Things you'd like to say to people, professionals, and relatives about ALS

[BlueandGold]

The only thing I would add Kim is if a friend or family member is struggling with how to help, suggest that they research this disease and what it does to those that are affected by it. Note that the disease has been recognized in the states since Lou Gehrig in the 1930's. The 1930's. The only drug offered to ALS patients approved by the FDA to slow progression is Rilutek. That drug was approved in the 1990's. This drug offers ALS patients the potential to live approximately 3 months longer. 3 months. Yes, a lot of people participated in the ice bucket challenge, however the vast majority participating had no idea what thus disease is or how affects those afflicted by it. I encourage everyone I come in contact with who want to help in some way to educate themselves about ALS and to pass that education on to others.

There have been promising trials in the past couple of years but unfortunately none of them will likely help any of us that are currently diagnosed. I'm not trying to be negative I'm stating facts. There are many other diseases that get government funding as well as relaxed FDA protocols for new drugs. Because the statistics surrounding ALS (at least rpthose that are published) indicate that only 5,000 people are diagnosed each year and at any given time, there are approximately 30,000 people living with ALS. So I would say do the math since Lou Gehrig was diagnosed and realize how many souls we gave lost to this disease. Awareness. That's what we need.

Vince

 

[AP1981]

Slightly off topic but people on another forum i use, asked me to give some ideas of what to say. I have pasted it below. Excuse the ranty style, i had had a visitor say all the stupid things.
know people mean well but sometimes they say stupid crap. If you ever deal with a terminally ill person, here are some things that have been crap and useful to me:
Crap:
* Saying anything like "it's god's plan". The subtext of this phrase is " god wants you to die a slow, painful and debilitating death ".
* saying " I know how you feel. I had cancer". No doubt cancer was horrendous but the word HAD means it was not terminal. Having hope that you will get better is different.
* probing. By all means ask "how are you". But when I answer " fine", do not say "no really, how are you? You need to tell me what is going on." I have a counselor thanks and people I confide in. If I want to tell you stuff, I will.
* say "what did you do to get sick?" If I knew, I would be getting a Nobel prize for finding the cause. Also, it is crappy luck. I led the healthiest lifestyle you can image. I have never smoked, taken drugs, I don't drink, I have always eaten well and exercised. Please don't imply I have brought this on myself.
* any phrase starting with "you should". Instead try " have you considered".
* talk about the cure you read about on the internet.

Thankfully the above are the only crap things that have happened to me. I have had brilliant support from people.

Things that help:
*Saying anything like- I am sorry this has happened to you, I am thinking of you.
* telling me what is going on in your life. I am your friend. I care about you. Sure, catastrophising a broken nail is not cool but everything else is awesome for me to hear about.
* helping out. It could be as simple as making me a cuppa.
* having a laugh with me.

 

[codyclan]

We have had some things said to us that do either sting, offend or hit you like a brick wall. While I realize that most people are well- intentioned and really just don't know what to say, I can offer a few things that should not be said. Some of these are an extension of what others have so eloquently expressed.

Let me repeat emphatically to NOT give advice about the magic elixer or cure or diet that you have heard about or read on the internet. While people think that is being helpful, it really is not. Believe us, we have researched and have heard about it but there is a lot of snake oil on the internet and at some point, we make our own decisions based on information from our docs and other trusted individuals. Questioning our choices or asking 'why don't you just try?' carries with it an implication that we do not want to actually help ourselves. Nothing, of course, could be further from the truth. If there was solid evidence that eating hay and magnolia leaves would cure this disease, then let me assure you we would be out grazing in the fields right now.

Along with that is anything that begins with 'Have you tried.....' -- same implication as above. Also 'Wouldn't Physical Therapy help?'. People want to believe that you can have some level of control, which is, I guess, the motivation behind some of these statements, but there is no 'control' in this disease.

Along with the earlier comments of 'but you look good', also DON'T say to a CALS 'He looks terrible, so skinny, sounds awful, etc.....' It's not like we don't notice these changes, believe me, but such comments only serve to make both of us even more self-conscious of and focus on the obvious losses.

Let me again reemphasize to avoid any statements that imply that we, as both PALS and CALS, could possibly be doing more to benefit ourselves, such as: 'Is he eating and/or getting the proper nutrients' (no we are deliberately withholding food. I mean REALLY?); What does PALS actually DO all day? (Um..what do you 'actually' do all day?); You should try to exercise (that's a great one!) 'You need to have more faith'. 'It's all part of God's plan' (or any variation of this sentiment) and, my personal favorite, 'God never gives you more than you can handle' --HA! (all of these things have been said to us at one time or another!)


And NEVER, NEVER, NEVER say "ALS -- wow, that's my worst nightmare". Ours too!!!!!!

