Hi. I was newly diagnosed last week with PD.
About 2-3 years ago the symptoms started, all on the left side of the body, arm tremor and “wrong” swinging of the arm; then more symptoms the following year: wrist turning inwards and knee bending and poor quality of walking, (the tremor improves as the day progresses but it’s the opposite for the knee bending). Also foot clawing was the most recent one to develop but it only really happens when walking in my local towns, but doesn’t really happen when walking on foreign hols!
I should point out that I have other neurological conditions including sciatica for 13 years and 90% of the problem is with the left leg. I had a failed nerve root decompression in 2017 so now am not getting treatment and just get on with the fairly debilitating pain. This condition rules my life more than the others.
I also have a cervical spine disease whose symptoms started a couple of months before those of the PD. The symptoms started with tingly fingers and a crushing feeling in the wrist. The following year I developed a perception that I was going to fall over and indeed I had a couple of falls that luckily didn’t result in major injury. I had a neck operation 12 months ago that got rid of these symptoms.
I also have other symptoms: arm droop, foot drag, reduction in arm motor skills, arm weakness particularly when I’m lifting the arm up, and to me it’s unclear whether these come from the PD or from my cervical spine problem, and no doubt the consultants had to be careful with my diagnosis: they concentrated on my cervical spine first before looking for a brain problem.
In conclusion I am in my mid 50s and have 2 conditions that are attacking my mobility.
What I can’t do now: put up wallpaper, do 2 finger typing. Changing gear and pushing in the clutch are difficult but doable, but soon I will get an auto car.
What I can do: climb hills and walk over arduous terrain, drive. But most tasks especially needing arm/hand skills are about twice as slow as before.
My neurologist told me, once the final confirmatory diagnosis is done, they will try me with meds.
So my question to this forum is, if I can still live my life independently and partake in my hobbies, is there any point in meds for me? Especially in the context of possible adverse side effects (will the treatment be worse than the disease?). As I understand it the meds don’t cure or slow the disease they just try to improve on the symptoms, and there’s no guarantee here. Has anyone experienced a big improvement in the symptoms on taking the meds?
I have experience here: a consultant put me on duloxetine, an antidepressant, for my sciatica and after just 1 pill and a few hours the side effects were worse than the disease, so I took no more and had a bit of a battle with my GP. (Only 1 patient in 5 on duloxetine has a significant reduction in pain, but only after building up the dose to 4 times what I initially had)