Lord God, PLEASE, Not My Brother!

[zots]

My brother was diagnosed with ALS the week before Christmas. By the time he was diagnosed he was losing control of his tongue and he had laryngeal paralysis. Now, just two months later, he is losing control of his breathing muscles. He went into partial respiratory arrest last night! THIS CAN NOT BE HAPPENING! IT'S TOO SOON AND TOO FAST! I don't know how to deal with this. My brother and I have been inseparable our entire lives (he is 43 i am 44). We have always done everything together. People used to think he was my husband because he would go to my child's open houses at school with me because my husband was working. We go on vacations together, we play games at each others homes on the weekends. I CAN'T DO THIS! I CAN'T DEAL WITH LOSING MY BROTHER! NOT THIS FAST! PLEASE LORD HELP ME! I LOVE HIM SO MUCH! HE'S LIKE MY TWIN! PLEASE PLEASE SOMEONE PLEASE HELP ME HANDLE THIS!

I'm so sorry. I sound like such a baby.......but I honestly don't know how I'm going to deal with this. He is so scared and I am so helpless and it's happening so terribly fast. we thought at least a couple of years.......i wanted to take him to England because he's always wanted to go.........but he is going down so fast.......PLEASE! PLEASE! PLEASE LORD, DON'T LET THIS HAPPEN TO HIM! PLEASE I NEED HIM HERE! I just can't imagine my life without him.

 

[DMHltd]

Zots, Your situation is heart wrenching. I'm new here and don't have the experience as a care giver for a PAL that many others here have. But I want you to know that they will be replying soon and I hope they are able to help you cope. So sorry to hear about your brother.

 

[brooksea]

Hi zots!

Very sorry to hear about your brother. Is he on a Bi-pap? There are things to help your brother! Does he go to an ALS clinic? Have you gone with him to the doc? Have you gotten with the ALS Association to see if they can help with communication, etc?

Sorry for all the questions and sorry it seems your brother has Bulbar ALS. We may have some helpful hints for your brother if you could answer some of the questions. It sounds like you are a really loving sister! He is lucky to have you. You need to find out all you can and be his advocate. Fight for him! You can give him courage through your own strength!

You may want to check out Lorie's posts. She also is fighting for her brother...

Also, check out the Lithium study out of Italy. ALS clinics are now setting up protocol to prescribe Lithium. This is our only hope right now! (Check out the ALSTDI forum under research and treatments- you'll find more than you need to know about Lithium and the hope it may provide for PALS)

 

[zots]

thank you both for your responses. i was in a very bad state yesterday. im not too great today but a bit numb so i guess my thinking is a tad clearer.

no he is not on a bi-pap, this was his first episode of dyspnea. they said that there will be several and that at one point he will not regain the muscle use of his lungs. he had to see the ent yesterday who discussed a trach and vent with him.

i have not been to the dr with him, his partner goes with him. he is being seen by the number one als specialist in ohio, dr shields with the cleveland clinic foundation he also saw a dr who is affiliated with the muscular dystrophy association who stated that he should remain with dr shields because if he had als, thats the dr he would want to treat him.

we have contacted the muscular dystrophy association who has said that they will help with communication devices, wheel chairs, bed, etc. for when the time comes. they will also pick up anything that medicaid does not cover as far as treatment, meds, etc. we didn't know about the als foundation and we will definitely contact them.

yesterday was very difficult. there was alot of crying on my brothers part and the family members parts. i guess its all just hitting home now. i dont know what to say to him. i want to make everything better because thats what ive always done. i have always been his protector and i cant protect him now. i cant take this away, i cant make things better and its KILLING me inside. i want to hold him in my arms and tell him that its all going to be ok, but ITS NOT and we both know it. he said yesterday that the thing he hates the most is leaving me. i toldl him i will be ok. but I DONT WANT HIM TO GO! AND I REALLY DONT THINK IM GOING TO BE OK! IM GOING TO BE LOST! anyway, thanks again for listening. God bless you all.

cheryl (zots)

 

[Lorie]

Zot

I am so sorry for you and your brother. My brother Tim has ALS. Like you, we have always been very close and we are around the same age as you and your brother.
I know how you feel. Try to make the best of every moment with him. Try not to let the stress and emotions get in the way. Make what ever time he has left special for the both of you. I know very well how scarry and horrible it is. Feeling the helplessness.
I just make it the best for him that I can. When I am at my Moms caring for him or just spending quality time. I always have a smile on my face. That dosen't mean I don't cry all the way home.

Be there with Love, Support, Kindness and give him what ever he wants. My heart is with you and your brother.

Sincerely,
Lorie (fpals)

 

[rick/Wpg]

Hi Zots,
We are so very sorry for you and your brother! It is so wonderful that the two of you have been so close as many siblings don't even talk to each other. We will remember you in our prayers.
Rick and Joan

 

[Uncle Bob]

It is overwhelming. "Come what, come may, the time and the hour passes through the roughest day."