 

[Buckhorn]

This is such a great thread! Kim, I hope that your compilation is someday posted on ALS.org and given out in pamphlet form to clinics, neurologist's offices, etc. I agree whole-heartedly with BlueandGold. With increased awareness, education and maybe a touch of "sensitivity training", unwelcomed solicitations and cures will decrease a bit. Well meainng people, including those who have at least a little understanding of ALS, feel shocked and hopeless too and resort to tactless comments in an attempt to "just say something".

 

[Katy Sunshine]

I would like to say to everyone (people in every aspect of life): Have patience with me.

Have patience when I speak.
Yes, it takes me a long time to say what I want to say. Please don't finish my sentences for me. That frustrates me. It makes me feel as if you are rushing me and you just don't have the time nor inclination to let me finish on my own. Each sentence I speak has been carefully thought out. (Do I have all the words? Do I have all the words in the right order? Can I pronounce that letter? Does that make sense? Am I being too emotional?) Please do not rob me of all that work by not letting me finish. There will come a time when I can not speak at all. Please allow me for as long as I'm able. I'm impatient enough. If we both are impatient this isn't going to work.

Also... my slurred speech does not mean:
1) I'm mentally incompetent
2) I'm deaf
3) (Oh and my favorite!) That I've been drinking or am drunk

Have patience with my emotions.
Yes, more times than not, I'm a wreck. You cannot possibly know what I'm going through if you don't have "IT". When dealing with my "fragile" state at least try to put yourself in my shoes before you say something completely insensitive. Please know that while I'm doing my best, under the circumstances, my days, more likely than not, are going to suck. It's no reflection on you.

Do not try to avoid talking about this disease with me, especially if I bring it up. It doesn't matter that *you* want to remain positive. Avoiding the subject or how I'm feeling about it, might help you but does not help me. Sometimes I just need to vent.

And last, but most important, do not make me feel as if I'm wasting precious time. There's definitely not enough of it.
(As you might have guessed, all of the above has happened at some point.)

 

[fionae]

Dear Kim,
Thank you so much for doing this.
What a meaningful action on your part.
I have provided you with some of my reflections via other
means, as I have not been up to organizing and putting it all in
a well written format.
I hope a few things I wrote to you may be of help.
Thank you for your creativity of thought and purpose.
Thank you so much for putting such an important project into play.
Thank you for the true time and real energy you are expending to do this.
Thank you for 'making this all count'.
For all of us around the world, forum members or not, and for those who are to
come in the future who will be afflicted with ALS.
Thank you for making a true and lasting difference.
Sincerely,
Laura.

 

[BillH]

A few I've heard and could do without hearing again...

Aren't you scared?
What does that feel like?
What is your wife (husband, child, parent) going to do?
You're kinda lucky, I wish I could nap all day.

I don't remember who told me, but these questions to a PALS or CALS are rather like the most common question people would ask the astronauts... how do you go to the bathroom. Will always remember that, and I hope in remembering that it will help you smile and bear the silly questions without anger. God bless us, everyone.

 

[kitkat]

There are so many great responses and suggestions posted!

Sometimes, well-intentioned friends or relatives tell you about some cure they read about, or ask why haven't you had this or that test? And they look at you like you are CRAZY if you say no, there is no cure and no, he hasn't had and will not have that test.
Here are a couple to-the-point answers:

*Thank you for thinking of my PALS when you read about that "cure". Unfortunately, there is no cure. If there were, the entire ALS community would know about it.

*I appreciate your concern for my PALS, but all appropriate tests were done, and he does not have Lyme (or whatever disease they think he really has)

I love my PALS and am with him all the way.
Kathy

 

[Bob R]

A few random thoughts on what I want to tell the healthcare professional. I have bulbar onset ALS, starting 18 months ago. I can no longer speak or walk, eating is a chore, but I still have good muscle strength, especially in my upper body and arms. And my mind is as sharp as ever.

Dear doc.

You say 5,000 people as year are diagnosed with ALS and that 30,000 Americans have it at any given time. That makes it a rare disease. I was at an ALS symposium recently, and 8 of us were sitting at a table having lunch. Next to me was a man I've met before, 65 or so years old, in his power chair, having difficulty cutting his food and speaking very weakly. Across from him was a lady, maybe 40, whom I've never met, also in a power chair, and was also having difficulty with the utensils and speaking very weakly. I know the man had ALS. Turns out the lady had MD (muscular dystrophy). During their conversation, I learned their symptom were almost identical. My father had Parkinsons disease, and later died from Alzheimer's. Watching him try to walk and watching me try to walk, you would have thought we were twins. Dear doc. Please don't tell me ALS, MS, MD, Parkinson's, Alzheimer's and a host of other motor neuron disease are all different. They are all forms of neuron disease and they are not rare.

I try to keep up with active clinical trials and I constantly read where scientists are discovering new information every day about ALS. The time going from research to trials and then to approval, is excruciatingly long. I understand the need for safety, but after a phase one trial, why does it still take years to complete the trial ? It's as if there is no urgency to the whole thing. A friend PALS claims this is because so many people are making a living and more from all the trials and research, that they don't want it to stop. That's a very cynical view, but it's hard to dismiss outright. I am convinced that drug companies want to find treatments for all diseases, not cures. Cures are one shot and your done. Treatments continue forever, making more profit for the company.

