Status
Not open for further replies.

pfowler44

Member
Joined
Apr 2, 2007
Messages
19
Reason
PALS
Country
US
State
Indiana
City
Elkhart
Hello everyone,

I have been reading some of the messages and posts on this site and I don't seem to find anything about Familial ALS. That is what I am dealing with. My husbands family has had 8 deaths that they know of, since 1951, the 2 most recent where his sister and cousin. The first 2 females on the list. His sister was 45, died in Feb 14, 2003, and his cousin was 39, died Feb 5, 2007. The rest of them where men ranging from ages 40 to 65.I also don't see alot about pain. All of my husbands family member had extraordinary amounts of pain. And from diagnosed to death was all less than a year for everyone of them.

Enough of the family history for now. I am very worried about my husband. He has developed pain in his right leg 4 weeks ago. It started out like cramping he said and it has progessively gotten worse since then. It is now almost constant. He has been to his Dr and the ER and they can't find anything wrong with him. He also drools at night in access but not as bad during the day. It so off and on. He also slurrs his speach occasionally, off and on. I am hoping to be able to talk with others reguarding these issues. It is hard for me to talk to people that have not had experience with this awful illness. My heart goes out to all that have this illness and their family members. This forum, I am sure, will be helpful to me now and in the future. I hope that I will be able to help someone too.

Sincerely Pat
 

patricia1

Very helpful member
Joined
Sep 18, 2006
Messages
1,149
Reason
PALS
Diagnosis
7/1999
Country
US
State
newjersey
City
lopatcong NJ
Thats how i started GO to a aLS clinic and good Bless Pat
 

pfowler44

Member
Joined
Apr 2, 2007
Messages
19
Reason
PALS
Country
US
State
Indiana
City
Elkhart
Hi Patricia, I have to go to work 2nd shift. I would like to keep touching base with you.
My husband is having a good day although he has not gotten out of bed for very long. So he said to me one more day. He always does that and that is ok. I know that he is afraid. We are going to get in touch with his doc and get a referal. How long does it take to get a diagnosis one way or the other? Thanks Patricia and god bless you too.
 

Al

Moderator emeritus
Joined
May 25, 2004
Messages
7,960
Reason
PALS
Diagnosis
10/2003
Country
CA
State
On
City
NW of Toronto
Hi Pat welcome. Sorry about your husbands problems. If you use the search feature above and type in familial you will find lots of familial topics on the next few pages. AL.
 

pfowler44

Member
Joined
Apr 2, 2007
Messages
19
Reason
PALS
Country
US
State
Indiana
City
Elkhart
Hi Al, Thanks for the help. I am still learning about this site. My daughter could show me more about this but I have not told anyone I am doing this yet. Right now I think I need this for me. I hope that doesn't sound selfish. I will tell them just not right now. I am a night person so I don't see many people on this site when I am here. Thanks again and soon I will tell more about myself. I have just been so caught up in reading I forget the time. Thanks again, Pat
 

Al

Moderator emeritus
Joined
May 25, 2004
Messages
7,960
Reason
PALS
Diagnosis
10/2003
Country
CA
State
On
City
NW of Toronto
Hi Pat. We all do what we have to do to cope. When you are ready to talk it will be easier knowing a bit about the diseaase. Ask any questions you have.
AL.
 

Cindy S.

New member
Joined
May 7, 2008
Messages
1
Reason
Loved one DX
Country
US
State
VA
City
Virginia Beach
I'm new to this so bare with me. I've also been dealing with this FALS for a little over a year now and trying to bury my head in the sand but it's very hard. My grandfather died of ALS in 1985, the first in his family, age 53, and about 2 years after diagnosis. His family had never heard of the disease before my grandfather was diagnosed...so where did it come from? We found out last April (2007) my mom has it (she's currently 58). She is currently having a lot of pain and I'm trying to research what other ALS patients do to get through it. My mom has a sister she's distanced from but we do know so far, she has no symptoms or the disease. I have a sister and a brother. Between my sister and I we have 7 children. Because of the FALS my brother has decided to not have any children. I know of the people that get ALS, only 5 to 10% of them have FALS; I'm hoping to see other family stories like ours on this forum. But not really because it's such a terrible disease. I'm scared to pieces but have put my faith in God and TRY to live my life as fully as I can. Cindy
 

DeeMichelle

Distinguished member
Joined
Mar 20, 2008
Messages
118
Reason
Lost a loved one
Country
UK
State
Hertfordshire
City
St Albans
Fals

Cindy Hi, Pat Hi
I'm really sorry to hear your stories.

I really wanna touch base with you and anyone else affected by FALS...

My family has familial ALS. My Dad has Bulbar onset and my mum, bless her is doing all she can to help him. To be honest right now I'm worried about her most it's hit her so hard and you can see the grief in her face and in all she does. You can also see the love as she does all she can to prepare food Dad can eat and swallow. Dad's brave and tho' he has little speech left he communicates with little cards he cuts up and writes on. Dad's trying hard to get on with his life and keep his independence. He was offered a Light Writer by the speech therapist, but prefers his cards. I'm so proud of them both. I do miss his voice and I can hear dad's voice in my head

My Dad's brother recently died of ALS and two sisters also had it and maybe one other sister. My Dad is the youngest of 10 and others may have had the gene (we don't know if it's SOD 1 yet) but died of something else.

We feel sure my Grandfather had it, but was not diagnosed. My mum who lived with with my paternal grandparents when she first married remembers that all my grandfather could eat in the end was corned-beef-hash (sloppy mash potato lots of butter, milk and bits of corned beef) and that my grandfather never got out of bed except when my dad carried him.

So that's our story.

Best Wishes

Dee
 

cutecousin

New member
Joined
Feb 8, 2009
Messages
5
Reason
PALS
Diagnosis
02/2002
Country
US
State
Illinois
City
Freeport
Hi Pat:

Our family has had ALS for generations. My grandmother, mother and now me. If your husband is experiencing any questionable behaviors I would encourage that convince him to be tested. Doing this will help you and your family deal with the situation head on. The fear of not knowing is worse than the actual diagnosis.
Good Luck.
 
Status
Not open for further replies.
Top