My Worst Nightmare, By beloved Brother has ALS

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Rodney

New member
Joined
Jun 26, 2015
Messages
7
Reason
Loved one DX
Country
US
State
Wa
City
Tacoma
Thank You to all that have gave me this outlet to express my sadness, frustration and everything else that comes with having a Relative with ALS. My tears have been endless and constant. Today was tough seeing my Brother.
 
Rodney,
I know that it is very difficult. I live in Seattle; let me know if/how I can help.
--Laurie
 
Thank You. I have no idea where I go from here. Endless calls to Patient Advocate Groups have fallen on deaf ears. Facing the inevitable is what is causing the Pain in my heart. I'm done praying, my faith in God has been diminished. I ask why my Sweet Brother and not me? As morbid as it sounds I wish he came down with Cancer, at least there is some hope in that. As I type this my Tears are running down my face like a Faucet turned on full blast. I told him today that we are in this together, today I felt his pain more then ever. I pride myself in being the strong one in the Family, I was wrong. If I continue to write, I will most likely sound like a bumbling idiot.
 
What groups? What are you trying to have them do?
 
I guess you can say i'm starting out in Phase One. Support Groups who can advise on how you deal with this. We were bounced from Doctor to Doctor, until a Nurse had the courage to mention ALS. That Day (about 3 months ago) my Life changed. He progression has been fast, weight loss, losing almost complete mobility and fatique have all taken its toll. Today all kinds of thoughts came to mind. Hospice, nursing care and everything else that accompanies this despicable disease...
 
the love you have for your brother is very real, he is fortunate to have a supportive brother.
Good luck with navigating the health care system.
There are many knowledgeable people here...no question is a silly question.
God bless, Janelle x
 

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Rodney, have you contacted the local ALSA? What you describe is in part their job.
I don't know where your brother is being seen, but there are several clinics in the area. My e-mail is in my profile bio if you want to get more specific or need other local resources for things.

Best,
Laurie
 
have you gotten a second opinion?

get an ALS experienced neuro ... most neuros can't spell ALS :)
 
Is your brother a veteran? It makes a big difference.
 
Hi Rodney,
if you go to the top of the general discussion forum there are posts at the top we call stickies.
They contain a lot of information that will really help you at this point.
 
Rodney, just because you are stricken with grief, does not mean you are not strong. It means you love your brother deeply. Let the tears flow. Your shock and grief are what we all experienced. You will get through this initial stage. I understand your feelings and what you are going through. We all do. Reach out to others for support, and don't turn your back on faith, which can be a source of comfort and strength, although your initial reaction is understandable. The ALS community in your area and this forum provide a wealth of information, resources and encouragement. There is life after diagnosis. You will have memorable times with your brother, so try to take one day at a time and not think too much of the end stage. There is time to deal with one problem at a time, just one step at a time, and you will get through and be a wonderful support to your brother.
-Charlene
 
You Folks are very kind and understanding. I'm so fortunate to have found you all. I will take all of your advice to heart. I was saying to a friend there is no text book in dealing this, I was wrong. Each one of you add a chapter in this Book we call ALS.
 
Rodney that is a perfect description.
Those of us (me!) who can't help with practical matters, offer support through prayer and encouragement, which I know is very helpful for me and my situation. Kind of the handwritten notes on the pages of this wonderful book. I'm so very glad you found us.
God bless, Janelle x
 
Rodney, just because you are stricken with grief, does not mean you are not strong. It means you love your brother deeply. Let the tears flow. Your shock and grief are what we all experienced. You will get through this initial stage. I understand your feelings and what you are going through. We all do. Reach out to others for support, and don't turn your back on faith, which can be a source of comfort and strength, although your initial reaction is understandable. The ALS community in your area and this forum provide a wealth of information, resources and encouragement. There is life after diagnosis. You will have memorable times with your brother, so try to take one day at a time and not think too much of the end stage. There is time to deal with one problem at a time, just one step at a time, and you will get through and be a wonderful support to your brother.
-Charlene

Ditto!

Sherry
 
Rodney, just because you are stricken with grief, does not mean you are not strong. It means you love your brother deeply. Let the tears flow. Your shock and grief are what we all experienced. You will get through this initial stage. I understand your feelings and what you are going through. We all do. Reach out to others for support, and don't turn your back on faith, which can be a source of comfort and strength, although your initial reaction is understandable. The ALS community in your area and this forum provide a wealth of information, resources and encouragement. There is life after diagnosis. You will have memorable times with your brother, so try to take one day at a time and not think too much of the end stage. There is time to deal with one problem at a time, just one step at a time, and you will get through and be a wonderful support to your brother.
-Charlene

Today was a Good Day. We never discussed his health, and we laughed. One step at a time... Thanks Charlene
 
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