FAQ

Find answers to some of the more frequently asked questions on the Forums.

Forums guidelines

Our guidelines keep the Forums a safe place for people to share and learn information.

Announcement Icon
You can win one of three $200 gift cards. Complete our survey by 5pm, 30 June 2024 AEST to enter the draw. Your response will be anonymous so you can't be identified.

has anyone lost a loved one to MND

Rebecca6
Community Member
Hi my name is Rebecca I'm 23 years old when I was 14 years old I lost my dad to motor neurone disease. I was devasted my life came crashing down around me before I got a chance to start it. Due to me being young and naive i always thought there would be a light at the end of the tunnel that I will be able to get through this and move on but now I'm 23 and realise that it's not the case. That I will live with this pain for the rest of my life. But I'm finding it harder now. Sadly last year I lost my dad's sister my aunty to the same disease and 2 and a half weeks later my grandmother to cancer. This time i was more prepared and thought I could do this I'll be fine. But the thing is I'm not. I'm finding it hard to balance my grief and life. Like how do I continue to live my life and not let my grief get in the way of it. I have an amazing partner who I love and want to share my life with. But atm I'm trying to go through the testing process to see if I may have or pass on the mnd gene to my children. I just feel like in my short 23 years of my life I have had a lot thrown my way and just need to figure out a way to balance it all and grieve but at the same time live my life to the fullest. I have amazing friends and family but Its hard to talk to someone when they don't understand. It would be great to find people who have gone through the same or a similar experience and be able to talk and relate.
7 Replies 7

blondguy
Champion Alumni
Champion Alumni

Hello Rebecca

Welcome to the forums... you have amazing strength to post after what you are and have been going through

I am lost for words here.....Its important that you have some support on what you have been going through...Your dad and your aunty......and then your grandmother to cancer......

I have had acute anxiety and then depression since I was 23 but I havent been through or even touched on what you have been going through....

You are an intelligent and well articulated person Rebecca. I have a 23 year old daughter that doesnt have the guts you possess...

You are getting tested...after all what has happened....and you are an excellent mum for doing so....

If I may ask you Rebecca, do you have a legend GP or a counselor that you have been seeing?......The only reason I ask is at 23 you have and have had way too much on your plate. Its like you have a broken leg....you may need invisible crutches (counseling)....even though you have no physical damage. You are a very strong person/mum

In the meantime I will have have a word to some friends of mine here on the forums and see if anyone has been through similar as you have.....

The Beyond Blue forums are rock solid secure to ensure your privacy. They are also a Judgement Free Zone....so there are many kind people here that can be here for you Rebecca....even for just a chat.....

I am only a volunteer here Rebecca, but if I can wish you and your wonderful partner my kindest thoughts...x

you are not alone here in your pain (you are more than welcome to post back as many times as you wish)

(Hugs) for you both

Paul

White_Rose
Champion Alumni
Champion Alumni

Dear Rebecca

Hello and welcome to Beyond Blue. Writing in to a forum such as this can be hard for people so thank you for telling us your story and congratulations for reaching out for help.

You have certainly had a heap of troubles so far in your (relative) short life. Both my parents have died and one sister. My dad and sister died from cancer, while mom died because of an incompetent hospital. However, as I am a grandma, and therefore much older than you, I expected members of my family would die before me. It is the natural order of things. But your experience has been out of the ordinary, even though we have both had losses and grieved over them.

This is the point, grief is grief whatever the cause. I understand your concern about being vulnerable to MND or being a potential carrier of the gene. I sincerely hope this will not be the case. This can be determined quite definitively I understand.

Grief is a different matter. When my mom died I think I was so shocked that I could not take it in. After a while the reality hit home and I cried buckets for many months. Mom died on Christmas Day 1999 and every year I miss her, especially as Christmas is such a family occasion. I share this information so that you will know I understand grief, although we will both experience this in different ways.

When we lose someone precious to us it has a tremendous impact on us. We become angry that the person has gone, depressed about the loss and often want to withdraw from people. Grief swings backwards and forwards between these states. One day we can say we have accepted the person's death only to find the next day we are angry again or depressed etc. This the normal process, so if you can identify with this, then you are very normal.

Remember, grieving is a personal process that has no time limit, nor one “right” way to do it. You have been grieving for your dad for a long time. I wonder if you were taught not to show emotion as a child or thought this was the right thing to do. It doesn't really matter, what matters is that you are still grieving. This is where it is good to talk to someone who understands about grief. People grieve every day over their losses and gradually come to terms with it.

Your grief has gone on a long time and has been further aggravated by the other deaths. I suggest some grief counselling would be good. Talk to your GP and ask him/her for help.

I would like to continue talking if this helps. Perhaps you can write in again?

