Glenn, 62 , from Bressingham near Diss in Norfolk, UK
“Having Cadasil has drawn my wife and myself closer”
I first found out I had Cadasil after I had a stroke, the scans were not what the neurologist expected, so he called in a consultant neurologist from Addenbrookes in Cambridge, UK.
When I first left hospital I had problems with walking, balance and anxiety, it felt like I was going home to die. When I received the Cadasil diagnosis I was devastated.
Having a stroke changed everything in my life, like I had to relearn everything. I couldn’t drive, and I felt my life was over.
Now, in some ways I feel like Cadasil has enriched my life, which sounds stupid I know.
It has allowed me an opportunity to do something worthwhile by raising awareness about the condition. It has allowed me to see what things are important and what’s not worthwhile and perhaps you see a beauty in life which wasn’t there as you don’t take life for granted.
Having Cadasil has drawn my wife and myself closer, we were always close but we know the time together may be shorter than expected as I’m not going to live to be a hundred. I also found out very quickly who my true friends were, and removed any toxic people from my life.
In terms of relatives with Cadasil, I don’t know of any, as I was adopted and have no children of my own.
At work, I found that Cadasil did have an impact too. I had problems with my manager, although I was the top performing Health Safety and Environmental Manager in the company, he targeted me, so I took early retirement.
On the whole the medical professionals treating me have been fantastic, my local doctors have been supportive and taken the trouble to learn about the condition. Addenbrookes are just fantastic.
The biggest supports to me have been my wife, doctors and neurologists and friends who have been there for me.
My biggest hope for the future is to stay well enough to keep raising awareness and keep a good quality of life. But most of all to be a good husband so she has really good memories when I’m no longer here.
The best advice I was given was by a terminally ill man when I was struggling with my diagnosis “whilst you are busy dying don’t forget to live”, these words changed my life. From this I started to run, raise awareness, got interested in things again, love life, I’m so very lucky.
|2018 CADASIL conference
|2017 CADASIL conference