"How's your mom?"

[vw-fl]

Over the past 20 years we have always been honest. For us, regardless of why someone asks, we view it as an opportunity to connect, inform and educate. How people decide to respond and interact with us is really up to them.

vw

 

[affected]

I do think there is a difference between someone who has PLS (is that what you are dealing with vw for 20 years?), and dealing with a more rapid progression and the imminent death of your PALS.

My Chris was gone 11 months after diagnosis. So for people to ask every month or so - "oh how is Chris doing?" That was really hard as they wanted me to say - "oh as well as can be expected", or "not too bad this week or something like that".

I was racing to try and keep up with progression and injuries, and with FTD his shocking behaviour. Standing in a supermarket or other public place, there was no way to make their flippant questions an opportunity to educate. I would be hard pressed just to be getting through the day.

Since he died, I've taken every opportunity I can to educate people, as I'm no longer in the thick midst of dealing with it happening in my face.

Lixen I found a third type of people - people who thrive on the macabre and actually do want to know certain grisly details but do not care and have no intention of becoming involved.

 

[Lixen]

I do think there is a difference between someone who has PLS (is that what you are dealing with vw for 20 years?), and dealing with a more rapid progression and the imminent death of your PALS.

My Chris was gone 11 months after diagnosis. So for people to ask every month or so - "oh how is Chris doing?" That was really hard as they wanted me to say - "oh as well as can be expected", or "not too bad this week or something like that".

I was racing to try and keep up with progression and injuries, and with FTD his shocking behaviour. Standing in a supermarket or other public place, there was no way to make their flippant questions an opportunity to educate. I would be hard pressed just to be getting through the day.

Since he died, I've taken every opportunity I can to educate people, as I'm no longer in the thick midst of dealing with it happening in my face.

Lixen I found a third type of people - people who thrive on the macabre and actually do want to know certain grisly details but do not care and have no intention of becoming involved.

Flippant is the perfect word. Anyone who is truly concerned isn't going to ask in passing at the local grocer. At least, not from my experience. I hate to sound bitter, maybe I still am?, but the questions 'on the street' just incensed me. Right or wrong, they just did.

Luckily, I didn't run into the third type of person. I think I probably scared them away with the permanent scowl I carried on my face.

 

[vw-fl]

Yes, I totally agree there is a difference between someone who has PLS and ALS as well there being a difference in the experiences of people with ALS whose progressions are fast, slow or otherwise.

Hubby was dx in 1997 by 2 neuros who are tops in ALS - Dr. Kelly (George Washington U) and Dr. Jeff Rothstein (Johns Hopkin U). In addition to participating in ALS clinical trials at Hopkins he has met with and contributed to ALS research with Dr. Sadique (Northwestern U), Dr. Bradley (U Miami) and others. So yes, we are positive the DX is ALS, albeit very slow progressing.

After we moved here in 1999 we discovered there was little to no support for PALS and CALS in our area so we helped form and joined the Board of an all volunteer non profit ALS organization. For the next 12 years (we resigned when my mother had a major stroke and also needed help with caregiving) hubby and I helped PALS and CALS in any way we could - we facilitated 2 monthly support groups (one for PALS and their loved ones and one for CALS only), loaned out DME & Communication devices from our loan closet, helped arrange and pay for respite for CALS, helped with making grants and numerous other requests.

Hubby's disabilities are very noticeable and we have occasionally experienced people "on the street" asking us questions such as what's wrong, what do you have, did you have a stroke, etc? More often than not it turns out to be someone who also has ALS, or who has a loved one or a friend who has ALS or has lost someone to ALS. We had an experience at a restaurant which we thought was intrusive and annoying at the time (but can now laugh at because the person honestly thought he was being helpful). I was holding hubby's cup to his mouth for him to drink when a another diner comes over to our table with a straw and asks if he needed one. We were caught off guard but nicely replied sorry but he is unable to suck liquids up through a straw but thanks anyway.

The only time we have run into the third type of person was on one of the older ALS forums which is no longer in existence.

vw

 

[affected]

vw thank you so much for all that detail on your history so far with ALS.

That is amazingly slow progression and your work for PALS and CALS has inspired me

I don't know how many times straws were suggested to us - like we hadn't thought of or tried them before. Yep with no lip seal and ability to suck a straw just don't cut it!

Lixen I even had someone stop me in the supermarket some months after Chris died. I always see her there as she works there, so that's not unusual. But she said to me, oh I'm sorry I heard you husband died, what was it - natural causes?

You can maybe all imagine my stunned pause as I tried to process how anyone could think a 55 year old man had died of 'natural causes'!!!

 

[vw-fl]

Your welcome Tilly.

Yes, it is an amazingly slow progression for my DH as well as 5 other PALS from our support group who were all DX over 15 years ago (2 PALS - 15 yrs, 1 - 17 yrs, 1 - 20 yrs, 1 - 25 yrs and 1 - 30 yrs). Most of them received their DX from one of the Neurologists I mentioned in my previous post.

And come to think of it, there was one of the third type of persons who was banned from this forum some years ago.

vw

 

[affected]

vw I hope you start posting a little more, you must have a wealth of experience in tips you could offer.

And, I reckon you could do with some understanding support here for yourself too!

mmmm third type, that could become a fun code here