My dad has ALS/Lou Gehrig's disease....scared

[missypie]

I'm so so sorry. Being alert and in my right mind, but totally immobile, is my worst nightmare. The dad of one of the kids at school has ALS. He was an airline pilot, so he had to stop working a lot sooner than many other folks with ALS. We don't see him out anymore-he can't move or speak-but when I see his wife, she looks so stressed.

It may be difficult but as the disease progresses you must persuade him to tell you and his wife EVERYTHING with respect to his wishes. I'm not talking about funeral plans. I'm talking about when he can't breath on his own, does he want to be ventilated? Does he want to have the TV at certain times of the day, what type of shows, what movies (maybe he can make a list), does he want to be read to, will he want visitors afer he can no longer speak (if so, who, and who not)?

My heart goes out to you all.

 

[dumboiu]

One of the greatest theoretical physicists of our time, Stephen Hawking, has ALS. Here is a section of his website that deals with his illness.
http://www.hawking.org.uk/disable/dindex.html

 

[hentob]

I hesitate to post this, but I figure you will not click on it if you dont want to.

Besides Debbie Tope's site, there is a site called LutherOutLoud. It is written from a man's perspective. He writes right up until his death (yes, he passed away ) , but he does it with such humor. Yes! Humor! Odd, but comforting in a weird way.

http://www.lutheroutloud.com/

Also, you mentioned your dad enjoys the woods. There is an unconfirmed link between ALS and Lyme Disease. As well as ALS and heavy metals (don't know what your dad does for a living).

Research! Leave no stone unturned. FIGHT for answers and for a cure I HATE this DAMN disease!

 

[scoutsmom99]

 

[mannasn]

It may be difficult but as the disease progresses you must persuade him to tell you and his wife EVERYTHING with respect to his wishes. I'm not talking about funeral plans. I'm talking about when he can't breath on his own, does he want to be ventilated? Does he want to have the TV at certain times of the day, what type of shows, what movies (maybe he can make a list), does he want to be read to, will he want visitors afer he can no longer speak (if so, who, and who not)?

My heart goes out to you all.

You are in our thoughts and prayers here as well. ALS is such a tragic disease. I'm so sorry.

As difficult as it may be to discuss, I agree with the previous poster. No doubt that your fathers' healthcare providers will share this information as well on the importance of a living will/advanced directives.

 

[minniecarousel]

You might want to see if there are support groups for the patient and for family members in your area. If he's not ready to seek out a group yet, you might want to. Hang in there - I'll keep you and your Dad in my prayers.

 

[jacksonsmom]

Thank you all for your kind words, hugs, prayers, web site links, etc! It means so much. This is all a shock. He has been having problems since around December. When his doctor could not figure out what was wrong (ruled out MS, etc) That was when he was sent to an ALS clinic. He just saw the dr at the ALS clinic last week. The dr there said it looks like ALS and he is pretty sure he has ALS. He goes back in May to see where he is at.

Thank you for all the links. I will look at them, right now it is so hard to read information because so much of it is discouraging.

This is all such a shock. I guess I was expecting something like MS or Parkinson's, etc. Not that those are not serious, just I didn't expect something like ALS.

He has always taken good care of himself, never smoked, very rarely drinks, keeps in shape, eats healthy, etc. Not someone you "expect" to get such a serious illness.

Thank you again for all the kind words. They really mean more then you could know.

 

[jacksonsmom]

I forgot to add, someone ask what his name is...His name is Frank.

 

[MosMom]

My grandpa died of ALS in 2000 and was on a few experimental drugs. Find out what drug options are out there right now and what he can do to prolong his life. There are people out there with ALS who have lived for 20 years or more with the disease, granted their numbers are small...but there is hope. Find out what he can do right now to improve his chances of survival. ALS support boards are a wealth of information. There are ways to help him keep his independence throughout his illness. For instance, if he finds that he has a hard time holding a fork/spoon to feed himself...you can buy large adult sized rubber utensils that make it easier for him to hold. There is just a ton of information out there that will help you and your dad.

I'll keep you both in my thoughts.

 

[MUFFYCAT]

My heart goes out to you and your dad, I'm so sorry.

 

[Big V]

Frank will be in my prayers.

 

[The Mystery Machine]

Sending you some prayers....

 

[Muffy]

My uncle died of ALS several years ago. I'm so sorry to hear that your dad has this and at such a young age. They have made many advances since my uncle died that your dad can benifit from. The famous scientist, Steven Hawkins, has lived many years with ALS. He goes around the world giving speeches with the aid of his computer and wheel chair. He also went on to marry his nurse and live quite a full life. Sending prayers for your dad.

Muffy

 

[Kristi1357]

 

[Kitty 34]

Saying lots of prayers for your Dad.

 

[denisenh]

Your dad Frank, and you my dear are in my prayers. There are many treatments and medications available now that help with the discomforts of the disease, so thank goodness for that.
Take care and remember that you have friends here ready and willing to be there for you if you need us.

 

[Trish Bessette]

Oh my You and your Dad are in my prayers. I can cry for both of you. My sister lost her best friend last year from ALS, she was only 30. I know all to well about this awful, awful disease.

I know you will be there for your Dad as that is what he needs. Even though he may be a quiet man, you need to talk to him. This disease moves very quickly in most people. My sisters friend was gone within 3 years.

Please PM me anytime if you just want to chat. Again, I am so sorry to hear you are dealing with this ruthless disease. Many prayers will be said for your Dad.

 

[winniedapooh]

 

[dizagain]

My Grandfather died of ALS also. He was always such a positive, vibrant person and that never went away. He did take some of the trial drugs and I don't know if they actually helped or not...always worth a try. He was blind already, but extremely active - he kept walking every single day even when it was hard. He left us in his sleep before he became totally bed-ridden - which I consider very fortunate. The speech difficulty was hard too. Just be there for your dad and encourage him to remain as active and "normal" as possible - I believe that helps a great deal. Prayers for you and your dad.

 

[Dan Murphy]

Hope, positive attitude! Attitude is so important in so many illnesses. Not giving in, not giving up hope. Researching all avenues, support. ALS, as with so many diseases, is a tough one. However, many do live a long time, as said here. And, as said also, someday it will be beaten, maybe soon, maybe now. My prayers are with your dad, with you, his support. God bless.