, things have improved - or do i tell them (gently, of course) their faith is a waste of time? Oh dear , I realise that phrase shows I have already made up my mind

Maybe it is just rural France that has this plethora of alternatives - or have you the same experience and how have you dealt with it?
Irismarie

 

[Danijela]

I try to educate people around me about ALS, so that they understand the nature of the disease, progression and what kind of impact it is having on my partner's body. I am blunt about it, I don't try to make it sound better than it is. Some have been better than others in accepting that at this time there is no known cure for ALS. On a few occassions, where people were persistent ("oh, it may be worth a try" or "what have you got to lose") I explained that everyone deals differently with the diseaase, and that in our case we do not intend to waste time on unproven, unscientific treatments. Something like physio therapy or water therapy to maintain mobility and flexibility of the joints - yes, all else is NO for us. And of course thumbs up for peg, NIV, EL (emotional lability) medication, and anything that can help with stiffness/spasticity (things that aid symptom management) when the time comes.

D

 

[GlenBrittle]

Some people just dont get it.

Most say that I am in their prayers , or are wishing me the best.

The best response to these people is "THANK YOU" .
It makes them smile , and they stop bothering me.

Glen

 

[indigosd]

You just gotta love them! We have the same experience. :] Web is on the Prayer list at every local church and many across the US. We have been the reicpients of a laying on of the hands faith healing from a church that we do not belong to :] very interesting but didn't cure him. We just welcome all of it and smile. It doesn't hurt and it does make them feel better. What I do that empowers me is that I ask them to become advocates of PALS, increase public awareness and demand research for the cause and the cure. :] It is my trade off for their offers of help. :]

 

[Le Le]

Hi Everyone,
As a close friend of a PALS I can relate to this thread. I guess I can see it from another perspective. it has been my experience that people will often offer these desperate attempts to help because it is too hard for them to contemplate the reality of the disease. To many people, a diagnoses of ALS is interpreted as a death sentence and it is very difficult for them to engage in conversation with a person struggling with this unless they feel that they can be positive. I think it comes from an extreme discomfort around the subject. Of course, many really believe in the "cure" that they advocate for. I will admit that I have been guilty of this at times and have often had to resist the urge to offer ideas and "solutions" to my friend. It feels less than authentic to me and prevents a deeper level of intimacy in the friendship so I try to avoid it. When I read this forum I am always astounded by the compassion and understanding that all of you have for the people around you and the people who post here. In the face of your own illness and all of the hardships and indignities that come with it, you still have room for the relatively unimportant issues that those of us on the fringe of the illness experience.

 

[thelma313]

I think it says a lot about who you are Irismarie, Glen and Web that people out there want to come to your aid. You attract others to want to help because of how wonderful you all are and let's face it there aren't a lot of concrete treatments out there for ALS so people are forced to turn to some hokey cures like "coloured light therapy" but the love that is coming from them is what really counts. They mean well. They love you!

My aunt got some bracelets from a Padre Pio Basilica in Italy. They are blessed by a priest and my dad is wearing one. My father does not believe that this bracelet will cure him although my aunt (his big sister) insists it will help. I am wearing one too and believe me I am the last person who would be seen wearing a bracelet that includes an image of the Pope (the right accessories matter to me) but I have worn this unsightly bracelet every single day since my aunt gave it to me. I do it because my dad is her little brother and she is hurting too. I know it makes her feel like she's doing something to help. I don't know if I'd sit under coloured lights but whatever little gesture of help and love that comes my way is very welcomed!

 

[Katie C]

Glen, you once again took the words right out of my mouth. (hush) Seriously though.. I generally just say a genuine "Thank you for caring" with no specific reference to anything working or not working.