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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
 
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.
 
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
 
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!
 
I've been through this with my husband, Carrie. If you have any questions, just ask, OK? Yasmin
 
Hi Carrie, welcome to our forum. Looking forward to getting to know you.
 
Hi Carrie, you really have a lot on you, just breath..one day at a time:)
 
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.
 
Hi Carrie

Welcome
 
Welcome to the forums. You'll find a great deal of information and support here. So sorry you needed to join us.
 
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
 
Welcome, Carrie. Lots of nice people here helping each other. Good luck to you and your family.
 
This is a great place to come. You will get advice, information, insight, and lots of love!
 
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
 
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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