Finally, does anyone really die from ALS ? It seems people pass from complication of ALS. Be it pneumonia, choking, respiratory failure, accidents, etc. It seems to me that we can control all of that with feeding tubes, trache tubes and invasive breathing help, proper CALS, that life could go one indefinitely. Which is why, I guess, Steven Hawkings is still here. It's not a pretty picture, but to some, it beats the alternative.

 

[affected]

bob hope you don't really send that to a doctor but are just having a cynical jest by stretching things :lol:

 

[Bob R]

bob hope you don't really send that to a doctor but are just having a cynical jest by stretching things :lol:

No. just venting. But what exactly is a stretch ? Give me some input as to what you disagree with and why.

 

[affected]

I'm glad it was just venting, thanks for clarifying. I do understand your frustration, truly I do as I've been through watching my husband die without hope of a cure or treatment.

The main thing, for me, is that what you said were emotional responses not facts.
I would say that your comments about researchers for example is extremely unfair and not factual. There are teams of researchers the world around who are extremely dedicated to finding a cure, if not an effective treatment. To even suggest they are deliberately prolonging the process just to have a job ...

That's all, I don't want to hijack this wonderful thread.

 

[Bob R]

I'm glad it was just venting, thanks for clarifying. I do understand your frustration, truly I do as I've been through watching my husband die without hope of a cure or treatment.

The main thing, for me, is that what you said were emotional responses not facts.
I would say that your comments about researchers for example is extremely unfair and not factual. There are teams of researchers the world around who are extremely dedicated to finding a cure, if not an effective treatment. To even suggest they are deliberately prolonging the process just to have a job ...

That's all, I don't want to hijack this wonderful thread.

As I said in my post, that theory was propounded by a friend I know in my local ALS meetings. I don't subscribe to that theory. I think there are far too many decent people who wouldn't put up with that situation. But to think that profit is not a factor in drug trials by private companies, not by universities or government groups, is , I believe, naive. Why does it take so long to go through these trials ?

 

[KimT]

A few random thoughts on what I want to tell the healthcare professional. I have bulbar onset ALS, starting 18 months ago. I can no longer speak or walk, eating is a chore, but I still have good muscle strength, especially in my upper body and arms. And my mind is as sharp as ever.

Dear doc.

You say 5,000 people as year are diagnosed with ALS and that 30,000 Americans have it at any given time. That makes it a rare disease. I was at an ALS symposium recently, and 8 of us were sitting at a table having lunch. Next to me was a man I've met before, 65 or so years old, in his power chair, having difficulty cutting his food and speaking very weakly. Across from him was a lady, maybe 40, whom I've never met, also in a power chair, and was also having difficulty with the utensils and speaking very weakly. I know the man had ALS. Turns out the lady had MD (muscular dystrophy). During their conversation, I learned their symptom were almost identical. My father had Parkinsons disease, and later died from Alzheimer's. Watching him try to walk and watching me try to walk, you would have thought we were twins. Dear doc. Please don't tell me ALS, MS, MD, Parkinson's, Alzheimer's and a host of other motor neuron disease are all different. They are all forms of neuron disease and they are not rare.

I try to keep up with active clinical trials and I constantly read where scientists are discovering new information every day about ALS. The time going from research to trials and then to approval, is excruciatingly long. I understand the need for safety, but after a phase one trial, why does it still take years to complete the trial ? It's as if there is no urgency to the whole thing. A friend PALS claims this is because so many people are making a living and more from all the trials and research, that they don't want it to stop. That's a very cynical view, but it's hard to dismiss outright. I am convinced that drug companies want to find treatments for all diseases, not cures. Cures are one shot and your done. Treatments continue forever, making more profit for the company.

Finally, does anyone really die from ALS ? It seems people pass from complication of ALS. Be it pneumonia, choking, respiratory failure, accidents, etc. It seems to me that we can control all of that with feeding tubes, trache tubes and invasive breathing help, proper CALS, that life could go one indefinitely. Which is why, I guess, Steven Hawkings is still here. It's not a pretty picture, but to some, it beats the alternative.

Rob, I really get where you're coming from and I see some golden nuggets that I'll pull out of your post. I don't think your clinical trial comment is entirely unfounded. At the very least, if a group is dying, shouldn't they have the right to participate in a more expedited trial after Phase 1? Along the same line, why can't I have access to medical marijuana (I don't even want the THC) in my backward State? I did read that Hawking survived this long because his diaphragm muscle didn't die. I'm not sure that this is true but I do believe the more money you have, the better care you get or, at least, are able to get if you desire it.

 

[KimT]

We also need to acknowledge the difference among various countries and even among different States in the US.

Please keep posting. I can separate facts from emotions but emotions are extremely important to acknowledge in this disease. Today I spent an hour crying via FaceTime with my therapist.