How do you cope?

[cornflower]

My father was diagnosed with PMA when I was a sophomore in high school. Like most teenagers, I had the false idea that we could live forever.. that loved ones would always be there. But as he grew weaker and weaker I realized how wrong I was.

Fearful of his passing, I graduated early from high school and started college the following summer many miles away from home.

I've been away a year now, but visit as often as possible.

What makes this disease so hard to watch is that it's progressive. It seems every time I go home there's some new medicine, some new machine, some new attempt to prolonge his life.

This disease has taken its toll on every member of my family. My mother, who thankfully is a nurse, is so obviously exhausted from the amount of attention my Dad needs. I don't know how she does it all the time without complaining once. I know my Dad appreciates her so much and hates such dependency. I overheard him and Mom talking last time I was home.. he spoke of giving up so he wouldn't be such a burden on everyone's lives. My heart broke.

There are so many things I want him to see before he says goodbye. I want him to see me make a success of my career, walk me down the aisle at my wedding, hold his grandchildren, and so much more.

Since his diagnosis, I have poured my heart into every Father's Day and Birthday card given to him never knowing how many more cards I can give. When I leave to go back to school I always give him "just one more hug" before I leave so save up for when I can't receive anymore. One more kiss on the cheek. One more "I love you".

I've tried to look for the good in things.. I probably wasn't as close to my Dad before the disease. I didn't talk to him as much as I should have. I didn't say "I love you" enough. I try to think that God did this so I would become closer to my father before it was too late.

But I still can't talk about his condition without crying. I don't know if I'll ever stop crying.

I just want him to always be there.

It's difficult for me to organize my thoughts so I apologize for jumping around on topics.

I'd like to know how others cope with these difficult times and what I should do.

[CindyM]

Hi Cornflower. I am sorry for what is happening to your family. Your Mom and Dad are lucky to have a daughter who understands that now is the time to make as many good memories as possible. I wish this disease wasn't so horrible but all the wishing in the world never seems to do any good. feel free to come to us anytime. Cindy

[jimercat]

cornflower,

You are a very loving daughter. It is hard for anyone that has a loved one with this disease. Each person deals with it differently.

I'm sure your father knows how much you really love him and has known all along. Life goes on even with ALS. The best thing you could do for your father is to graduate from college and go for it. Just to see you trying to make something of yourself would make him so proud. I pray he will be able to see it through!

[cornflower]

These kind words mean so much. I hope you know how much I appreciate this.
Thank you.

[edna may]

[QUOTE=cornflower]My father was diagnosed with PMA when I was a sophomore in high school. Like most teenagers, I had the false idea that we could live forever.. that loved ones would always be there. But as he grew weaker and weaker I realized how wrong I was.

Fearful of his passing, I graduated early from high school and started college the following summer many miles away from home.

I've been away a year now, but visit as often as possible.

What makes this disease so hard to watch is that it's progressive. It seems every time I go home there's some new medicine, some new machine, some new attempt to prolonge his life.

This disease has taken its toll on every member of my family. My mother, who thankfully is a nurse, is so obviously exhausted from the amount of attention my Dad needs. I don't know how she does it all the time without complaining once. I know my Dad appreciates her so much and hates such dependency. I overheard him and Mom talking last time I was home.. he spoke of giving up so he wouldn't be such a burden on everyone's lives. My heart broke.

There are so many things I want him to see before he says goodbye. I want him to see me make a success of my career, walk me down the aisle at my wedding, hold his grandchildren, and so much more.

Since his diagnosis, I have poured my heart into every Father's Day and Birthday card given to him never knowing how many more cards I can give. When I leave to go back to school I always give him "just one more hug" before I leave so save up for when I can't receive anymore. One more kiss on the cheek. One more "I love you".

I've tried to look for the good in things.. I probably wasn't as close to my Dad before the disease. I didn't talk to him as much as I should have. I didn't say "I love you" enough. I try to think that God did this so I would become closer to my father before it was too late.

But I still can't talk about his condition without crying. I don't know if I'll ever stop crying.

I just want him to always be there.

It's difficult for me to organize my thoughts so I apologize for jumping around on topics.

I'd like to know how others cope with these difficult times and what I should do.[/

QUOTE]Hi Cornflower. Welcome to this wonderful group. Hearing your words made me think of my Daughter. I have ALS dx a year ago. I have gone from walking, talking & eating, to voice gone, ( have to write every thing) in a wheel chair & not eating by mouth any more (feeding tube) All during that time my Daughter & I have become closer with each passing day, Without her & my loving husband I probably would not be here today, they gave me the will to live & enjoy each day. So I know your Dad feels honored to have your love & caring thoughts, appreciate the fact that you are given this time to do & say all the things you in your heart, Haw many times have you heard others say about a loved one that passed " I didn't have time to say good bye " & wished they could have said "I love you" one more time. Be grateful you have this chance to say "I love you" many more times. EM

[Debohern]

Hi Cornflower,

I, too, am a daughter only it's my mom who appears to have ALS type symptoms (1/3 docs says it's not ALS). I was devestated when I heard those three letters ALS......I have three friends who have had ALS in their families so I knew all too well what was to come. I have come to be thankful though for the time I still have. When my mom told me of two people from our community who passed from ALS, I said and mom, another one died from heart disease, another from cancer, etc. My point is, as I have told my daughter, we will take every advantage we can to be with her grandma and we at least have that time. I will pray that you and your father will have time to share those special moments together. God bless you! - Debbie

[Mark]

Hello Cornflower,

I have a form of PMA which is allegedly not fatal but is progressive. Motor neuron disease in general appears rather mysterious and in need of a great deal of further research. What is happening with your father? It may not be fatal even though it is debilitating. Do you have any live support groups available to you through one of the national associations or a local clinic?

Good luck to you
Mark

[cornflower]

Once again, thank you everyone for your kind words.

My dad has very little use of his hands. You can literally see where the muscles have deteriorated. His legs are weakening as well. He's also does tube feedings to keep his weight up.

However, the main issue is his breathing. He gets very short of breath with just a few steps. Most of the day and the throughout the night he has to stay on a breathing machine.

[Mark]

Is your dad working with a neuromuscular disease specialist? I was wondering whether the breathing and eating difficulties have changed his diagnosis. Have you been able to find outside supports for yourself?
Mark

[rain]

You are a good girl.
I am sorry for your dad.
You must be strong when your father stay on the bed.
Then it will make your father strong.

Good luck.









____________________________
[b]Time is a distance that you can't return by miles.

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[cornflower]

Yes, and the diagnosis remains the same.

We talked to a bereavement caregiver once and that helped a lot. I'm trying to cope with the feeling of helplessness by participating in the local Walk to D'feet ALS. I've also started praying again and I'm trying to find time to go back to church.