Post by moco on Feb 4, 2023 3:49:49 GMT -8
Hi
I am not new to the group but haven't posted for quite some time.
My husband Peter has a cervical SCI at C4-C7. Long story but got very much worse following an op to decompress. He has had an up and down journey over the last 10 years but recently took a proper downturn and his already poor mobility has taken a downturn, he's started drooling, losing his balance, falls, low BP and a few other new symptoms. He has seen a few Consultants who we had to consult privately as NHS waiting lists would have meant at least 18 months before he even saw a specialist let alone got any tests. Current thinking is that it is probably Parkinsons Disease (PD). I was suprised to learn that the incidence of PD in people with an SCI is higher than usual. He has also been told that he has some cerebral small vessel disease and some new stenosis (mild) at C2 & C3. Though they think that neither of these are likely to have caused his new symptoms.
As you can imagine, he's feeling pretty fed up!!
He started on Levadopa 2 weeks ago (no improvements or side effects so far) and they will slowly increase the dose until it either helps or they decide it is not going to help and the PD diagnosis is dismissed. Trouble is that the symptoms of PD overlap with some of the SCI symptoms. All a bit messy at the moment. This is when you realise how much of a guesstimate some diagnoses are 
. He is being described as in need of "complex management".
Just wondering if there is anyone else on the forum with a double whammy of PD and SCI and how have the two affected each other. And also how fast the PD progressed - though I do know that progression is very individual. Any experience or advice would be very welcome.
