Intro and drug question


I’m a 49 year old male and I have very recently been diagnosed with PD. My diagnosis story starts with a tweet from BBC reporter Rory Cellan-Jones where he reveals he has Parkinson’s Disease:

I saw the tweet and that got me thinking about my right arm which occasionally shakes - I had just been ignoring it. I absent-mindedly looked up PD symptoms on the NHS website and was truly alarmed at how many of the listed symptoms I had. I visited my GP who said I probably didn’t have PD but referred me to a neurologist. Several months wait went by during which time I convinced myself I was just being a hypochondriac and that I didn’t have PD. However, in October 2019 I visited the specialist and he did some tests and diagnosed me with PD. I was quite surprised at the diagnosis but also happy that my strange collection of symptoms at least have an explanation.

My symptoms: My right arm shakes a little when I extend it and when I am running. Fine motor control is sometimes awkward, e.g. using the computer mouse, brushing teeth and washing hair. My handwriting has deteriorated dreadfully. When I straighten my fingers for a time (e.g. when cleaning) I sometimes have trouble un-straightening them again. I do sometimes feel a little dizzy and my balance is sometimes poor when starting to walk. Reaction time and speed of movement has reduced (I play badminton regularly so this was easy to spot). Fatigue has increased - I fall asleep on the sofa more often!

Individually none of these symptoms are particularly devastating or worrying health-wise and indeed I had put them all down to “just one of those things” that happens when you’re nearly 50. But together as a package they represent quite a depressing collection of changes that, frankly, I could do without. And, if I’m being honest, I do worry about the future.

I have my down days when I feel really blue. But I try not to get too down. I work for myself which means I can be flexible with my time. I play badminton twice a week, I sing in 2 choirs, I belong to my local Rotary club, I cycle with groups, I do the occasional Parkrun, I have started yoga and generally try to keep as active as possible. Apart from the yoga I was doing all of those activities pre-diagnosis. I have contacted my local Parkinson’s UK club and I’m going to one of their exercise classes for working age people. I also have 2 wonderful teenage children to keep me occupied. Oh and a house that I moved into that is in desperate need of renovation. So I have plenty to keep me busy.

I have a MRI brain scan and Datscan booked in the next month.

I have been put on 1mg of rasagiline which I believe is a low dose. I want to measure its effectiveness. My question is, what is rasagiline supposed to do? What is it supposed to change? I’m not convinced I have noticed any improvements but as you have heard my symptoms are currently mild anyway.

Thanks for reading this far! :sunglasses:

Hi @Pcyc and welcome to the forum.

I was diagnosed with PD 2.5 years ago and was initially on 1 mg rasagiline. As I understand it, it is a MAO-B inhibitor which means that it inhibits the enzyme which destroys dopamine in the body. It was originally thought to slow down progression but I think this has been contradicted by recent studies. For me it made the physical symptoms less variable but didn’t really reduce them very much It might have reduced my anxiety but this could also be down to vitamin supplements which I started taking at the same time.

I asked to add a levodopa medication when I saw the neurologist in August because I felt my symptoms had become severe enough to impair my enjoyment of some of my hobbies. I also sing in choirs and found that the tremor got much worse when singing which was very unpleasant. I’m now on Sinemet Plus as well as the rasagiline and it controls the symptoms much more effectively but wears off quite quickly, which is exasperating.

All the best


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