Informing Others

Status
Not open for further replies.

robod93

New member
Joined
Dec 15, 2013
Messages
1
Reason
Learn about ALS
Country
Ire
State
Galway
City
Galway
I am newly diagnosed with mnd and i am 20. When is the best time to tell others. Also who should I tell. I plan on committing suicide when it gets too bad, so should i tell friends so they dont feel guilty?
 
I know you must be feeling aweful right now. But you are not alone. The last thing you need now is negativity. Once you do share with others be prepared for many well intended "helpful" opinions and suggestions, pity and people throwing all their fears and emotions on you. as if your strong enough to handle it. If you arent prepared to sift through all those annoying messages I suggest you talk to a select few family and friends you trust will encourage you and give you positive uplifting feedback. Please tell me you are not seriously considering suicide? I know it sounds horrible what the doctor says is going to hapen but life is still worth living and you have a purpose you are alive. I will be praying you find that. I hope the people on this site can be some support and encouragement to you.
 
Rob,

I hate ALS - particularly when it hits young people. Please believe, there is life after diagnosis. Big life! It's more intense, more colourful and much faster. You will learn things about yourself and others, that will astound you. You are stronger and braver than you think. There are silver linings, despite all you may think you know about this disease. We take nothing for granted, we love more deeply, we forgive easily and we seek forgiveness. We live more forcefully.

So, about telling others... I imagine you've told your immediate family? In my case, I sent an email to friends about an upcoming ALS Walk in which I was participating - in view of my own diagnosis. It served two purposes - friends found out and generously donated to the cause. You will learn that most people are genuinely sympathetic and eager to help you. Most often, we discover some people on the periphery of our life, become front & centre in our life, offering the greatest selfless love and support.

Speaking of support. It's there for you when you want it. In addition to the MND clinic in your area there is a " Galway Irish MND group" on Facebook. And we are here for you!

Pplease remember that each PALS journey is unique - many have very slow progression and live a full life. Do not despair. Don't think too far ahead. One day at the time... be present in each day. Be gentle with yourself.
 
Rob,
It sounds like you have not yet come to terms with your diagnosis as yet -- why should you? It will take however long it takes. So I wouldn't worry about telling which others until you've decided what you are telling yourself. It will be harder for others to connect with you about what they read or hear from you if you are in the turmoil you are in now. And unless/until you have some kind of event that you want friends to attend, they will feel more guilty if you tell them about contemplating suicide.

Still, though it's early days for a decision as to if/when/how you are going to control your own death day, many of us fully support your right to make those choices.

Indeed, some have chosen the path of very selectively telling friends, for many different reasons, some outlined above. Still, I can't imagine any of our friends who aren't in the know feeling guilty if my husband ultimately chooses suicide (which, actually, they wouldn't know unless I told them anyway and I would imagine such things are often under the rose in Ireland as well). So you've a red herring there but perhaps you wanted to throw it out as part of the acceptance process. It is your life, your death, and friends can be part of it but that is your decision as well. Be as social or as isolated as seems best. It may be a time to hold your most cherished friends more closely, and gradually to narrow your circle to those whom you see truly care.

As an Irishman, you have read:

I balanced all, brought all to mind,
The years to come seemed waste of breath,
A waste of breath the years behind
In balance with this life, this death.
--W.B. Yeats

The one almost universal truth of MND is that you, unlike your friends, know the manner of your death, whether you decide to push it along or not. That knowledge can make you more powerful within yourself as time goes by. Wait for it.
 
Rob I relate to your feelings as a result of your diagnosis. And especially as someone so young. I felt exactly the same way. In the beginning I would wake up every morning and cry, thinking of ways I could end it all. Then the people closest to me, convinced me to get antidepressants. It was the best thing I did. My depression not only affected me, but it affected my caregiver, my family and friends.

And I agree with everything all the others have expressed.

Janet
 
MND will take your body, but your mind and soul are free to grow. Try to focus on the here and now. Believe it or not I have lived an amazing life since diagnosed. Just different than we originally thought.
Stay strong, this group will help you as it does me.
Casey
 
I had the same thoughts but, after considering the consequences of that action I came to the conclusion that it would set a verybad example to the rest of my family. How one handles ALS can be a very powerful demonstration of how to deal with a very adverse situation.
 
The replies of the PALS here are so inspirational to me.

Rob allow the people here to support you, it won't be easy, but the strengths that I've seen in my time here constantly warm my heart.
 
Rob--you don't have to tell anyone anything until you are ready-there is no rule or time period. and, you don't have to tell everyone everything either. Period.

a plan IMHO
Close family and friends--tell first and soon.
general email to everyone else when you are ready.
Suicide? don't tell anyone until you are sure you are ready to do it, and then only if they need to know.

I had a close family member commit suicide many years ago, after telling me they wanted to die. I was too immature and young to know what to do with that info. it is VERY painful to the ones you leave behind and there will be regret and sadness and disappointment from your survivors for ever. my perspective is that I understand, you have the right to die, and I don't judge you for wanting to do it--especially when faced with ALS. There just isn't a good answer--no one wants to see you suffer from ALS, and no one wants to see you commit suicide. I say, you know In the back of your mind it is an option, but you don't have to do it, and you dont' have to tell your family now in the early days that is what you want down the road. give your life a chance and let everything sink in first.
 
Dear Rob,
I was so saddened to reach your post and you mentioning suicide. But, I also totally understand where you are coming from. My situation though is totally different then yours. I am going through a divorce and it is hurting me to the core. I know millions get divorced everyday right. But, that doesn't help me. I so want to just give up at times. But, I keep thinking about how many people I'd hurt and what if I just hold on a little bit longer and things would get better. Maybe, I was put on this earth to help somebody else who needs me in their life.
What if you turn out to be one with slow progression and still can live a good quality life? What if there is a miracle and a cure is found. Just focus on the day ahead. We will be here to listen to you. Don't be afraid to have a good cry too. Then above all ask God to help you even if you and him have some heated exchanges. God, can take it and won't hang up on you. Sending you a hug, Kim
 
Rob........I have thought of an escape route too..i think the majority here have thought that also...this is bloody scary road to travel but the shock of diagnosis does wear off and there is life after diagnosis...are you in touch with the m.n.d.a...in sure they're in Ireland too and they are a great help...as are the folks on here
you're not alone...
Take care Pete
 
I also wonder about the end game and its natural to do so. My threshold is when it is agony for my family to have me alive rather than mourn my passing. I hope I'm aware enough to figure out when that day comes...actually when I reach that point when it goes past hopeful to hopeless then I think it is a reasonable alternative.
 
I am newly diagnosed with mnd and i am 20. When is the best time to tell others. Also who should I tell. I plan on committing suicide when it gets too bad, so should i tell friends so they dont feel guilty?

ditto the comments & remarks here. I am approaching my 4th month since my diagnosis and my thinking on the whole thing has changed weekly (daily/hourly at times).

Exit strategies are tricky and also change quickly. Be patient. And there a lot of advances happening all around the world, so who knows.

This disease has already introduced me to a whole new perspective on life. This forum itself is a new universe of people living and sharing their lives in real time.

FWIW, I chose to tell most everyone around me as my speech makes it obvious that something is not right. No problems.

The biggest problem I have to deal with is between my ears :).

Max
 
Status
Not open for further replies.
Back
Top