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allysonsmith

New member
Joined
Sep 18, 2007
Messages
3
Reason
Loved one DX
Diagnosis
family
Country
US
State
ca
City
san diego
Hello everyone,
My father has recently been diagnosed with bulbar als and is only 58. It took over a year for his diagnosis. He seems to be getting worse and has refused to get a feeding tube (as of now). Reading your discussions and stories has given me a lot of strength.
Thank you for your support,
Allyson
 

Icanmanz

Senior member
Joined
Jul 14, 2007
Messages
947
Reason
PALS
Country
Uni
State
Texas
City
Tomball
Hi allyson Welcome to our forum. Am sorry to hear about yur father's diagnosed. I am not a PAL. I used to be a CAL to my late son, but I am still here. I can't leave. This is a very helpful forum, the members are super nice, and will answer your questions the best way they can. Feel free to ask any question. Mmmmmh! You said your dad refuses to get a feeding tube. I wish I could be of some help. My son had a feeding tube, and to me it was a smart decision to do so, because it can get pretty scary later on. May God bless you all!

Irma
 

mrstadpole

Member
Joined
Sep 12, 2007
Messages
26
Reason
Loved one DX
Country
US
State
California
City
Cathderal City
In the same boat..

Hi there!

My dad was also diagnosed about a year ago.. after a year of tests and aggrivation. He's 53 and sounds just as stubborn as your dad. :) He's begun to accept that he will soon need a feeding tube, as he is choking on food and drinks more and more often. :( He is still fairly mobile and only has to use his wheel chair for an extended journey.. like if we want to take him on a walk. He cannot speak.. tries with all of his might, but usually has to depend on his speech machine. We brought him out to our home this weekend and just had a wonderful time with him.. we made sure all the kids and grandkids were there and he was able to relax and enjoy the days with no worries, for a change. I am new to this forum and have also received a lot of great support and advice. If there is one thing that I have learned from all the PALS and CALS here is that you have to remain in good spirits and focus on the here and now.. not what will be. I will keep your family in my prayers.

Kari
 

allysonsmith

New member
Joined
Sep 18, 2007
Messages
3
Reason
Loved one DX
Diagnosis
family
Country
US
State
ca
City
san diego
Thanks!

Wow! I thank you all for your advice and prayers. Does anyone know much about familial ALS?
Thanks,
Allyson
 

lak48837

Member
Joined
Mar 3, 2007
Messages
10
Reason
Loved one DX
Country
US
State
MI
City
Grand Ledge
Allyson,
Welcome but sorry you had to join. Just a tid bit about feeding tube issues. I hope your Dad changes his mind. I think many people do once the time is right. My Mom, who had als, never did and I think the end is a bit rougher for those that choose not to have a feeding tube. It's just personal choice. Good luck and hang in there. This group of folks is very helpful, supportive and is a wealth of info and opinions when you feel like you are alone. Take care and God Bless.

Laura
 

liz

Senior member
Joined
Nov 9, 2006
Messages
642
Reason
PALS
Diagnosis
11/2006
Country
US
State
NY
City
Albany
Hi Allyson -

Welcome to the forum. You can use the Search feature along the tool bar up top to research Familial ALS or any other subject that interests you. This will lead you to the forum's archives of past discussions of these topics.

Liz
 
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