The story of Elizabeth
In my early 40’s I started having quite a lot of odd symptoms like vertigo, headaches, falling and generally not feeling well. I went to numerous Neurologists and I got quite a variety of diagnosed from possible brain tumour to stress to I was ‘In a bad way , I was bizarre in my symptoms and I should go and see a psychiatrist!’ At this stage my gait was very bad and was unable to walk without. a stick. One day, after spending several years coping with symptoms getting worse I had a stroke falling in front of our car! My husband called an ambulance and they took me to a local hospital where I spent a night only to be discharged. The Specialist who saw me said there was nothing wrong with me ……..I could not walk in a straight line and I could not talk clearly.
We went straight to my own Doctor who sent me for a CT scan which showed I had had a stroke. I was referred to a wonderful Neurologist who after several trips to hospital by ambulance over the next 4 years and more tests than I care to mention I was told I had CADASIL. I had read a bit about it in Dr Google (perhaps not a good thing) and we prepared ourselves for our new life.
I was extremely active person, we travelled a lot having family especially grandcchildren overseas who we used to visit. We travelled Australia, rode bikes and walked miles. All this activity was getting more and more difficult and then I had to hand in my licence.
I have just turned 70 and my husband is my carer and does a wonderful job. Healthwise I am in continent, I can’ t walk without support, I get bouts of vertigo on a regular basis, I gat vile headaches. Luckily my pain in my muscles and nerves is under control with daily strong pain killers.3 months ago I lost my voice and the consensus of opinion is that the muscle that controls my vocals has stopped working. I possibly have had a TIA that has affected my voice. I have a wonderful speech therapist on my case.
At times I do waken in the morning wondering what is going to happen to me today. As time goes on I do have something happen every day. I get a bit tired. I have hobbies of painting, patchwork and scrapbooking which keeps me occupied but often a good sleep is what I usually have!