I have sitting in a leter holder one of my most treasured things. It is a letter from Jandel that she wrote about 2 or 3 months before she died. I sent a copy of it to Bob and he was so touched by her doing it. they were 2 great human beings.

Bob died within a year or so of Jan's passing from I think a massive heart attack or an aneurysm I am not sure which. His wife passed away a year later. Carol was so ill and he was so good to her. I remember him telling of the trip he took her on and she didn't know it but loved the feel of the sun on her face. That was enough for him.

It is such a loss of all the work JanDel did for PSP and I really loath the fact that, her words, they are not put back on for those who need them so desperately.

But who said the world is just....................not me

I knew that Bob had died unexpectedly Thelma...he did take such good care of Carol..I didn't know that she had died too. I spoke with him when we were in England and we had planned to go to Stonehedge together but he was not feeling up to it that day. His voice on the phone sounded exactly as I had expected it to. He was a lovely man. Both he and JanDel were wonderful people.

Thanks for telling us.

My goodness that disappeared before I could respond to it. I must agree with what John posted...

"Should this forum fail, then the blame must rest width the membership as its future is dependent on our actions. From what I have seen of *** it appears to be aimed at a different sector of the ‘market’ from ‘***. *** as I have said before ‘it appears cold and uninviting' and may well not appeal to everybody as a first choice ‘home forum’.

Lack of participation will make any forum fail. You can lurk and read all you want but if you don't contribute you'll have no one to blame when there is nothing here to read.

Thanks BobbyB for sharing.

*administrative edit*

Good grief Thelma....I wouldn't dream of thanking you. I quit hugging you cause that used to tick you off too.

*whisper....taking your suggestion here and posting from the heart.

Hi Alffe.
At this point I'm just confused.
I 'm not even sure what happened as I just logged in today.
I'm not sure if the quote you posted was from Doc John or another John.
However, I don't know of "any" ALS forum that seems cold and univiting.
A long time ago , a couple of moderators on one got overzealous on one but to me that is now history and water under the bridge.
Some forums are more scientific and medically focused in nature -- but different PALS and CALS focus on different things.
Some focus more on experimental meds -- some choose that route others don't.
Some like this one post information and news mainly.
All forums have their place and serve a valuable service.
But , a forum is both what it's administrators and "all " members make it. That I do definitely agree with.
The most vocal members however , are not always right and do not neccessarily represent the majorities opinion --and I'll include myself in the vocal group-

I don't post many news articles myself. Though I do read them , find them interesting and appreciate them.
Everybody has their own unique pesrsonality and capabilities of contribuiting to a forum.
I feel the best way I can help others for me personally as I have been a CALS for over 8 years -- is to help try to solve and share experiences of how daily problem were handled or take fear out of specific challenges in dealing with the disease, when a question is asked.
But no one solution works for all, and no one forum will address all PALS and CALS various needs.
If a question is posted I 'll try to help if I can., on any forum I am a member of. But , you can't share experiences or support others if questions are not asked.
Lisa

It's my fault you're confused Lisa.

No, my quote was not from our doc john.
My intention is/was to try to generate some activity on this forum because we can't expect BobbyB to do it all. At one point this afternoon there were 35 people lurking here and no one posted a word.

But you're absolutely right...it takes a question...conversation is a two way street.

How are you today? *grin

Whew !!

I feel much better now.
Though, I don't know why people want to lurk and not post.
Maybe some simply can't and that is understandable . But others can.
Lisa

count me in as lurking.

Ok there were 34 people and a monkey! I'm going to bed now. *grin