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
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