Who Checks/who Cares?

[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 Denise

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]

So sorry

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.

 

[brooksea]

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]

Welcome to the forum Carol

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?

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