struggling with ALS involvment

[LovemyPALS]

I was very involved with ALS when my dad was diagnosed. 2011 his health was so bad, I could not be involved as much as I wanted. 2012..1 year later...i am in denial on being involved.

am i avoiding reliving the reality of what me and my family went through? I need and want to be involved and continue getting the message out and doing everything i can. why is it so hard?

how many of you have continued the Als walk and continue to be involved after a loved one has passed? i'm struggling.

advice? advice? I need to be motivated!

love to each and every one of you.

 

[HelenL]

Maybe you just need more time to mourn what your family went through... have you talked to a professional about all of this? Sounds like it may give more insight into your feelings. You'll find your way through all of this, and most of all I wish you peace.

 

[trfogey]

Why are you feeling guilty about not being more involved in the continuing fight? You've certainly earned a little break.

The fight will likely still be here for quite a while, so ease back into it by helping ALSA or MDA with some of their spring activities.

 

[EGBAR]

I think that once our lives are touched by adversity, regardless of what it is we are deflected onto another tangent and never the same. It is the growing process we have to struggle through. I agree with trfogey you certainly have earned a little break, and this will be here for a long while to come unfortunately. There will always be people that need help that you can be involved with, always need for volunteers and a helping hand. Thank you for being so motivated to want to reach out. I know whom ever you offer to help will be greatly appreciative too.

 

[Miss]

Since I live in an area that has such a large cluster of ALS patients, I know so many people that have lost someone to the disease. Each person finds there own way. Some have closed the door on ALS and moved on. Some are involved only at walk time, but come out with full force. A few of us have stayed very involved, attending support groups and visiting PALS. Everyone lives differently and grieves differently. You will figure out what course is best for you. My guess is that, since you are feeling guilty for not being involved, you will at least want to have some part in the fight. Good luck to you.

 

[SEproud]

I had a loved one with ALS. SHe was not related to me but I loved her, she took care of my in her home daycare from age 4 - 14. Her 5children were very very active in the fight against ALS. You name it and they did it. After she passed away they found it very painful to continue. It has been 3 years this month and even mentioning it brings them to tears. They can not even discuss it yet. So, I have very little knowledge except for knowing that wonderful family. I think they have similar feelings. You should not feel bad about your feelings at all. I am not qualified to give anyone advice, but I'm sorry you feel bad and I thought I would share this.

 

[cervus]

After my husband died in August last year, I talked to the manager at the ALS Society here and explained my thoughts too - hate ALS so much and disassociate myself with it or help out. She said my thoughts were common amongst people who have shared this adventure. Some people start volunteering right away, some after a year or two. I've started out in a very small way just by ordering a whole bunch of ALS bracelets and handed them out to friends who wanted them (both mine and the girls') to help raise awareness in a small way. Our friends and our family have donated a lot to the ALS Society to give back in some way what they gave us when we needed their help. I'm not sure I'll participate in the walk in June this year - my girls want to. I'll see how I feel then. I'm so sorry for the loss of your father. Yasmin

 

[KKay]

I think your feelings are perfectly normal. Give yourself a break, whether it is 1 month, 1 year, 10 years or for the rest of your life. ALS is a very painful disease to have and to help someone thru because we are all so helpless in fighting it. Walk away from this pain and the reality of a disease so dreadful. For now, if it helps, channel that giving spirit you have to something that fills and gladdens your heart. Maybe one day it will be the fight against ALS, but maybe not and thats ok. I have a feeling that whatever you focus this wonderful energy on you will make difference. Good luck and God Bless.

 

[Katie C]

This is your time to do for you. I stayed away from these forums for a while, then returned to be what help I could be, especially to those whose PALS were also dealing with FTD. My son raised a great deal of money doing an ALS bike ride early on. He has no inclination to do that again. He needs to get back to his own life.

You will find your own way.. and it will be the right one for you.

 

[Atsugi]

Do not feel guilty if you don't get involved. It's like going into combat. You did your tour.

If you can continue the fight, please do, but it is not expected that you would continue. JMHO.

I help out folks from time to time, with equipment, assistance, or just advice, however... I'd rather do it--not because of my emotional connection.
I'd rather do it when and if it becomes the thing that I'm best suited for.
(I don't think I'm expressing this well.)
I think I mean that it was once all consuming, and it's time now to continue your life.
If you've got the talents and skills, and enjoy solving the challenges of this fight, then it's right for you.

 

[Ms. Pie]

Well said Mike.

 

[cervus]

Just an update about volunteering. I was at a bereavement group session at the ALS Society last week and asked what kind of work they had for volunteers. Anyway, the girls and I have volunteered to help out at the registration desk at the Walk this June. I did say there's a chance I won't do it. They're also hosting a fund raising Casino in the first quarter of next year. I said we'd most likely be available but weren't ready to commit for several reasons. It's really hard though. I don't know if I'm brave enough yet.