Who Checks/who Cares?

[candd]

To anyone:

Still new to this forum thing.... something really bothers me. I havent been on..havent written 4 close 2 a month basically cuz I'm getting worse (actually fell 2x in 1 day) and didnt feel like reading about other people or about what lies ahead of me. It sure would have picked me up if I received a note from someone asking why or where I've been. Boo Hoo, so I felt sorry for myself....I'm over it. I was until checking the "members list" and looking at the dates of some our members last "visit" to the forum (check it out).

Does anyone...old members...moderators...follow up on these people? drop them a line? reach out to them? Or is it 'out of print, out of mind' ????????:confused:

Wondering how strong the "family forum" is?

[Mike27]

Hello Denise,

I'm sorry that you're getting worse (which all of us PALS are btw) and I hope you feel better getting that off your chest.
It's apparent from your thread that you're pretty ticked off and you needed to get mad at someone...I've been there/done that! (With anyone within reach!) Don't let anger consume you though, that emotion will pass, just let it.

I think Al and the mods are doing an excellent job keeping with the questions posted on the forum. I have seen a few posts wondering where someone is and if anyone has heard from them.
I think it would be pretty difficult to keep tabs on absolutely everyone who visits this forum. You mention the members list...there are 16 pages of members. I think it would be a tall task to start keeping an eye on all of 'em.

I hope you're able to stick around and participate in some discussions.
It's a good group here! You just have to read, ask questions, make comments, vent or whatever.

Look forward to your posts!

Cheers

[CindyM]

Hi Denise and Mike. You've both your fingers on each side of the problem. Yes, people do get angry with what is happening to them or their loved ones and some respond by taking time off, others by venting. Both perfectly normal ways of coping.

It is true we've talked it over on how to keep up with our growing membership. But even if we had the staff (we are all volunteers) to do this, members might find it intrusive if somebody appeared to monitor their posts and check in with them it they were absent for awhile.

Some people PM each other more often and so there might be an undercurrent of keeping in touch that we don't see on the threads. But you are right, a member's absence causes worry with no appropriate solution in sight just yet. Cindy

PS; Welcome back Denise and glad you are over your rough patch.:)

[liz]

Denise -

If you give it time, you'll find some folks here you connect with and others you don't - just like any other crowd. Don't know where else you'll get this many folks to choose from.

Liz

[Al]

Hi guys. I have sent PM's to some of the people here that have gone missing. I do now have access to the Administrator function which has your email address listed from your registration and David and I are the only ones with access to that. I have used them twice to send messages and received no replies. Possibly they have changed email addresses or are unable to use the computer anymore. I don't know. I feel badly that we have no way to contact people but outside of people giving us their phone numbers there really isn't much we can do.
AL.

[trustinggod]

Hi Friends,

I wanted to add my experience to the discussion . . .

When I posted the news of my friend Linda's death back in November of 2006 I "met"
Harper after replying to one of his posts asking about books to read about ALS. I offered to send him the books I had knowing it may be difficult for him to get out to buy them. We exchanged e-mail addresses via PM and shared our stories. Harper was a member of this forum for about seven months and posted only 15 times. He and I exchanged e-mails often and I sent him some items that Linda had used to ease some of the difficulties and pain caused by ALS. I learned that Harper was alone in the world
with no wife or close friend to care for him and that he was a very private person. He checked in with this forum almost daily but rarely posted. He did however write long e-mails to me asking questions about how the end was with my friend and asking my opinion about his selection of verses to be read at his memorial service. We became fast friends and I was able to share about the hope of Heaven we have if we accept Jesus as our Lord and Savior. After a few weeks of discussions {via e-mail} and sending him still more books to read, Harper began to find some peace in the middle of the pain and loneliness of enduring ALS basically alone. Slowly he began the long journey towards acceptance of his circumstances and learned to trust that God would provide what he needed at just the right time.

Harper died May 28.

