How people respond

[joni51]

When you tell someone you have ALS or that someone you love has it:
A- Do they say something like" well I hope they get better soon"
B- Are they helpful, and sincere
C- Or do they say something even dumber:?:
Just wondering because I find so many people are very uninformed about the progression of ALS?

 

[mare]

Have had all 3 said to us.

People are unfamiliar with ALS in general. Unless someone has had a family member, or a friend or neighbor with the disease, I think it would be hard to understand about progression. Understandable, I think.

 

[Judith]

When you tell someone you have ALS or that someone you love has it:
A- Do they say something like" well I hope they get better soon"
B- Are they helpful, and sincere
C- Or do they say something even dumber:?:
Just wondering because I find so many people are very uninformed about the progression of ALS?

Yes Joni, to statement A-"well I hope they get better soon"
My husband quickly says, she will not get better, unless the Lord heals her, as this disease is untreatable.

 

[Pepper]

I remember a neighbor telling us, a funny closed up look on his face that his son-in-law was recently diagnosed with lou gehrig's disease. Our response was, "oh..." and nothing. He must know we did not know the disease, from our lack of response. I knew only it was something bad and that was all. I remember that often and the look on his face. I get that also, the optimistic, "I am sure he will get well soon." It is easy to spot those familiar with the disease, there is always that instant, - Oh, I am so sorry. Then - how are you holding up? It touches me how much those familiar with the disease feel for the carers.

 

[Katie C]

oh yeah, we had all three. I think the most frustrating was from Glen's dentist's office. The staff had no clue, and apparently weren't really into educating themselves. And there was a constant theme of "oh.. I'm sorry he's not improving" from his boss.. again.. someone who should have known better, or known how to educate himself.

 

[Chris_b]

Most people i have told have no idea what it is, but to be honest i didnt till i found a web page on it whilst looking for an answer to my symtoms the day before my diagnosed off the neuro.

most common responce..................oh god that sounds nasty! what is it?

 

[Katie C]

I've often wondered if it's because I grew up with a dad who wrote sports and loved baseball that I knew what ALS/Lou Gehrig's was? It's always surprised me how many people have never heard of it at all.. especially folks in the medical profession!

 

[Lavender Lady]

After my recent overnight stay for my Peg tube the nurses and doctors had to do some research online to find out about ALS so they understood my disease better. I find that while people may have heard about ALS they do not know the disease process at all. If they are interested I educate them.

 

[joni51]

I think you are all right. You know there is so much research for cancer and other diseases, why is there not more on ALS.. Not saying that the others should not be important, but this is too! Just wishing I could do something...

 

[KC2U2]

They do say some silly things, and yes, most are totally unaware of the the disease or if they've heard of it, they don't understand how it effects people and that there is no cure. People who I know well, I will share more of the picture with and then often get the "Wow! I thought I had problems, I'm glad I'm not you"

 

[BeckyUK]

I've had responses from the, very nice, 'is there anything they can do?' to the expected 'what's that?'.

The worst one was telling a woman who worked for me what I had and her response being 'it couldn't happen to a nicer person'. She then explained that she meant that she felt that I had the personality to cope with whatever was thrown at me, but...whatever, think about what you are saying !:-x

In response to the 'what's that?' question I usually say that it's what Stephen Hawking has, but lately I've noticed that makes people go a bit pale.;-)

 

[abbas child]

Joni, does this make you feel isolated? I'd think that would be a normal reaction to the lack of response.

For folks who were genuinely interested, I sent them a website to read. I think this is it:
Lou Gehrig's Disease (ALS / Amotrophic Lateral Sclerosis) on MedicineNet This is rather short and to the point.

A lot of times, people need repeated explanations, but genuinely want to understand. I think one problem is that they assume it originates in our muscles, and don't know what the nerve does for the muscle that atrophies.

Marianne is right--unless people have a reason to be acquainted with the disease, they rarely have a clue. Then again, I have a friend with CNS Sarcoidosis. She is very, very isolated---who has heard of it or understands what it can do?

 

[Katie C]

I was actually diagnosed with sarcoidosis several years ago! My dermatologist diagnosed it by accident (found it through a biopsy of what she thought was a skin cancer!) She even had to look it up. I have to say it has not changed my life much at all. I do get some skin lesions that look like sort of weird moles (hence the trip to the dermatologist!) And I do notice that if I'm really stressed (me!? Stressed1?!?) I can tell it's flaring because of some swollen gland/fatigue. That's really about it. In severe cases it can cause liver and pulmonary issues, but cases that severe are rare. And.. warn your friend.. most of what she can find online is worst case, alarmist type info. My pulmonologist was very calm and down to earth and as I said.. it just really hasn't been an issue.

 

[abbas child]

Oh, Katie, that is really wild. My friend's has caused permanent eye damage and also cognitive loss. Her's was found in her eye, but she was told it's usually found in the lung through a biopsy. She's 10-12 years into this, and it is a rare form. You're the first person I've ever known of who's heard of it! Oh--she also gets swollen glands and fatigue... and pain all over.

 

[Tokahfang]

It is hard to know how to explain PLS to people. If you relate it to ALS, they freak out. If you explain the biology, they just look at you sort of blankly. If you get real simple, it sounds more terrible than the experience actually is. And no matter what you do, you still get that same response "Well, I hope you get/feel better soon!"

Doctors are the worst, actually. I have settled on an interview process where I force them to prove they know what it is OR admit honestly they have no blooming idea. If they pretend, I don't go back.

But overall, it is easier than those pre-diagnosis years. You can't live in a wheelchair without getting the question a few times a week, and the answer "I have no idea" stops the conversation in its tracks. They just can't imagine living for years with collapsing legs and no known cause or name or anything.