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Active member
Sep 24, 2005
Loved one DX
Hi Everyone..
I'm sorry I haven't writtien for a while..
I am not sure how to write this.. so I am going to start where I should.. I had a golf tournament last June to raise Money for ALS..and did a pretty good job at it..and at my tournament.. after the tournament people started to show up and join their families.. Lot of these people had ALS.. I am not being ignorant when I say this.. Please DON"T get me wrong.. But I looked at them..and then at MOM.. and I would say to myself.. this is not MOM.. Well today..and for the last few months.. IT is MOM.. Mom has gone down LOTS since last June.. She walks everywhere now with her walker.. and now talking about a electric wheelchair (getting measured tomorrow) her speech has changed.. She has lost lots of weight.. her speech has changed.. ( I'm not writing this to get a response.. but writng to maybe help with my hurting.. I am sorry for that) Mom still tries to smile..and put on a face that she is ok.. and nothing is wrong with her.. But recenbtly she cries alot..and I know she is scared.. My Grand mother just passed in the last few months..and Mom never told her she had ALS.. she didn't want her mother to worry about this.. But now that my Grand Mother is gone.. i find my Mother has given up some.. good or bad.. i support her in all her decissions.. ALS is a HORRIBLE F&**ing disease.. I am sorry.. I wish I could do more..and help support ALS more and more.. People here at the ALS Forums.. are wonderful people.. they are so loving, and giving, and caring.. This message probably does not make alot of sense..and I am sorry.. I will write more in a bit..
I understand

You thought that maybe your post didn't make any sense, but really I understood every word you said and every word you didn't say.

As much as I tried to prepare and strengthen myself as to what was to come to my friend Gail, I couldn't have imagined this in such a short time. I would never have believed that ALS would have taken so much away from her so quickly. I cried and cried and obsessed myself with ALS for 10 months and now I am somehow in a little protective bubble of denial or whatever and I am going to stay here for a while. If you know what I mean.
I love going to see Gail each week and we still have our laughs. I treasure every moment I have with her and her family. I treasure every conversation we have as that will be taken away from us shortly.
Her one year anniversary of diagnoses will be next week and I hope it is not the pin to burst my little bubble. I have ridden this journey with her and am amazed at her strength and determination to keep going. That is the person I have known all these years, and that is the person I see when I visit and help.
I am going away with my husband and children to Florida next week and it is so hard. I really don't want to leave her. Two weeks without seeing her is going to be so difficult. On the other hand, I have to try and have fun with my kids. This will be the first trip we have ever taken.
So many mixed feelings, and so much pain.

I understand

Barb.. I understand the bubble of Denial.. I was there last June in my Golf Tournament for ALS.. Looking at others.. looking at Mom.. denying it was Mom.. In the Last year.. I see a difference everyday I see her.. And when someone asked her a question awhile back..and when she says.. "Yesterday was a better day" that.. that statement broke my bubble.. I Ijust wish I could do so much more for her.. I am the oldest and have 2 sibblings.. they broke my heart the other day when I emailed them..and told them they should ask Mom any questions they want answers for now.. or anything else they may want to say to Mom. their replies blew me away.. I have a hard time thinking that we are siblings.. their replies put me off work for a week with stress.. which put me in the hospital for a week.. as I said in my first post.. and each and everyone of us KNOW.. this is a F***ing HORRIBLE disease.. and I wish I could do lots more to raise money so other people and their famile don't have to go through what we are all going through.. Again I am sorry for babbling a way..
[email protected]
I am really new to this group but I admire you immensely for putting on a fundraising effort. I hope that I can somehow do something positive to fight this awful thing should it really turn out to be what kills my mother.
I have found incredible strength in my faith in God during this - seriously I cannot explain how I can rationally face what may in all likelihood be killing the mother I love so much - I have had a lifelong battle with anxiety and now I find an incomprehensible ability to face this and help my mom. I'm not saying I don't ever become emotional, because I do, but I am determined to be a source of hope and strength for her - all the while accepting what is likely utimately to come.

Stay strong. I will pray for you, as I will pray for all other people who have to personally deal with this and the caregivers who love their PALS and are willing to give so much to help their dear ones.
Hi Nicki..
You have to stay strong for you and your Mother.. I live everyday now since Mom got sick with ALS like "today is the first day of the rest of our lives" I think I try to do the fund raising because it helps me react to the way my mother feels.. I don't know if I am saying this right.. I just want to some how.. somewhere raise enough money so families don't have to do without during this differculty time.. and hopefully make enough money that they can find a cure for this disease..
Thanks, Mike. I would like to do something like that - I've never had a "cause" per se to work for - at least one that really hit home. I would like very much to organize something to help others and somehow make a "dent" in this awful disease!
nsmith555 said:
Thanks, Mike. I would like to do something like that - I've never had a "cause" per se to work for - at least one that really hit home. I would like very much to organize something to help others and somehow make a "dent" in this awful disease!

Well Nicki.. If and when you decide to do something.. I will do my best to help you along.. I organized a golf tournament last year..and had GREAT success.. as I said this year I am organizing a Scavenger Hunt all over the the Ottawa area.. And will try to host another golf tournament later on in the summer.. One thing I did learn last year.. is do not try to do it all on your own.. Try to get as much elp as you can..

I am asking for some help now from the people who write here on the ALS Forums.. if they have any idea's to what ways I can get people to look for.. Please email them to me.. at [email protected] I appreciate any help I can get..
Hi Mike. Don't think that you are rambling or babbling. The feelings you are expressing are being felt by hundreds of people reading this forum every day. You chose to write them down. Some find that therapeutic. Some talk to their God or clergyman. This support forum exists for support and if anyone finds fault with your feelings then they have none of their own and probably won't read your posts again. I will and I'll offer what advice and support I can. It's not easy on any of us to stay optimistic all the time. But we just do the best we can.
Thanx Al..
Was at Rehab with Mom the last 2 Mondays..and that is so much info..and pain inmy brain and heart.. Basically to be told Mom is dying.. I mean I know that.. but to be told that over and over.. "When Momn says life is beginning to get very tiring.. But not quite tiring to look forward to the robins and thier young ones.. Mom always loved that.. I wish so much they could find a cure for this.. Mom asked the specialists why we don't have a poster person for this disease.. and why aren't they asked to fill out a questionaire and maybe find out what causes this disease.. Again Al.. sorry I know I am babbling.. cuz I covered three or four topics..
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