Brother with AMN

[bioting]

This is something that I can bearly write and that I haven't spoken to anyone (and I mean anyone at all ever) about because it just is such a sensitive issue for me. My brother was diagnosed two years ago and just recently his condition has gotten worst. Hes 28 and can bearly see and walk. Its so difficult for me to even think about and it is something that will cross my mind at least once an hour. He used to be so active and had a great life with a wife and a daughter and now he sits in our living room day in and day out and it hurts. I don't know what else to say but how does everyone deal with this? what to do when you're angry in life and don't think you will ever be happy again knowing this is happening to someone you love?

[COwithAMN Administrator AMN EASIER Volunteer]

You are extremely brave to post here and reveal your innermost anxieties about the situation you face.

This forum has many, many people from all walks of life who understand and can empathise with your situation.

You must try and be strong and support your brother. But we all know it will not be easy for his immediate family and friends who love him. You don't say if he is having any treatment, such as bone marrow or gene therapy. These could offer some help in preventing further deterioration although there are many risks involved.

What will also be troubling you is whether you might suffer in future from what your brother is going through. You don't mention whether you have been tested for AMN. If you have, and you have the indicators of the disease, remember it can strike people in different ways and with very different levels of severity.

This is a horrible disease in its worse manifestations and difficult for us lucky ones who are affected less badly. But it will be conquered eventually. Meantime we must support each other.

Chris

[bioting in reply to COwithAMN]

Thank you, it is so difficult that I cannot even begin to talk to my family about it without immediately crying and that lasts for hours so I try not talking about it but it also bottles up in you and hurts twice over. He's the oldest of 5 children and we are all fairly young from 13 to 28. We are all currently seeing doctors for this. Thank you for your concern and my brother has been seeing a doctor at Stanford Medical but from what I understand there isn't much that can be done regarding bone marrow transplant bc it is too advanced. I still constantly look for new information and hope there will be something soon to at least slow down the process. It is difficult for me and I now suffer from anxiety and depression because of it but finding this forum helps to see other people who are also going through it. I wish I could show him this but again, I cannot begin to speak about it. Maybe I will email him a link.

Thank you.

[BGroel in reply to bioting]

Certainly here to support you and to give you any advice I can. Please update us on what you hear from the dr on whether this is AlD/AMN etc. Stay strong.

[tashhjw]

It's extremely tough and painful to see someone you love deteriorate. It's unfathomable to people who haven't experienced it. You're not alone though. My brother had ALD when he was 6, he deteriorated rapidly and passed away within 18 months. It was painful to watch and not many people will understand what it's like. But you do need to talk about it, if it's not to your family at least so us on here, it's way too much to deal with on your own and I believe that once you're connected to people who understand it makes the process easier to handle.

Give him love. Lots of it. From experience I know, I tried to deal with it by myself and I regret wasting so much time worrying instead of just enjoying my time with my brother.

I wish you and your family only the best.

[ashleyt]

Hi Bioting,

I may just be repeating some of the content below, but I wanted to share my experiences as my husband has AMN (and Addison's disease). The absolute toughest thing about this disease is that the people around us comment, sincerely and with love, that Ben's condition is "clearly progressing." There are so many ups and downs when someone has an incurable disease; you finally get used to it (or at least can talk about it freely without being in tears) and someone says something like the above. It re-shatters our world each time and I've had to ask my family to refrain from the comments. I'll reiterate that their comments are out of love and concern- they just don't understand.

As Chris said, you are extremely brave for telling us how you feel. You should always be in touch with this side of yourself and perhaps even reveal some to your brother. I was holding in so much stress with Ben and I finally broke down and explained that I can't do anything for him- I can't make him walk, or make his adrenal gland work, or tell him he'll get better. I felt so worthless. But he reminded me that I DO help him walk; I hold his hand and arm when he needs it. I DO help his adrenal gland work; I remind him to take his steroids. And I DO show him it'll get better; I make our house AMN-proof so he has less of a chance of falling, and I only learn more and improve this. You'll find your own ways of helping and you're going to make a major difference. You said he's on your couch every day- you're giving him a place to be and sometimes that's all someone needs.

