give it to me.

[heaton.up]

Hello,
My name is David and as of the past 2 days ive been trying to cope with my father's diagnosis of ALS. Weve been living the past 3.5 months with a diagnosis of CIDP which has had him on up to 70mg of prednisone daily. Not to mention a 3 times a week regiment of blood transfusions to help counteract the non existent CIDP, as of 2 days ago noon a specialist has ruled out CIDP as the cause and instead re-diagnosed him with ALS. Through all this he been weakened not only by the heavy onset of ALS but also the total exhaustion of more than 20 blood transfusions in a matter of 2 months. My dad is such a great man, and one of the most solid things in my life and yet i know that at some point he wont be able to breathe on his own or some other basic muscle will cease to function and that at his weakest hour he will pass and knowing this tears at the fiber of my existence. I dont know if its selfish for me to be this sad because i know that this diagnosis has been so hard on him. The ups and downs are just the worst. Seeing the strongest person in my life struggle at blowing his nose after helping him with strenuous yard work only months ago is killing me inside. The realization that all the fun of walking around at drag races, camping, going to KU football games, and hell even mowing the yard with him is long passed and that for the next X number of years im going to witness my dad waste away until he simply cant live anymore. I just want to give him my body and carry this so that he can live the long, perfect life that this great man deserves. Please, take me instead.

I just needed somewhere to let myself go, thanks so much for reading.

 

[Alyoop]

David, I am so very sorry that your dad has been diagnosed with this awful, relentless disease. Sadly we are not able to swop places with our loved ones, but we can love and support them.
You sound like a wonderful, caring, young man. I bet your Dad is so proud of you?
Ask any questions you want, people here with care and support you, in every way they possibly can.

Take care
Aly

 

[Bhappy]

David,
I too am so sorry to hear about your dad's diagnosis. You came to the right place. As Aly said, the many caring people on this forum will help you. Please include me as one of them. Don't be too hard on yourself.

Take care,
Mary

 

[Zaphoon]

Welcome to the forum, David. I'm very sorry your father was diagnosed with ALS and sorrier still that he had to go through all of those unnecessary blood transfusions.

Thank you for being there for him! You are making a world of difference for your dad!

 

[Ms. Pie]

Dear David. My heart breaks for you. Your father has been through a lot already. You're not selfish at all. It's just that this part of loving someone is so hard. Please feel free to post and "talk" to us any time. There are a lot of knowledgabela, gentle and loving people here. You and yours are in my thoughts and prayers. You're a wonderful Son.

 

[gotverve]

David, I'm so sorry about your Dad's diagnosis. I truly understand. My Mom was diagnosed in March 2007 and passed Dec 2008 of bulbar onset. I found that I grieved as each new loss of function occurred and I think you'll probably experience that as well. Educate yourself and try to keep life as normal as you can, for his sake especially. Do look forward though as to what his needs might be because it does help to be prepared.

My folks lived on a farm a hr north of Topeka and I live near Baldwin City. If you ever want to talk, I'm here! I'm also on facebook.

 

[Ms. Pie]

The worst part of my diagnosis is what it does to people I care about. That hurts me so much. Please try and be strong for your Dad. May God watch over and comfort you and yours.

 

[momap53]

May god bless you and your family, David.

MaP

 

[twinmommie72]

Bless your heart. It's ok to feel the way you do, and it's ok to cry. Sounds like you have a phenomenal Dad, because his love reflects in you. This disease robs us of so much, however it won't take away the love we have. My heart aches for you because it is so unfair. My heart also smiles for you because of the wonderful memories you've been blessed with. Remember you aren't alone. Lean on us. We will hold you close and be here anytime you need us.

Hugs

 

[heaton.up]

Thank you all so much!

Your kind words of wisdom and support have helped me and my family so much already. It is so great to know that people care and that i have so much more to learn about handling this situation the best way possible.

I am eternally grateful for all of your compassion.

-David

 

[notme]

HI

If you haven't done so already--contact the ALSA. They will help your family as you go through this horrid process. They offer many kinds of support. The VA does as well, if he's a VET. If not a Vet, he'll automatically qualify for disability if he's not on either already.

Hugs and prayers with your family.

Live each day to its fullest.

 

[Sequoia]

Welcome to the Forum family! Praying for you and your dad! You love him sooo much, just really be there for him now, and support him through whatever lies ahead. Remember that love is what matters the most at a time like this. I am sure he loves you very much and it is wonderful he has you by his side.
Try to be grateful for all those precious things your dad shared with you, rather than let it drag you down now that he cannot do those things. Being in the present moment with love with him, is what he needs the most. Blessings on you and your family!

 

[Gma'sMeMe]

Welcome to the Forum family! Praying for you and your dad! You love him sooo much, just really be there for him now, and support him through whatever lies ahead. Remember that love is what matters the most at a time like this. I am sure he loves you very much and it is wonderful he has you by his side.
Try to be grateful for all those precious things your dad shared with you, rather than let it drag you down now that he cannot do those things. Being in the present moment with love with him, is what he needs the most. Blessings on you and your family!

Sequoia- I just wanted you to know that your words of encouragement here were helpful to me too! (and I am sure many others) You have a big heart to be able to counsel/advise others when you yourself are afflicted by ALS. I hope that knowing you help others helps you too! Love, Mary

 

[brooksea]

Very sorry about your father. Hang in there as best you can. You sound like such a great son!

You can also contact the MDA. They have a loaner closet just like the ALSA. In our state, they both have ALS support groups. The MDA used to offer grants for equipment, but they stopped a while ago. You never know, being registered with both associations could only be of help for you father in some way.

If you have any questions, please don't hesitate to ask and we will try to answer.

 

[Gentleman Jim]

David, you would not be normal if you did not have those feelings of loss and confusion. You would not be normal
if you did not want to seek answers. You would not be normal if you didn't have the idea that you are totally
helpless, under normal situations. Valley's are to learn in, not live in. You will now move from the natural to
the Super Natural.
We are placed in these hard times to see what we are made of. I can remember the day when my son
realized I could not lift a thousand pounds over my head with one arm. The days when I told him of my
faults and frustration due to poor decisions. He didn't love me less, it just gave him a new goal. The goal
of reality. Where the rubber really meets the road.
No body in there right mind would wish troubles or hard times on anyone, however, it is those times that
tempers you. Steel when it is immersed in hot oil, it screams and becomes hardened and tempered.

Your relationship will be challenged not only by your memories, but by your future. A new sacrifice of
time, talent and treasure. It is easier to act your way into a new way of feeling, than to feel your
way into a new way of acting. Acceptance is not a defeated attitude. Your attitude, not your
aptitude will control your altitude.
As a rule, a broken bone when it heals is stronger than it was before it was broken. The irritation
of a grain of sand in an oyster will produce a beautiful pearl. All the water in the world does not
sink a ship unless it gets inside.

And you will not be defeated in the long run. Our lives are a marathon, not a sprint. You will look
back and see the one set of foot prints in the sand. Not that you are alone, but that you have
been carried through this tough time.

Love never seeks its own, love never fails, and you have described a love for your dad that will
overcome the sadness that comes with the territory. A rubber band doesn't function unless it
is stretched. A turtle never gets any where till he sticks his neck out. And you David, will
experience a deeper love for your father than you have ever known.

God Bless you brother,

Jim