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STACI

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Mar 9, 2005
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i am new at this site. my dad was diagnosis in 10/04. i can not explain my anger or saddiness, just like everybody else who has find out there love one has als. he did retire from his job on 1-1-05 due to he is a computer programer and can not use his right arm at all. that was the reason he went to the doctor. today he does not use his right arm, weaken at the left, and can not walk very long without having pain. even my four year old ask why he was no muscle in his arms. how can anyone explain that to her? i am very scared about losing my dad, but i think i did finally except it some what. i am just tired about the talking about death in my family now. is this common feeling when first diagnosis, or i am just going crazy?

staci
 

Al

Moderator emeritus
Joined
May 25, 2004
Messages
7,960
Reason
PALS
Diagnosis
10/2003
Country
CA
State
On
City
NW of Toronto
Hi staci. i don't tHink your feelings are any different tHan anyone else's. read some of tHe old posts on Here and you'll find tHat we're all pretty mucH in tHe same boat. some get over tHe feelings quicker tHan otHers and get on witH day to day life. you can't let it consume you. enjoy tHe time you Have witH your fatHer. He is still tHe same person inside and i am sure He is feeling tHe frustrations of tHe disease as well. eacH time you notice tHe little tHings you can't do you Have to cHange your tHinking to be Happy about tHe tHings you still can do.
tHe als society Has a good booklet dealing witH How to talk to cHildren about als. if you go to tHe Homepage to find tHe society nearest you and give tHem a call tHey will send it out to you.
glad you found us and if you need to laugH or cry or vent tHis is a good place to be.
we Have a good buncH of regulars tHat Hang out Here and tHere is a lot of good information flowing tHrougH Here. good luck.
 

rosebud

New member
Joined
Mar 10, 2005
Messages
3
Hi staci!

i'm new to tHis site as well. we (my 4 siblings and i) were witH our mom
wHen sHe got tHe diagnosed tHis week. sHe Has been diagnosed witH ms, msa, psp and
now tHe dr. says als. we are lucky in tHat we Have tHe support of eacH
otHer and we don't all fall apart at tHe same time. mom was told sHe
could Have ms, msa, psp so being given a diagnosed of als just cHanges tHe
label- not tHe outcome. we Hope to find a support group in tHe nortH
toronto area but so far Have Had no luck. i get great comfort from
forums like tHis and i Hope you will too!

sandy
 

me

Distinguished member
Joined
Apr 26, 2004
Messages
216
Sandy & staci - welcome, this is the place to be. i am sorry we all had to meet under these circumstances, but what a blessing that we've met. there are some great people here at all stages of this thing and touched by it in different ways. as al says, all the feelings surface at some point during our discussions and those that are up, comfort those that are down, and then we switch places! melissa
 

DebNS

New member
Joined
Mar 16, 2005
Messages
5
Reason
PALS
Country
CA
State
NS
City
Halifax
I'm so glad i found this site. I'm at a loss too. my dad was diagnosed the week before christmas after a year of tests. my mom and i discussed what the future was going to bring as she was waiting for heart surgery. dad was hoping to keep well enough to get her through her surgery and she was hoping to be well enough to care for him . . well she didn't make it. . .she literally dropped dead five days before surgery while at the mall in jan at the age of 62. i will never forget when i got to my father's house - the rcmp beat me there. . all he could say was i am the one dying not her . .so we have had a double whammy and there are days that i feel like the world is on my shoulders.

my dad is about three years into his als and since my mom died i have noticed him become weaker and weaker . . . i have run the gulmat of emotions. my kids were really close to both my parents and still have not recovered from the loss of their grandmother - my five year old still cries herself to sleep some nights. . my ten year old knows her grandfather is sick but i don't know how much information is too much especailly after the recent and unexpected loss of her grandmother. there are days that i am just numb and others that i just up and down. my dad just started therapy of riluzole so we are hopeful this will slow things down.

it feels good to just 'talk' to people who are experiencing the same thing . . .to know i not alone . .
 

Al

Moderator emeritus
Joined
May 25, 2004
Messages
7,960
Reason
PALS
Diagnosis
10/2003
Country
CA
State
On
City
NW of Toronto
Hi deb. you are not alone. we are Here for you and if you Have any questions we'll try to answer tHem .i am so sorry for your situation. i wisH i could say i know How you feel but i don't. tHe best we can offer is friendsHip and a little Hope. Hope to get tHrougH tHe dark days and sometimes a little Humor to Help give us tHe good days. we are a diverse buncH but a loving and caring buncH. welcome.
 

DebNS

New member
Joined
Mar 16, 2005
Messages
5
Reason
PALS
Country
CA
State
NS
City
Halifax
Thank you. - everyone's love of living is so evident and i am encourage by the spirti that i see in spite of the adversity and challenges that everyone speaks of. i guess the hardest part is that i don't want my father to suffer but there is that selfish part of me that wants him to hang on as long as he can as i don't want to lose him - i always thought they would be around another 20 years or so.

they are/were such a big part of our lives and there is a hole already that is getting bigger everyday. my mom was my best friend and i thought we would care for my dad together. . .i was blessed with wonderful parents and i feel guilty at times for being so blessed but yet still wanting more. . .
 

me

Distinguished member
Joined
Apr 26, 2004
Messages
216
Deb - it's wonDerful that you have been so blessed, it Definitely gives you something to cherish in your memories. don't feel guilty about wanting more, we're only human. i would imagine we all have that feeling at one time or another. for me, i think that is one of the harDest feelings to overcome....there is just so much living to do and my husband and i have such an awesome relationship and it just doesn't seem right that he would have to struggle in these ways. but, we never know the big picture and how good will come from the struggles. i have seen with the people here that their relationships are stronger and closer with their loved ones because of the illness. anyway, i guess that's a little of what i've been feeling. trying to look at the positive but sometimes feeling overwelmed with the not so positive. stay strong Deb. & stay with us here as long as you need. -melissa-
 

Timshelper

Distinguished member
Joined
Nov 11, 2003
Messages
154
Dear debns,
hi and welcome to the forum. thinking that you would feel selfish because you want to hold onto your dad is something you have to get out of your head right now. i'm not sure where your dad is in his illness right now but holding onto the hope he will be here another day is living for the moment and that is what pals and cals have to do. this is a positive and i think more people from what i have read on this forum that have the positive attitude and keep the faith and hope and reach out to people like the ones that are on this forum that have a wealth of info will help you and your dad overcome some of your darkest days. there is a saying that no news is good news with als its the opposite we want as much news as we can find hear, read, connect and get answers to so we can beat this blasted thing. use this forum as a tool to ask questions,vent, be emotional, share a good day or an accomplishent. we are all interested and we are trying to help one another in any way we can and deb it works trust me. people on this forum have intellect, humor, compassion and love. the journey may be long and rough at times but the day will come when there will be a cure and it will be because of people on forums that made the difference. that difference could just be you, think about it.
with warmest regards
kim(cals)
als about loving someone
 
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