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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.

I am new at this and my heart aches for everyone. MY husband Joe(31) went to the Dr in November 07 for falling down while changing. There were other things leading up to that, he was falling at work,he was very tired, and he was having trouble with dressing(buttons,and tying). This all was going on since the summer, but we just kept putting it off b.c we had just moved into a new house and he was working 2 jobs.He went to our regular MD and he referred us a Neurologist. Who said he believed Joe had all symptoms of a Nueromuscular Disease at that time they weren't sure which one. To make a long story short we went to Columbia University Medical Center, and it was they who felt that Joe might have PLS b.c he didnt have typical signs he also showed signs of Multifocal Motor Neuropathy. They wanted to try treatment with IVIG which didnt help just made him very sick and that's when we received confirmed diagnosis of ALS. (1/10/08). In between this time Joe has lost use of his arms. He can no longer lift his arms for long periods. I most of the time have to feed him or his 7yr old daughter who loves to help her father. We also have a 2yr old daughter. Right now he is doing ok. Although he has something they call foot drop and we are hoping to get this week an AFO?

Anyway, I have been reading all this stuff and it really scares me at what Joe will one day be dealing with. He doesnt talk about any of this. And he keeps telling me he just wants to take one day at a time. Which I guess is what he himself needs and I know from reading everyone's hardships that this is not going to be easy for anyone. Especially Joe. I will be here for him no matter what. We are going back to CUMC at the end of March to hopefully get into one of these trials I have been reading about. He only takes vitamins right now. We have other issues to deal with too. We have no insurance right now we are struggling financially. But I keep telling myself that all that seems so silly when you have such a horrible thing you are facing (ALS).

I am glad that I have this place to visit. I know that I am not alone. My thoughts and prayers are with everyone.

Allison Ferraro
 

CindyM

Moderator emeritus
Joined
Sep 17, 2006
Messages
3,543
Reason
Learn about ALS
Country
US
State
New England
City
Anytown
And ours with you, Allison. I am sorry to hear about your husband. Glad you dicided to join us, though. Feel free to write anytime about whatever is on your mind. Cindy
 

dadsgrl4life

Member
Joined
Feb 3, 2008
Messages
24
Reason
Loved one DX
Country
US
State
Virginia
City
Stafford
Allison,

My dad too has those symptoms and is going to the dr again on Friday and will hopefully be diagnosed with ALS, instead of A typical ALS. My dad has the same thing going on with his right arm. Its getting harder to watch him go through this. Im 22 and having a hard time dealing with my dad having this, I hope your two daughters will understand the diesase and hopefully they wont react out because of it either(I know how kids react to different things that deal with parents..day care teacher for 8 years). But my thoughts and prarys are with you and your husband.

Heather
 

Beebe

Distinguished member
Joined
May 2, 2006
Messages
319
Diagnosis
4/2006
Country
oce
State
new jersey
City
forked river
Hello Allison

Hello, Just wanted to say my heart goes out to you. Your children are so young and ALS is a rough journey. The Forum is the BEST you'll find a lot of info and comfort here. One day at a time is what we do! My son-in-law Jack had a feeding tube inserted today. Jack is 43, my daughter his wife is 36. She has Advanced Breast Cancer she is on Chemo, doing very well considering. If only she could get a nights sleep, that would help a lot. Jack can't move his arms so needs something throughout the night. We are here for you. Fondly, Beebe
 

Lorie

Senior member
Joined
May 17, 2007
Messages
546
Reason
Loved one DX
Country
Uni
State
Alabama
City
Mobile
Heather, Allison and Beebe

My brother cant use his Arms either. I is hard to watch. But we are their life lines. I fed Tim this morning and did other things for him. It is the hardest thing to see him go through this, than anything I have ever experienced in my Life. And that hasn't been easy.

Alot of times I feel like my Heart is being eat up with Cancer. I try real hard to stay Focused on what 's best for him. We do cry sometimes. But we don't want to sit around and have a pitty party. We are a dedicated part of his team. My family don't get the extent of it as I do. Always being the brains of the family. I have to give them complete instructions on everything.

We just have to do the very best can. There are no easy answers. Just support and Love deeply. That person feels it and I think it is a very important part of their survival.

I know by giving all I have to Tim. I get back tri-fold in my heart. No sacrifice for me.

Lets hang together, talk about it. Support each other. There are many times we can say things on this Forum that we probably wouldn't say anywhere else.


Thinking of all of you. I wish you Strength, Courage, Patience and most of all
Unconditional Love. This disease will test everything about you, as a CALS and a Family member.

We just have to remember what our PALS is constantly going through. And their needs.

Lorie
 
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