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Carrie C

New member
Joined
Mar 9, 2012
Messages
4
Reason
CALS
Diagnosis
07/2011
Country
US
State
MA
City
Georgetown
Hi,

My husband was diagnosed in July 2011. Limited mobility and losing ability to talk - very weak. We live in the Boston area and have great resources, clinical trials, etc. I am here to get/receive support and look forward to connecting with caregivers at all stages.

Thank you so much in advance!
Carrie
 

Carrie C

New member
Joined
Mar 9, 2012
Messages
4
Reason
CALS
Diagnosis
07/2011
Country
US
State
MA
City
Georgetown
I would also like to lend support to everyone out there. I also have a daughter with a severe disability so I am used to dealing with adversity. Glad to be part of the group.
 

jessielf

Active member
Joined
Dec 26, 2011
Messages
66
Reason
Lost a loved one
Diagnosis
08/2011
Country
US
State
WI
City
wis rapids
Hi Carrie, welcome and sorry you have to go through ALS too. My mom got diagnosed last Aug. My mom is still walking but barely she gets tired fast has a walker w a seat but hopefully soon she will get a scooter chair. She can barely too talk and swallow. At her last neuro appoint she was told she was getting worse so she has/had ALOT of appoints this month due to her decline but she is still going strong. There is a bunch of great people her! Thats great you have wonderful resources to go to!

Jessie
 

Carrie C

New member
Joined
Mar 9, 2012
Messages
4
Reason
CALS
Diagnosis
07/2011
Country
US
State
MA
City
Georgetown
Thank you for your quick reply Jessie! This group really cares! We have a chair ready to go, but my husband would rather deal with the walker until he feels he really needs the chair, In December, he was using a cane and had a terrible fall which took him to the walker. The staff at Mass General Hospital are great. You feel like you have received a big hug after every visit. But, I know the reality of this disease. I work full time and sometimes the anxiety makes me lose my focus. It's best to take it one day at a time. Hope all is well in WI! No snow in Boston which is very odd!
 

cervus

Senior member
Joined
Mar 18, 2011
Messages
923
Reason
Lost a loved one
Diagnosis
11/2010
Country
CA
State
AB
City
Leduc County
I've been through this with my husband, Carrie. If you have any questions, just ask, OK? Yasmin
 

Barbie

Extremely helpful member
Joined
Dec 29, 2007
Messages
2,659
Reason
Lost a loved one
Diagnosis
01/2007
Country
US
State
FL
City
orlando
Hi Carrie, welcome to our forum. Looking forward to getting to know you.
 

joni51

Senior member
Joined
Sep 8, 2010
Messages
985
Reason
Lost a loved one
Diagnosis
10/2010
Country
US
State
Al
City
Valley
Hi Carrie, you really have a lot on you, just breath..one day at a time:)
 

st123

Distinguished member
Joined
Feb 2, 2012
Messages
298
Reason
Lost a loved one
Country
US
State
Michigan
City
Mid
Hi Carrie, welcome! There are a lot of great people here who can offer valuable advice. I've only been here a month or so and they've helped me tons.
 

rachelg

Distinguished member
Joined
Apr 14, 2009
Messages
226
Diagnosis
05/2009
Country
UK
State
Somerset
City
Yeovil
Hi Carrie

Welcome
 

momap53

Very helpful member
Joined
Jul 2, 2011
Messages
1,640
Reason
PALS
Diagnosis
05/2011
Country
US
State
GA
City
EGA
Welcome to the forums. You'll find a great deal of information and support here. So sorry you needed to join us.
 

HelenL

Very helpful member
Joined
Dec 17, 2010
Messages
1,583
Reason
PALS
Country
US
State
MA
City
Southborough
Hi Carrie, I'm from Mass. as well, and go to the UMass clinic in Worc, to Mass General for a clinical trial.

One thing I've learned is to not try to walk too much if it's affecting your arms and shoulder, mine were so painful from trying to hold onto the walker, I finally started using the scooter for everything.

There's an organization on Cape Cod called Compassionate Care ALS, which has been wonderful to me in supplying equipment to me. You should look on their website and sign up with them if needed.
Good luck,
Helen
 

brooksea

Legendary member
Joined
Sep 27, 2006
Messages
5,171
Reason
Other
Country
HM
Welcome, Carrie. Lots of nice people here helping each other. Good luck to you and your family.
 

KissJ

Distinguished member
Joined
Jul 6, 2011
Messages
376
Reason
Loved one DX
Diagnosis
05/2011
Country
US
State
Pennsylvania
City
Greensburg
This is a great place to come. You will get advice, information, insight, and lots of love!
 

dldred

Senior member
Joined
Mar 31, 2009
Messages
529
Reason
Lost a loved one
Diagnosis
03/2009
Country
US
State
NY
City
Chateaugay
Welcome Carrie, I am sorry you have to be here, but you will find some great people here who will help you in so many ways. I have made so many great friends here and I hope you can do the same. Good luck to you and your your husband.

Dana
 

hangingon1

Distinguished member
Joined
Jan 29, 2012
Messages
199
Reason
Lost a loved one
Diagnosis
09/2009
Country
US
State
Georgia
City
Chamblee
I think you have come to the right place. You will need all the support you can get, and we on this forum were just like you at one time. All of us are learning about ALS and care-giving. Spend time reading the posts. They are a wealth of information. Realize that you have the courage to do what you normally do not do. ALS is cruel on a caregiver. It hurts physically and mentally. Hang in there and realize that there are many people here to give you comfort and advice. You will make it.
 
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