I check in here most days and read the new posts although I don't usually respond. Since Linda died I don't have any more questions to ask. Now that I'm not a CALS
I'm not too sure that I have anything to add to this group besides my prayers.

You are all kind and brave people with incredible hearts. Thank you for always being willing to answer my questions and offer encouragement.

God bless you all.
Jeanne

[CindyM]

Thank you Jeanne for sharign your experiences and for pointing out that support comes in many forms and from many sources. Even though you are "no longer CALS" you have something of value to share. Thanks for sticking around. Cindy

[saska]

Hello Denise,

I just want to say, for what it's worth, that my heart goes out to you. I can only imagine the fear and isolation you might be feeling as your condition worsens with what, in my opinion, is the worst imagineable disease. Perhaps you have seen friends distance themselves from you because they do not know how to handle your ALS diagnosis and now you have felt abandoned by this forum as well. But please know there are many people here for you, who want to help you. To add to Mike's comment, "It's apparent from your thread that you're pretty ticked off and you needed to get mad at someone...." From what I have seen, this is a good place to vent emotions. I know that for me, writing is one of the best tools for releasing emotional and spiritual pain. I hope you continue to post.

Best wishes,
Sharon

P.S. Jeanne, I am in the same boat as you since Mike died; but I am still compelled to remain on the Forum for now. Captain Al said that he feels this is one way that Mike lives on...the same would, of course, go for Linda. So, I stay for now and continue to pray daily for everyone on this Forum. I think what you did for Harper was wonderful.

[paula B]

Denise,
i understand how hard this is for you,,it is hard for everyone. Perhaps i am too blunt,,,but its not all about you. You say you dont have time to read about others or hear there problems. Well guess what? With anything in life what you put into this group is what you will get out of it.
If i am not mistaken i did write and welcome you to the group in a PM.
Wishing you well

PaulaB

[Barbie4]

Hello Denise:

You bring up a good point I think, but not one that would be easily fixed. I don't come on enough to even be able to keep up with everyone on here. I have been getting support from this forum for over a year now, and still only know a few.
I have been wondering about "Granny" from the east coast of Canada. Does anyone keep in touch with her. She has been a great source of strength for me in the past, but don't see any posts from her anymore.
Keep coming on Denise, everyone cares about you, no doubt. I know that my friend has never come on this forum, because she couldn't handle hearing about the future either.

Jeanne and Sharon, I am going to guess that once ALS is in your life, that it would be hard to just go on without it after your pals passes. A day doesn't go by that I don't think of ALS and I am feeling that it will be the same in years to come. Thanks for coming on here and helping others. Jeanne, as you know, you have been a huge source of strength for me. I was touched by your story of Harper. How many others on here are all alone. I just couldn't imagine, suffering this disease on your own. Gail has so many friends and family surrounding her each day.

Thinking of you all.

Barb

[georgia]

Jeanne, Sharon Please stay with us you have been there and seen the end and can show us We can make it as CALS. For me right now the forum is that kind of place. We are early stages so a lot of info does not apply now but I am sure it will. I read to see how people deal or dealt with feeling as well as problems. When I meet people most do not know what the DX will mean so it hard to talk to them.

[jimercat]

Hi Denise,

Sorry you are feeling so down, you have every reason to feel that way. And I see that you are in Physical Ed, so it must be really taking a toll on you. Are you able to work at all?

I have also wondered about others on the forum, but other than assigning volunteers to put say members a-j on their buddy group and son, I don't have a solution.

Liz is right, some people connect and some don't. The more you post (and feel free to vent anytime!) the more everyone can get to know you and your situation.

As Saska pointed out, you may have been hurt by friends that don't come around because they don't understand or don't feel comfortable. My husband has gone through that also, even with his own family. I hope that you have some one to lean on.

I understand you not wanting to read other posts...my husband has yet to get on any forum about ALS. And now he doesn't want to attend anymore support meetings. :cry:

Bottom line, we are here for you if you like. You are in my thoughts.

