Sinking heart

[SIDELLE77]

Aloha,

My brother was given a diagnosis of ALS 3 days ago. He began having symptoms 11/2008. Clumsiness in his left hand; twitching in his left shoulder & arm; atrophy in the left arm and hand.
Within 3 - 4 months, his tongue was being affected. Up until this point, I was unaware (he was afraid to tell us). Upon learning of this I immediately took him to the hospital. And the tests began.
Only 2 months later, he is now having twitching in his right shoulder; and legs, and it is affecting his lips;swallowing & speech. It is becoming increasingly more difficult to understand him. My mom arrived last night, and we are on a mission to get this boy the proper help he needs. He just turned 36 a few days ago.
We live in Hawaii and there lies our first concerns. Proper physicians/help.

Today, I looked at his tongue; it is different now. it looks wierd, like it has atrophy too..there are dents in it on the sides, and it doesn't roll on the top; it moves wierd all over. OMG what the hell? this is un f****** believeable.....and we discovered that it has been subtle changes way b-4 11/08...like the kind of things that are subtle, and you might not think twice about...i saw twitching in his chin today; and he said that there is twitching all over...becoming more increasing (all over)now; when does the time frame from beginning to end start? he doesn't have trouble with breathing (yet) i asked him today. He knows what he is facing...if this doesn't give perspective....dayum.

The tests he has had are;
MRI -with and without contrast.
2 EMG's. & NCV
blood tests
urine tests
CAT SCAN
most were normal...seems apparant;until it is to late?

Just looking for some input, and thoughts; as we are ready to do whatever we need at this time. What steps should be taken next?

I have read a significant amount of information about Bulbar ALS. This seems so apparent with my brother. Please, help. We are so scared. OMG!

He has asked his neurologist upon her call with the diagnosis if there are any other tests that can be run in order to confirm or deny this; and she responded with the answer - 'an autopsy' (wtf) My mother and I will be calling her tomorrow to set up an appointment to 'chat' with her. :0)

Staying strong for my little bro...

 

[Zaphoon]

Just wondering why you've duplicated your thread...

 

[SIDELLE77]

sorry; new discoveries today, and didnt realize it was showing as a duplicate...lost in worry and concern. :0(

 

[KANSASTOM]

I am very sorry, did you say his EMG's were normal?

 

[SIDELLE77]

yes, they did not see anything of great significance or concern. His first one was 3 months ago; and then he just had 2 more a week ago. One without contrast; and one with. His symptoms are progressing faster now.

 

[CB1977]

EMG's dont use contrast...I think you are talking about the MRI. Were his EMG's normal?

 

[SIDELLE77]

Oops, lol I am getting all thes letters confused. duh! EMG and NCV were not normal. Spinal tap scheduled for next week....I talked to his neuro today. Nerve disorder. Sigh

 

[Mahealani]

Aloha:

Sorry to hear about your brother and I know very well about the difficulties with Drs here in hawaii as I live in Hilo.

The tests are very similar to the tests I had but once the EMG came back positive the nuerologist redid the MRIs (with contrast), the spinal tap and some additional blood work "to eliminate" other problems. These tests did not diagnose ALS, just confirmed that it wasn't other problems with similar symptoms.

Everything came back normal and they had no other tests so they issued the diagnosed. Iwent to UCLA in Feb. 09 for a second opinion and after review of all my tests and another neurological exam, they concluded the same diagnosed.

My symptons started in my rt hand in 1/08 by 9/08 my arm and legs were much weaker. I'm using a walker now and have very little use use of my right hand. I am just starting to notice tight muscles in my face and some speech issues when I'm tired.

Mahea

 

[SIDELLE77]

what do we do?

Well, I guess this is now more of a 'what to do' post. How is it that one deals with the emotional roller coaster of your loved one and this illness? My brother is very withdrawn, and none of us know how to handle it. He says that he is the only one going through this, and that we aren't going through anything. He doesn't really want to do much. He lays around a lot, and is pretty uncommunicative. He tells us that he just wants things to be normal, and as much as we try, we ALL know that thry aren't. He just wants to be left alone. It is extremely painful/depressing to see someone that you love dealing with this, especially when you want to help. I mean, we would do anything for him. At this point, we feel like there is nothing that we can do, because everything that we try to do is wrong. The glass underneath our feet is very sharp. It has been a couple of months now since his 'official' diagnosis, although he has known for a much longer period. We don't know what to do. :0(

 

[joelc]

He needs a good swift smack across his head! For him to think he is the only one going through this is completely wrong, it affects everyone.
I think caregivers have it worse than the person who actually has it. He needs to get past his little pity party and get on with his life. You need to tell him that, it is the only way and I know it will be hard, but it needs to happen.
He can still have a great life, but it depends on his attitude.

