Newly diagnosed grandfather and not sure what to expect.

[papasgirl]

Several years ago my grandmother went through several health problems, including a couple heart attacks, alot of hospital stays, and losing her leg to gangrene (not diabetes related). My grandfather (they raised me all my life, so basically my dad) took care of her throughout all of this. He was always so focused on her and taking care of her. She was in the hospital, sent home, and sent back to the hospital last March because she was having problems breathing. Papa visited her, went home Sunday March 29th, and she passed away before he even got home. She died of a massive heart attack. Since the beginning of March 2010, papa has been in and out o f the hospital dealing with "pneumonia." March 13th 2010, my mother called me to tell me that I need to fly home, because things weren't looking good. I flew home that night. The next day at the hospital, my mother, my uncle and I gathered in my papa's hospital room to discuss what exactly was going on. The doctor was surprised because papa did a complete turn around in a coupe of days, but he knew there was something else wrong. So he sent him for testing. They came back with his breathing problems being "degenerative lung disease". After several discussions between the doctors and myself, and after more testing, he was diagnosed with ALS. After taking care of my grandmother for over a decade, and dealing with her passing, his illness caught up with him, and not even a year after, he recieves his diagnosis. Since the diagnosis, I've been immersing myself with research of what ALS is and what to expect, but I would like to hear stories and read stories of what exactly to expect. The doctor told him he has 2 years, but by what I've read that could change drastically and quickly. What should i expect. Any information would be greatly appreciated. Thank you!

 

[sharona]

I really don't have an answer to your question,I'll just tell you to have faith & the doctor doesn't know for sure how long he will live.ONLY GOD knows that answer.God Bless you.
Sharon

 

[tdamess]

read and learn all you can everyone progresses differently and just be there for him and remember it is his journey to do things his way... support him in any way you can

 

[sadiemae]

Hi One thing I have learned since my husband was DX on 9-09, was to do things before they are necessary. Get the PEG tube BEFORE you lose weight. Get the Power Wheel Chair while you can still walk. Get the BiPap before you need to use is 12 hours a day. Go to an ALS clinic NOW! When my husband was DX, we got busy quick, and we did not take NO for an answer. We had no car, and would spend 10 hours going to a one hour doctor visit on public transportation. Do not put anything off because it is to hard or stressful to do. Just DO IT! This disease sucks. but you can fight it. HUGS Lori

 

[Blubear]

Hi papasgirl, Welcome to our forum, but so sad you have to be here. Now, just keep in mind that one of the most curious things about this disease is that everyone is different, and their progression is different. There is no set pattern. When my dad got his diagnosis I called a friend of mine who was a hospice worker and she said she has seen people pass as quickly as 6 months from diagnosis. There are however, people out there who have had it for 20 years believe it or not. There are a lot of people here on the forum who have been here longer than the 2 years that doctors always say. Don't lose hope, it is definitely not set in stone. There are people here who cant eat or talk well, but can get around just fine and drive a car. Others here are in wheelchairs but can still talk and eat. Hope for the best and prepare for the worst. Take things one day at a time, and yes, educate yourself. I have book marked so many pages from here and think I will be prepared for the future and then I learn something new. The above post from Lori is so true. Prepare early if you can. Stress is a huge factor in the progression of this beast, so try and keep things as calm as possible. No doubt that the death of grandma kicked things into high gear for your papa. I am so sorry that this has come to him in this especially difficult time in his life. Thank God he has you hun. Educate, educate and educate....being here and looking at threads that dont seem like much can prepare you for the things ahead. Come here to vent, or ask questions anytime...we are all here for you...Hugs, Blu

 

[CAHPAH]

Papasgirl
Not much I can add to what has already been said. I am sorry to hear about your papa. My wife was diagnosed Sept 07 and I echo the comments above, educate yourself and make decsion sooner then later. Because everyone's path with ALS is differant you never know what you papa's next need will be. I have found this forum to be of great value to me in helping us to cope with ALS and I encourage you to come back often. Nothing but the very best wishes for you and you papa.
Uim

 

[Twinsmom]

Dear Papasgirl,
So sorry to hear about your grandfather. You've been given wise counsel so far. I would encourage you to read the different threads here just to have some perspective and an idea of how varied this disease is. As BluBear shared, there is no "typical" course for this disease. I think the best way to "prepare" would be to know and be clear on what types of medical intervention your grandfather is comfortable with as the disease progresses. Decisions about feeding tubes, ventilator, etc should be discussed when NOT in the crisis so that his wishes are clearly understood by your mom and family.

Celebrate the moments you have with him. Cherish every moment and find the joy each day.

Peace,
Melody