Hi, I have recently been diagnosed with Parkinsons after 20 months since my initial Neurologist appointment. I was originally told it was unlikely that I had Parkinsons despite having a tremor in my right hand (much worse when stressed), reduced arm swing, loss of sense of smell, writing that got smaller as a sentence progressed, stiff neck/shoulders and nerve pain throughout my body etc. I was given an MRI (nothing suspicious found) and after further delays and tremor becoming more pronounced I managed to get a DaT Scan, which was abnormal, and that eventually led to Parkinsons being diagnosed. I was prescribed Co-Careldopa 12.5/50, only had 5 days of taking them but no change to my symptoms yet, early days but growing slightly concerned about that as days progress. I am 60 years old, do plenty of walking (think my balance is a tiny bit off), decent diet etc though high blood pressure controlled by Beta blockers for over 15 years. In my early 20’s I had a severe case of Guillain-Barre (ICU for 6 weeks) and my Dad had Parkinsons but apparently both of those issues are just coincidence. I have been reading the forum as a guest for a while and really appreciate all of the input and helpful advice available and thought it was about time I introduced myself as I know I will have many questions in the near future. Regards, Martin
Hi Martin,
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Good morning Martin … There are a lot of similarities between us. I am 70 years old.
My Gp said he thought I had Parkinson’s about 5 years ago, I did not think I had. An appointment with a Neurologist got lost & I finally saw one in June 2023. I had an Mri scan which was clear [the Mri scan is to rule out other medical issues not confirm Parkinson’s] & a Datscan like yours was abnormal & I was diagnosed with Atypical Parkinson’s. My symptoms can be extreme shaking in stressful situations like carrying a coffee or tray of food to my seat in a cafe. Also if I stop walking & stand still for more than a minute or two I get gait freezing where I cannot move. I sort of freeze. I take 2 pills of Sinemet 3 times a day. I play indoor bowls & before I started taking Sinemet I could not play two days in a row. Since taking Sinemet I can play every day. I have to sit down between each bowl I bowl. So for me I find Sinemet has made a difference but it is only subtle. But for me this is a big deal.
Before I started Sinemet I tried two other Parkinson’s drugs that did not work,
I started on 1 pill of Sinemet a day for a week. Then 1 pill twice a day for a week. Then 1 pill 3 times a day for a week. Then 2 pills 3 times a day forever which is where I am now. I assume you are on just 1 pill a day to slowly get used to it? You will probably not notice a benefit till you are on the full / correct dose for you.
You talk about nerve pain. I have this. I have been diagnosed with neuropathy.
55% of people with Parkinson’s have neuropathy. I take Amitriptyline for this & have found it helps a lot. I suggest you ask your medical team about this.
I also have high blood pressure & A Fib issues & am on Beta Blockers.
Any questions please ask.
Best wishes
Steve2