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Allison Ferraro

New member
Joined
Feb 6, 2008
Messages
4
Reason
CALS
Diagnosis
01/2008
Country
US
State
New York
City
Levittown
Hi Everyone,

My name is Allison and my husband Joe (31)has just been diagnosed w/ ALS in 1/08. He has already lost use of his arms, and now has some trouble with walking. We have been through so much, I'm sure you all know what I am talking about. We are just taking one day at a time. We have two daughters age 7 and 2. Maybe someone can give us some advice as to what was the first thing you did when you were newly diagnosed. I would really appreciate your advice. Thanks for your help.
 

sharonca

Distinguished member
Joined
Nov 27, 2007
Messages
423
Reason
PALS
Diagnosis
12/2007
Country
US
State
CA
City
Mentone
I'm so sorry to hear of your husband's diagnosis. what I did was do lots of research on the various forums and ALS and MDA web sites. Just last week I started on the lithium therapy. This forum and others really allow you to search for everything you can imagine and provides answers you would never have imagined. Just ask and people will respond with whatever wisdom they may have.

Sharonca
 

kelly

Senior member
Joined
Oct 6, 2006
Messages
661
Country
US
State
ny
City
saratoga springs
I get it

Do you have a strong network of friends? I would not be able to deal with this whole thing without my girlfriends. The whole thing is really overwhelming at times. My husband was 39 when he was diagnosed. We also have two kids...4 and 6. Do not be afraid to ask for help. I have found that our local AlS center has been helpful with questions, support, and have loaned us equiptment. Just take things day by day..hour by hour...whatever it takes.
A girlfriends just gave me this great book... This is not the Life I ordered by STEPHens, Speier, Risley, Yanehiro. It really talks about the strength of woman facing extraordinary challenges.
I also come to this forum to gain strength from many of the members posts. I hope I was a little help.
 

Al

Moderator emeritus
Joined
May 25, 2004
Messages
7,960
Reason
PALS
Diagnosis
10/2003
Country
CA
State
On
City
NW of Toronto
Hi Allison. Welcome but sorry for the reason you're here. The first thing I did was make a list of all the things I had wanted to do but hadn't got around to. Having just retired made it easier to go skydiving, see the Grand Canyon, Vegas etc. and I realize everyone can't do that. I did also register with the ALS Society. That's one of the important things too. Feel free to ask anything you need to know and use the search feature above. Most things have been discussed at some time before.
AL.
 

rick/Wpg

Distinguished member
Joined
Jan 4, 2008
Messages
149
Reason
Lost a loved one
Diagnosis
02/2008
Country
CA
State
Manitoba
City
Winnipeg
Sorry to hear of your husband's DX. I feel your pain! Rick, my husband was DX Feb1/08 so we are very new here and very much in shock also.

We live in Canada and this is what the ALS Society has done for us.
The Client Co-ordinator for the ALS Society in our area met with my husband and I in our home this week.

She has scheduled both of us for an all dayer at the clinic this month. We will be seeing a Physiotherapist, Occupational Therapist, Nutritionist, Speech Language Pathologist, Social worker, Respiratory, Physiatrist.

She took the time to walk us through all the services the ALS Society provide. Diana really gave us hope and encouragement as she answered so many of our questions. We felt like we had some direction. We were so amazed how these wonderful people have put into place so many services, support, equipment, etc. to help people like us.

Our hearts go out to you and your family!
Rick and Joan
 

siamese9

New member
Joined
Jul 5, 2008
Messages
0
Reason
Other
Country
US
State
NY
City
Port Jefferson
My heart goes out to you...

I couldnt image what you must be going thru...I just wish you all the best in your journey thru this. Allison have you always lived in Levittown or did you live out towards the sachem area as a teen?
 

fiddleplayer51

Distinguished member
Joined
Mar 24, 2008
Messages
337
Diagnosis
03/2008
Country
US
State
VA
City
Harrisonburg
Welcome, Allison. I'm so sorry about your husband. Y'all are such a young family. My heart goes out to you. Looks as if you've gotten some good advice here. You also need to think about forming a care team. Lining up local outside help is crucial to getting through this.

There's a thread in the "General Discussion About ALS/MND" forum called "Forming a care team". Go to page 13 of that forum and you'll see the "forming a care team" thread about half-way down. There are some excellent tips there on lining up help.

Keep us posted about how things go with you and your family. I wish you all the best. Feel free to ask about any and all aspects of dealing with this.

Jane
 

Barbie4

Distinguished member
Joined
Mar 26, 2006
Messages
139
Country
CA
State
Ontario
City
Everett
Hello Allison

Hi Allison:

So very sorry to hear about your husband diagnoses and so very young too. My friend Gail was diagnosed two years ago at the age of 43 and has three young children.

although everyone progresses at different rates, my advice is to take as many vacations and do as many fun things together as possible. Get a video camera and film as much as you can.

I agree with surrounding yourself with a great supportive network of friends to help you all through the continuous hurdles of ALS.

I wish you and your husband strength and courage.

xo Barb
 
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