CJ

[MtPockets]

I hope by now you are feeling a little better Denise?
I've been there done that myself. Had days where I've fallen 3 or 4 times, finally stopped that by staying in my wheelchair like the doc and my wife told me to do. I'm so stubborn, I usually don 't give up on some things very easy.

There have been times when I have been away from the forum for a time, because I was not in the best of moods, and did not want to bring anyone else down. Then there are other times when I feel I just have to vent, to get things off my mind for awhile. Feel free to jump in whatever your mood, we understand.

God Bless
Capt AL

[Al]

Hey what do you mean you're not in the best of moods? I thought you were like the good news bear. Always full of cheer.
AL.

[trustinggod]

You guys are so kind and your words of support are appreciated.

Each one of you, as well as the other pals and cals on this site that I've been praying for have a very special place in my heart. I would not believe it possible had I not experienced it for myself, the magnitude of connection and sincere concern that developes between 'strangers' sharing words electronically. As I read some of the posts each day my heart aches knowing too well what lies ahead . . . and I vacillate between wanting to reach out and do something to try to help ease the way . . . or escape reality and simply delete the ALS Forum web site from my 'favorites' and get on with my life. Impossible. ALS has become, and I fear will always be, a part of my life.
Besides praying and supporting research with donations when possible, this forum is the only surviving link I have with the ALS community. Who knows what's just around the bend up the road on this journey we call 'life'?

Harper asked often that I tell him 'more' about my friendship with Linda and how we managed to stay friends through 41/2 years of her struggle with ALS. After I sent him her memory foam pad to use when he began to get sore from lying in bed, he said he felt her spirit giving him strength and courage to endure. He asked often how we were able to keep our faith and continue to believe that God is good -- all the time, in light of the fact that He had not answered our many, many prayers for healing. After writing long e-mails trying to answer his questions . . . I finally told him, when he got to Heaven he could ask her himself. He wrote back saying he'd do just that and he said they would both be waiting at Heaven's gate to welcome me one day. It is so unbelievable to me that I had the opportunity to help a man I never met in person and never spoke to on the phone, in his hour of need, simply because I offered to send him some books on ALS.

So my friends, with a heavy heart overflowing with both joy in the friendships and sorrow in the losses, I thank you for listening to me.

And yes, I will always be available to help any cals (pals too if I can) in any way I can. If any of you ever want to e-mail me, send a private message and I'll give you my e-mail.

Take care everyone,
Jeanne

[candd]

Denise,
i understand how hard this is for you,,it is hard for everyone. Perhaps i am too blunt,,,but its not all about you. You say you dont have time to read about others or hear there problems. Well guess what? With anything in life what you put into this group is what you will get out of it.
If i am not mistaken i did write and welcome you to the group in a PM.
Wishing you well

PaulaB


To Paula: Thanks for the slap..i've heard all of those words before (not too long ago, i might add) and i needed the wake up!
To all others: Thanks for the 'ice' after the slap, i needed that as well.

I've re-read what i wrote (numerous times) and i realize that it was pure anger and frustration...at what is happening to me, that started it all. I thank you (pl) all for seeing that, while you read what i 'vented'.

I'm off to therapy so i don't have much more time to write. I plan on sending a few p.m.'s when i return.

Thank you again .... my forum friends.

[MtPockets]

Thank you for what you said before and now? For saying what all of us feel some times, but maybe are afraid to put into words, because of the fear of rejection. When so many of our friends and family have rejected us, when we needed them the most. Thank you for feeling that you can trust us to understand when you need to vent and we will not turn away.

We really do feel your pain, emotions, confusion, doubts, and fears. Some of us just express it in different ways and I think that is what makes the Forum so great.

May you somehow find the peace you seek to deal with this disease. I pray that God will give you the "Peace that passes all understanding", that only He can give.

Hey AL, I'm big as a bear, but not always a teddy bear all the time, just ask my wife. Poor thing. I wish I were.

