A marriage of neurological issues

[Madauntie]

I have only just joined this very supportive group and if you don't object I would like to share my situation with you all.

I married the most wonderful man in the world in 1973. Paul was the kindest, most helpful man I had ever met. We longed to start a family but after 5 miscarriages we realised it was causing issues between us. Our love for each other would be enough to last till our old age. Then in 1982 I gave birth to a beautiful baby boy and we knew our life together was perfect.

In 1989 Paul was diagnosed with Huntingdon's disease a brain degenerative disease which we can all empathise with. I nursed Paul at home for 14 years but finally we decided it was time for him to receive full time nursing care.

From the day he entered the care system I visited every day and once he was bedridden and could not move his arms I made sure to be there from 0730 to feed him his breakfast, till 2000 when he was finally settled for the night.

In March 2017 his suffering was over and I had to leave him to the Lord. One month later I was diagnosed with Parkinson's disease.

My world fell apart but I knew I had to build a life for myself or become a very miserable old lady. I sold my house and moved to a different part of the country. Before the sale of my house was completed I was diagnosed with MSA. Now Huntingdon's, Parkinson's and MSA share many symptoms so I have some idea where my life is headed.

I've always said some people let a diagnosis kill them and others embrace life and live it to the fullest. Paul sadly followed the first path but believe me I love being alive and plan to keep it that way.

I know this is a long story but I hope it gives encouragement to someone out there. I know MSA will win in the end but I won't let be my life.

[Paul_and_Sue_Wood]

Madauntie

How the deck of cards has fallen the wrong way for you, but because you have a massive love and experience of conditions in nursing your husband you also know that attitude and the correct environment are key to longevity.

As i am sure you also know, enjoy every moment you can grab and get out there, but plan for the worst and if it doesn't happen.... a bonus.

MSA affects different people in different ways and at different rates all you can do is accept your position, adapt and carry on.

We wish you well in your journey and as you said the lord is here for us all, giving us love to use and pass out to others around us.

Paul and Sue

[Yanno]

What a sad but also uplifting story you tell. Your dedication to and love for Paul shines through. Jackie and I have always advocated being as positive as possible in the circumstances. The secret, as you have said is to embrace life, and enjoy every moment you can.

Good luck with your fight, keep us all posted on how things are going.

Take care, Ian

[Diane831]

I am sure that your attitude will see you through this journey well. Other people are so happy to join in helping you along the way when you are positive.

Wishing you smiles along the way.

Diane

[Madauntie]

Thank you for all the replies. When diagnosed I could have been a "why me?" person but having seen how long Paul survived with his HD, made me all the more determined to accept the cruel blow graciously.

I am not alone in life there are 3 of us on this journey, myself, MSA and The Lord

God Bless you all on your individual journeys. Remember you are never alone xxx

[Madauntie]

😀