Olivia, 43, a paramedic from Derbyshire, UK, whose mum suffers from Cadasil.
“There are implications for the future for us all”
I first came across Cadasil when my maternal aunt was diagnosed several years ago. My mum was then diagnosed two years ago after a stroke. Mum has always suffered with low mood and depression.
After I was born, she started to suffer with severe and debilitating migraines, with mimicking stroke-like symptoms... photophobia, nausea, vomiting, loss of sight in one eye and hemiplegia. We, as a family, noticed deteriorating short term memory quite a few years prior to the stroke which happened in Feb 2016. It’s been very challenging since.
She has increased depression, elements of her independence have been taken away: she has stopped work and lost the confidence to drive. She has lost enthusiasm for things too, and general motivation. She has a general and overwhelming tiredness and loss of strength. I personally have suffered with migraines from a young age. Over the past several years, the symptoms have worsened and attacks have lasted 3 to 4 days. I have thought, and still think after monitoring, that they are hormone related as they often occur around the time of my period.
We were stunned and frightened when my mum was diagnosed, but maybe not too surprised. The consultant didn’t seem too “informed” re Cadasil and was very morbid. She almost stated that Mum would sustain another, more debilitating, stroke within the next few months. She didn’t and hasn’t so far. Question marks now hang over me and my siblings as to whether we have it. There are implications for the future for us all...parents, selves and children.
Mum dealt with the news very well. She was almost too simplistic, in the vein of “You can’t change it can you?” She started to be more conscious of food choices at first but that’s dwindled. She had an initial “can do attitude”, especially towards rehab. It helped her mindset a lot.
I make sure I exercise regularly and have cut out a lot of sugar. My outlook on life is quite “dark” I think, especially as I haven’t been genetically tested yet. My MRI was clear. My job doesn’t help really as I see the after effects of strokes, depression, dementia etc. But I try to be positive. My sister is awaiting her MRI results. She has decided against genetic testing as yet.
Mum is very up and down to the extent where she has had suicidal thoughts. Now we’re not sure if this is enhanced massively by the Cadasil or an extrinsic factor...or both. Either way it is impacting on us all, emotionally and mentally. Mum is and feels very isolated where she lives. Confidence to drive to busy places has deteriorated. Motivation for everyday life dwindled after having to stop work. I attempted to get her involved in charity shop work but she was not over enthused.
I think healthcare professionals have a poor knowledge and ignorance of Cadasil mostly. However, Mums GP is excellent from what I understand. My biggest concern is the differences of opinions concerning the use of thrombolysis [treatment to dissolve dangerous blood clots). A lot of research indicates no, yet some say yes.
I know for a fact that my Aunt HAS been successfully thrombolised at Nottingham City hospital and sustained no residual weakness or lasting impairments/disabilities. They were well aware of her medical history. Why is there not a definitive or generic answer to this question? I would like to think that if there is some hope of treatment to prevent the possible lasting effects of a stroke then medical professionals would be promoting and advertising the fact. Surely?
Family and friends have been the biggest help along the way – I talk about my mum a lot with my siblings - along with positivity and motivation gained through exercising.