I am deep sorry you are going through this!

 

[SIDELLE77]

me too, i don't know how to deal with this. I need someone to talk to. He is living with me now, and I can hardly stand seeing him lay around when he can still function on his own. I am truly afraid of the road ahead.

 

[Moonmark]

Sidelle-- I am so sorry that your family is going through this. Your brother is a young man and had his whole life ahead of him. He is rapidly losing his health at a time when he would normally be at the prime of his life. I can understand why he would feel depressed, withdrawn, angry, negative, etc. and why you would, too. does he have children?

Your brother might need antidepressants and counseling to help him cope with this devastating illness. Not everyone is a "pick yourself up by the bootstraps" kind of person. Nor should they be expected to be. Is he receiving any kind of help from a therapist or through medication or anything?

Sandra

 

[laurajh]

He is living with me now, and I can hardly stand seeing him lay around when he can still function on his own. I am truly afraid of the road ahead.

That's understandable, but he really should make an appointment to talk to a mental health professional and get some help dealing with this. He can still function, so now is not the time to be laying around wasting precious time. I can totally understand being depressed, but there's going to come a time when he'll look back and wish he had done the things he enjoyed doing while he could still do them.

 

[MtPockets]

The Bucket List

If possible go rent the movie THE BUCKET LIST and make him watch it.
It is about someone who knows the are dying and they make a list of things they always wanted to do, but never took the time. Here is a trailer for the movie.
http://www.imdb.com/video/imdb/vi3367043353/

It may help him get his mind off of dying and back on living. We who have this terrible disease try to live every day the best we can. To enjoy every moment. There are no second chances.

Worse things could have happened. He could have died instantly of a heart attack, any number of things. He has TIME, time to prepare, time to do so much besides feel sorry for himself and have his pity party.
Take it from one who has been there. It is no fun.

Get up off your butt, and live what days you have left. AND QUIT MAKING EVERYONE AROUND YOU MISERABLE, YOU SELFISH LITTLE TWERP. (Tough Love hurts sometimes)

I have no idea when the end will come, but I look so much for it to be be over and to go and be with my Lord and Saviour Jesus Christ, family, and friends who have gone on before. God is the only one who can punch my time card. Until then I fight for reaching out to others to bring them some little bit of comfort if I can somehow. When I am finally gone, please rejoice and be happy for me, that the suffering is finally over. It is more like a graduation exercise for me.

Just a weird thought, which I am known for from time to time,

EVERYONE HAS TO DIE OF SOMETHING, SOMETIME.

At least we have time to prepare, to get our affairs in order, visit friends and family, and make any unfinished business right before the end. Please, do not pass on with unforgivingness, resentment, or bitterness in your heart toward others. Now is the time for peace and forgiveness. Eternity, is a long time to leave things unresolved.

This reminds me of a song we use to sing in church which I cannot remember the words to but goes something like this,
My peace I leave with you, my peace I give to you. Not as the world giveth , give I unto you. Don't let your heart be trouble, don't let it be afraid, My peace I leave with you.

Just found the scripture but really like the song,

John 14: 27
Peace I leave with you, my peace I give unto you: not as the world giveth, give I unto you. Let not your heart be troubled, neither let it be afraid.

I feel so small in the presence of God.

 

[jrdoran]

Sidelle77 - As someone who currently undiagnosed but am dealing with symptoms that seem to be getting worse I'll have to agree that he should get out and do things while he can. It is very easy to withdrawal into yourself, of which I'm guilty to an extent and I'm not even diagnosed with anything. Dealing with any health issue can be stressful and depressing and thats why I try to spend as much time as I can with family and friends.

I'm curious though as to why anyone who deals with depression due to illness, which I would deem normal given the circumstances, is told to get on some pills. There are ways to deal with depression without medicating.