It’s been a while since I posted on this forum. For several reasons (some quite bizarre, such as a prescription being posted to someone with a similar name as me), 2020 was a nightmare due to constant under-medication and difficulty in obtaining a drugs review.
This year has been a little better, but it has become clear that my deterioration is rapid. When I was diagnosed, the neurologist predicted 10 years in which I’d lead a normal life, and then 10 with some difficulty before things got really bad. Nearly 4 years later it is clear that this was a ridiculously optimistic forecast.
I am currently on 5xStalevo 100/25, and Pipexus 2.1, plus 2x Madopar CR 100/25. The last time I spoke to my neurologist was in January when he said he didn’t want me to be on any. more drugs. He referred me for dbs, but 6 months later the referral hasn’t been dealt with.
The neurologist I see is outside my NHS area, which has the unfortunate effect that I don’t have the advice of a Parkinson’s nurse.
The medication barely controls my symptoms. I have chronic insomnia and am grateful if I get 4 or 5 hours sleep a night and I am usually awake by 5 .am… I take my first Stalevo of the day at 7pm together with the Pipexus, and then I take another at 10 a.m. But I don’t feel any benefit from the drugs until 10.45 at the earliest. This means I am feeling dreadful for nearly six hours between waking up at 5 and feeling the effect of the drugs by 11. I’ve had to give up all activities that take place before 11, including a Parkinson’s Dance session and a neuro physio session,
The symptoms I have during that time are stiffness, often painful, shuffling, shallow breathing – I feel that I’m not getting enough oxygen, and an inability to breathe through my nose. 40 minutes after taking the Stalevo at 7 I get an attack of restless legs which lasts around 20 mins, and I get another attack at 10.40. From 11 am I’m not too bad, and I’m able to exercise
The drugs only help with some of the symptoms. I have developed a squint and see double, for which there is no cure. I have chronic constipation which has made my piles and prolapsed womb worse. My body is constantly moving - I’m developing the characteristic waving movements of my upper body as well as the restless legs. I also have low blood pressure and my balance has also deteriorated which means it is only a matter of time before another nasty fall.
In the last year my husband has had to take over all the cooking because my involuntary movements mean I am unsafe in the kitchen, He also helps me get to bed and he does most of the cleaning and housework.
A few months ago I thought maybe I could apply for attendance allowance, but I rang advice lines and nobody responded, so that has gone on hold.
I’m not at all hopeful about getting dbs. If I don’t get it, TBH, I’ve had enough. I don’t see any other option other than Dignitas.