You need to be patient with your brother, show him unconditional love, and know that sometimes you just can't understand what he's going through. He's entitled to be angry and upset and so are you. Talking to someone will always help. Make sure he knows that you're there for him both physically and emotionally.

Another thing that's weird for us is that so few doctors know what AMN is. Ben's neurologist had to GOOGLE IT while he was in the room. It was the most unsettling feeling in the world. I researched everything I could and found out more than the doctors. I even suggested that he get tested for Addison's disease- and I was right. Ben trusts me to read everything and find out the "bad stuff" so he doesn't have to face it. We're hopeful and confident for a cure but we're know it won't be tomorrow. His family is getting tested and we're being wicked proactive.

Lastly, do some research about reactions to diseases like this. It's very different when someone is born with something or when someone has a disease that is well-known and has a lot of programmes for helping the patient and family. AMN comes in when someone has fully developed and started their life. It changes so much so quickly and no one knows what it is. Talking to a mental health professional can make you stronger and more able to deal with your brother's problems as they arise and that is just what he may need. Be open with him and show him you're willing to do anything. You'll go through so many ups and downs yourself. I even found myself wishing and hoping Ben had Addison's disease- Addison's can be treated with steroids and relieve pain and, because he has it, he actually feels better than when he was first diagnosed with AMN. I never in my life thought I'd be wishing a disease one someone- but this time it was for the best.

I truly hope that you can cope positively with your brother's disease. Please come back and ask us anything you want; we're all pretty open here. You can always privately message us and ask us the most bizarre questions because we've probably been through it already. AMN is unpredictable for individuals; they know the rough path it takes but it can manifest differently in everyone. Some people are just carriers while others are very symptomatic. Use us as a tool and tell your brother to sign up on here as well.

[jrod]

I can't even imagine what you and your brother are going through . There are no words for the sorrow I am feeling for you and your brother. I will keep you in my prayers. .Thanks for sharing . Be strong.

[noahsgramma58]

Im so sorry for what is happening to your brother. It's a terrible thing to watch happen to someone you love. When it c starting happening to my son it was hard to understand. You want them to be like they were but unfortunately they can't. Just be there for him listen to him when he tells you what he is feeling and I pray he is getting good medical care. You are a great sister to be helping him deal with it. Ask anything you want here and don't be afraid to share your feelings with us who have been through it. God bless your family.

[bioting in reply to noahsgramma58]

thank you!

[bioting]

I will find the time later to reply to all of your comments individually for now thank you everyone this really helps. this is really the first time I felt brave enough to talk about it out loud. as silly as it sounds it feels immensely better when you know there are people out there dealing with it too. for the longest time I couldn't even google AMN out of fear of what I would find. now I feel strong enough to continue our research and to find ways to make this process a whole lot easier for him. I'm so glad I found this forum. it is very difficult seeing someone you love have to pause his life in a sense for this and watch him slowly lose his ability to walk and see and know you can do nothing for him. I am angry and sad and don't think I can ever be happy in life knowing this. I haven't felt genuine peace or happiness in a year and don't think it will come soon. I only hope for a miracle. I am very young and maybe with the passage of time I will understand but for now I can't help but feel this way.

[bioting]

I just want to say that I don't want to be triggering to anyone by my comments. it's just recently this has gotten worst and I can't keep it inside anymore and I apologize for being so negative

[bozzer]

Hi there. I lost my 44 year old brother only a few months ago to AMN. It was very tough for the 9 months or so he was alive. All we could do was make his life as comfortable as possible. We bought him some sensory equipment as his appetite for TV lessened too. I struggled like you but in the end felt satisfied that I did all I could. Really tough though. I truly feel for you.