Mary

Hi Mary thank you for sharing your story with me. I am sorry for the loss of your parents and sister.

After reading your reply to mine numerous of times. I have just realised that maybe in my teens I didn't give myself the opportunity to grieve the way I should have. I think I was more focused on numbing the pain and trying my hardest to forget it. I have tried I think around 3 or 4 counselors but I never really stuck to it as I felt they did more harm then good. But maybe at the same time I didn't give them a chance. I have my days and weeks where I'm fine and feel as though I have truly come to terms with there lose. But other times I'm a ball of emotions or mess. Im finding things trigger me off. Like a wedding I had over the weekend. I think right now I'm feeling lost and confused more then ever. I am getting frustrated with myself for it.

I will definitely consider going back and seeing a counselor again.

Hope go hear from you soon

Rebecca x

Hi Paul thank-you for your kind words. I have seen around 3 or 4 counselors but I have never really stuck to it as I felt they did more harm then good then again maybe I never gave them a chance. I will consider going back to see one again as I'd definitely like some help with dealing with my grief.

Thanks again for your kind words.

Rebecca.

Thanks for your reply Rebecca. I'm happy you found something helpful in my post.

It's more than likely you just pushed your pain and sorrow down to allow you to get on with your life. It's a bit like anger or depression, or a myriad of other emotions. They are all too painful to look at or feel so we push them as far down as we can. After a while the feelings become stronger, I'm sure they thrive on neglect. Then one small incident or word can be like setting off a firework. Suddenly there are sparks and explosions everywhere. And here we are, right in the firing line. Boy is it painful.

The trick is to let the top off slowly and drain away the pain inside. This is why you need an experienced counsellor. And this is why I suggest you start with your GP. Your GP can write up a mental health plan which allows you to see a psychologist, initially for six visits, and if necessary for a further four visits. The psych fee has a Medicare item number which allows you claim most of the fee back. As we are so close to the end of the year I suggest you organise this soon so that your ten visits are used by Dec 31st. Then you can have a further ten visits in 2017 if necessary.

Grief is a tricky thing as I said before. One day it's all gone and then rushes in while you are looking the other way and grabs you by the throat. What you can learn is to recognise what is happening or has happened and put in place a way to manage this.

I find I need to look at what has been happening for the past few days to see if something has triggered my sadness. Sometimes it is as simple as being tired. You can learn to recognise the signs and take the appropriate action. Sorrow will never go away entirely but it can be manageable. A friend once told me that the sadness never goes but the periods between remembering grow longer. I found that comforting.

We never want to forget our families so we can learn to remember them in a happy way. I have also found that simply talking about the people who have gone is helpful. People hesitate to mention a loved one's name in case it causes upset. And maybe right now is not the time, but as you grow more resilient you will find remembering the happy times will be a comfort.

Mary

Hi and welcome Rebecca;

I reiterate Paul's sentiments...sometime's there just aren't words; how very, very tragic. I'm truly sorry for your loss..

Apart from offering you my support with listening, I do have something that worked for me when nothing else did.

My Nan died when I was 15 and for nearly 20 yrs I couldn't get over the grief. She was like my own mother so losing her was devastating. I couldn't even say her name without breaking into uncontrollable sobbing. I eventually bought it up with my counsellor at the time, and she gave me some 'homework'.

She told me to write her a letter. But there were rules: Do this alone and turn off your phone.

Do not judge any word or phrase you write or anything that comes to mind. This is extremely important. The exercise is meant to give your inner child a voice.

Try to write without thinking. This helps to tap into the subconscious and stops the left brain from analysing too much.

Accept uncomfortable feelings and emotions as normal. They belong to you after all and are better out than in. Your letter is to unlock unexpressed emotion as well as words.

If you want to swear, then swear! If you want to rip through the page with your pen, then rip away. If you feel like crying, then write; ...tears, tears, tears..I'm crying! Give your heart and hurt a voice..

Do not stop for any reason until you're done. You'll know when that time comes. Let it all out!

Your letter might be to your father; a man you watched perish before your eyes. Tell him what that did to you..then and now.

I won't say how my letter turned out because I don't want to set things up before the event. But I can assure you, the moment that letter ended, I was free! My longstanding grief was explained and expressed. It all made sense and never affected me again.

So, whether you decide to write or not...it's up to you. It may not be a good time right now with grief for others a concern. But when the time's right, I hope this helps.

Kind and sincere thoughts..Dizzy xo ..hugs too.

Hi guys I'd like to thank you all Paul Mary and dizzy for sharing your stories and offering advice. I have taken it all on board and I'm going to take the right steps to help improve my well being and way of life. I never expected to get the responses I have had from you all. And I can't thank you enough for all your kind words.

Thankyou all kindly

Rebecca xxx