Self help thread. I am a widow coping getting on with it

sheilavw

This is my most visited thread on this forum. I always read with interest all your posts, and greatly admire your strength.
On 17/7 my lovely Husband was diagnosed with Motor Neurons disease. I feel very very sad. I am frightened for the future

L-J-R

I don't post very often and have no advice to offer, but I'm sure that all those who visit this thread will be thinking of you and your husband, and offering, posted or not, love and support. Turn to that when you feel low.

Elona_2

sheila

I just read your post and wanted to send positive thoughts and hugs with hope that you have a longer time of being yourselves than you fear.

sheilavw

Thank you for your kind words. I'm not coping. I keep crying (not in front of him), I wake at 3am and cannot get back to sleep. I am thinking of going to the G.P for some tablets to help me through this.I work in school so I am off at he moment. I just feel so sad

lessonlearned

Hello Sheila.

I am so sorry to hear about your husbands diagnosis. However you cut it, it's devasting news for both you.

I am afraid I have walked in your shoes. My husband suffered from a rare neurological condition which took years to diagnose......in fact it was never officially confirmed because ultimately it can only be confirmed after death. But we had a reliable working diagnosis, we knew what we were dealing with and where it was going.....

In the end his consultant and I decided not to subject him to a post mortem for confirmation. What was the point, there was no need for a coroners report. I felt he had been through quite enough and dissecting his brain wouldn't have added to medical research. So we agreed to just let things be.

His Illness was Multiple System Atrophy with a Cerebella Ataxia presentation. MSA-CA. There is also a Motor Neurone version. MSA-MND, and it can also present as Parkinson's. The symptoms of MSA are pretty much the same as MND and the progression is, unfortunately, inevitable.

Even before we became even close to a diagnosis I knew what lay ahead, before we even saw a neurologist I just knew. I watched our GP put my husband through a few simple neurological tests and I just knew. It was a blinding flash of realisation that whatever it was was nasty and that it would be terminal.

I can't help you overcome your fears, they are only too real but I will tell you this.......you will find hidden depths within your own character that you never knew you had. You will get through it and you will find that you have what it takes. Right now you are terrified, but trust me you will cope.

I am afraid you both have a difficult journey ahead of you and words, even from someone who as been on the same journey, aren't really going to help.

So I will just say for now that I agree it is a good idea to see your GP. Maybe you might also find a MND support group of help, if only for practical advice and information.

I can only repeat I am so very sorry to hear this. MND, like most neurological conditions of its type, is extremely difficult, not just for the sufferer but also for their families and loved ones.

Sending you love, strength and courage.

XX

sheilavw

Thanks for your kind words Lessonlearned.You too have had such a tough time. I always read this thread. I will have to find that strength. I work full time and I am also a Carer with my 3 siblings for our youngest Brother who has Downs syndrome. Our mum went into a home with alzheimers April 2012 and passed away October2013 so we care for our Brother. I think I will go to the G.P. I am no good to anyone if I cannot cope. I also have my full time (term time) job. I only hope work are supportive. I have been there a lot of years and have had hardly any absence.
Thank you again

sukysue

I am so sorry Sheila, please ask for help from the GP , you may also want/need to take time off your work to spend valuable time with him. I am sure they will be very understanding and supportive. People will want to help you my dear .

humptydumptybits

sheila, I am so sorry to hear your news, I hope you find work supportive as things are obviously going to be hard for you. I've been my husband's carer for nearly 30 years, it is amazing how we can adapt but it isn't easy.

Torry_Quine

Sheila I'm so sorry that you've had this terrible news. I hope that you get lots of support.

humptydumptybits

Hi Elona, hope your daughter is doing OK. This weather must be awful when you are heavily pregnant and being overdue just isn't fair. Three of mine were late and two had to be induced and that last week was so hard.