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heidi michelle

New member
Joined
Sep 10, 2007
Messages
2
Reason
PALS
Country
US
State
wa
City
lacey
im new here and i need to reach out to anyone whos going through my situation my boyfrind is 35 and was told this last sept we wnt to the nuro dr trying to find out why he was starting to slur hes words once in a while he did an mri brainlooks fine so you have trouble speeking bring a note pad enraged by his attitude i demanded a 2nd opion from a dr who had better eeplinatin they sent us to chicago unv had no clue why they were sending him there top medical? we lived in a small town 6 hrs away well shane mom flew for the app. fromSeattle thats where we were from before moving to hickvill usa! they talked to him for 3hrs drew blood and said they wanted to do emg? the needle test so we spent the weekend cause wouldt you know dr on friday monday we met with them to do test i had to leave the room my daughter age 2 then was scraming and i was 6months preg with our son i come back and they told us he has als and theres no cure WOW two months latermid nov had trouble swallowing choke on food so they put a feeding tube in him end of jan we came back to seattle area so he could be around his mom and familey we got bipap in mar braces in june and a suction machine july and past two weeks he cant stand on his own or walk without me he refuses to use a wheelchair i have been keeping it togher and taking care of him our daughter who now is 3years and a son 9moths but has went down so fast how can somebody be a girlfriend a caregiver but most off a mother to 2 small needy children who cant get for themselfs or begin to understand if anyone has some help for me i need it i dont go anywhere he cant bealone or go to eat or if i do its for a 90sec throw food in cart and get back home so i have no time to attend a support group and the stress and going going has me beging to melt done and 4hrs a sleep at night im glad this web site was here thank you for taking time out of you very full busy day when all you can do is rember to breath!1
 

Al

Moderator emeritus
Joined
May 25, 2004
Messages
7,960
Reason
PALS
Diagnosis
10/2003
Country
CA
State
On
City
NW of Toronto
Hello Heidi Michelle. Welcome. I hope we can help you through all this. Have you registered with the ALSA or MDA? They can offer help and support other than just support groups. They can help you find respite care so that you can get some rest and look after yourself better. If you get burned out you won't be any help for the kids or your boyfriend. Some of the others here might have local knowledge of Organizations to give you a hand. They'le probably answer later in the day. Take care.
AL.
 

brooksea

Legendary member
Joined
Sep 27, 2006
Messages
5,171
Reason
Other
Country
HM
heidi,

I answered your other post, but will repeat it here: Please get with the ALS Assoc in Seattle area and also if your husband isn't going to an ALS Clinic, see about doing that, as they can be a tremendous help also.

So sorry you have such little ones and have to deal with caring for a PALS also.

You hang in there girl and let us know if you have any luck with the people you need to contact.
 

Judy Penner

New member
Joined
Sep 19, 2007
Messages
1
Reason
CALS
Diagnosis
March 08 2005
Country
CA
State
British Columbia
City
Surrey
I can relate

Hi Heidi
I can so relate to your stress I am the caregiver of my husband and we have two girls ,they are older than your children but are very close too their father. When he was diagnosed with als on 03 08 2005 he work and I worked we had every thing going quite well. now we live on one income and had to move to a rancher style house so we could install a ramp. He wants me to do everything for him I work full time and have to deal with two teenage girls .I finally got in touch with the als social worker and she recommended home care. We now have home care every day except for the weekend and it as made it alot easier they do his personnel care so when I come home from work I have more time to spend with him and the girls. I feel I can relate with you in so many ways if you need to talk let me know
Judy
newcomer to this form
 

CindyM

Moderator emeritus
Joined
Sep 17, 2006
Messages
3,543
Reason
Learn about ALS
Country
US
State
New England
City
Anytown
Hi Judy- what a nice first post! I'm always amazed that folks can be so caring and so supportive in spite of living in very difficult circumstances. Glad you decided to join us, Cindy
 
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brooksea

Legendary member
Joined
Sep 27, 2006
Messages
5,171
Reason
Other
Country
HM
Judy,

Very sorry your husband has ALS. I know it is very difficult for you with a job and teen aged daughters to boot!

Great that you used the ALS social worker, this is good info for the rest of us. Hope you will keep us posted on your situation!
 

stacey76

Member
Joined
Sep 19, 2007
Messages
13
Reason
Loved one DX
Diagnosis
n/a
Country
US
State
sd
City
Sturgis
I relate

I too care for my fiance on my own and our son just turned a year old last month August. I don't get hardly any sleep either but know that there are others here who understand as I do . I know it made me feel better just knowing i'm not the only one going through this.
Stacey
 
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