As you know from reading "some" of my postings, like the one where I comment about what I say when someone asks , "How are you doing?" And I say, "How do you think I'm doing, I'm dying". Strange, I just did a search to try to show someone how I am when I "lost it", and I could not find the posting. May be best.

But I'm still trying, still growing, in the grace and mercy of God. I just hope one day when I stand before Him He will say "Well Done". That's my HOPE, my Dream, my hearts desire. Just to please the Father and share his love along the way.

I pray God will help us all as we walk through this battle together.

God Bless
Capt AL

P. S. You have my permission to print out the picture of me below to put in your closets to keep the bugs out. :grin:

[saska]

Denise, I was so glad to open this thread and see that you had posted! You've been on my mind, maybe partly because I'm from the Chicago area (McHenry, about 50 miles northwest - on the Wisconsin border), and am going there next week to visit family, friends and evidently, the cicadas....

Capt Al, There's no way your pic should be put in a closet -- you look great! I love your beard!!

Jeanne, I am humbled anew by your postings and for your selfless care to Harper. You truly are a Good Samaritan...may many, many blessings be returned to you! And yes, now that I have been affected by ALS, I can never turn my back on it. Two of the triathlons I am competing (boy do I ever use THAT term loosely) in this summer are benefits for ALS research. I wear a tri top that is orange, white and black with the words "WAR ON ALS" printed on the front, back and down the sides (designed in honor of the race directors' friend, an accomplished triathlete now stricken with ALS). People look at it and ask "What is ALS?" And I tell them.... The first race is this Sunday. Last year, the proceeds of these races also went to ALS; Mike got up early to send me 'good vibes.' This year I will do these races in memory of Mike and in honor of all the PALS on this Forum.

Sharon

[Carolcora]

I too am a new member. I am having a hard time with my als acceptance and symptoms of the disease. Also, the medical community is not very supportive. I have a massage, acupuncture and a mind body guy, all of which I see every week. they cannot cure me but they give me enough encouragement to make it another week.

[jimercat]

Hi Carol,

Sorry you have ALS. Hopefully you can find some support here on this forum.

Have you been in touch with the ALS Assoc near you? They can give you lots of help!

Please check in with the forum so we can get to know you!

CJ

[MtPockets]

Please know we have all gone through what you are facing now. You are not alone. Please take some time and read a few of the other threads to see how we have learned to handle and deal with this terrible disease. It might help to use the search feature above to find some subjects you may have questions about.

Feel free to jump right in at any time with any questions you may have.

God Bless
Capt AL

[vmd]

Carol:

Welcome to the forums. You will find many caring people on this site.

Capt. Al:

Thanks for the photo. You look quite happy and relaxed. Just out of curiosity: You don't seem to have any obvious atrophy on your limbs, as they appear quite normal in the photograph. Have you experienced atrophy?

[MtPockets]

I have lost about half the muscle mass in my legs and I can no longer walk. When this disease began I weighed around 270lbs. I am now around 255lbs. If I lock my legs in a straight position I can stand and move from one place to another, sort of like Frankenstein.

I have just begun to lose muscle mass and some use of my arms and hands. I am having spasms and charlie horses in my upper arms almost all the time now. I've also been experiencing something I call crab claw, because I do not know what is the right word to describe it in my hands. They draw up in a ball and I have to pull very hard to straighten the fingers back to a normal position?? Anyone know what to call this? Maybe frankensteinclaw? :D

God Bless
Capt AL

[CindyM]

Hi Captain. I think frankensteinclaw describes it perfectly! And everybody else is right-you are too good-looking to scare away bugs. BTW, I quoted some of your quick come-backs. Nothing wrong with a little sarcastic humor when you're having an off day! Nothing wrong with pretending it was sarcastic if you really meant it at the time, either. Hey, everyone's entitled to a bad mood here and there! ;-) Cindy

[Al]

Hey Al, did you ever look at the pics of the hand braces that I posted? They help with the crab claw thing. They were made by the OT.
AL.

[paula B]

Denise love that you still have your humor