Does your lower body give you more problems, or your upper body? We are often defined by whether we have one-sided difficulties (bilateral=not pd).

Think not just movement, but other symptoms too......... it would be interesting to have a perspective on this, top or bottom making the most impact on daily life.......

Lindy

I would say lower, primarily due to leg weakness.

My legs are only a little affected. My arms are badly affected. The biggest impact on the quality of my life, however, comes from non-motor symptoms such as constipation.

Initially my left side was unaffected. About 4 years after diagnosis problems started there too, but they lag behind those of the right. I think that it is normal for PD to start on one side, but to become bilateral.

John

Now's a good time, I think, to revisit Lindy's thread.

Reading Nan Cylist's account, in another thread, of running down the road to pick-up her cross country skis even though, as she pointed out, she found typing difficult, resonated with my own experience. I can run, but I find it difficult to type; I can play tennis, but I find it difficult to get dressed. My posture is bad. I also have many non-motor symptoms: constipation, urinary urgency, etc. Interestingly, although all my original symptoms were on my right side, my lefthand tremor is now worse than my right.

In effect, I have upper body Parkinson's - almost 8 years from diagnosis I have almost no symptoms in my legs, but both stiffness and tremor in my arms.

To try to capture what I mean on a scale of 0 (no symptoms) - 10 (symptoms are so bad that you can't do anything with that part of the body), my scores would be:

my best, "on" results
Upper body, left stiffness=1, right stiffness=4; left tremor=1, right tremor=1
Lower body, left stiffness=0, right stiffness=1; left tremor=0, right tremor=0

my worst, "off" results
Upper body, left stiffness=4, right stiffness=7; left tremor=8, right tremor=3
Lower body, left stiffness=0, right stiffness=2; left tremor=0, right tremor=0

I'll be interested to hear the experience of others.

John

I would say my symptoms were primarily on my right side but I presented with a tremor and not 6 months later had a painful dystonic foot that emerged at first during exercise then would crop up from just walking.

The most I have ever noted top or bottom weakness is that in between med dosages, I have noted either upper or lower body weakness. It is like there is competition for levodopa. Either my legs feel detached, so weak I cannot walk, or I struggle to sit up in bed because arms are limpid. This happens maybe once a day. Rarely is there any tremor then.

I only have dystonia upon waking and stil confined mainly to right foot but right leg can go dystonic now too.

I do get motor blocks with both legs feeling beyond weak, and I am cannot walk. This appears independent of med dosage and I think is panic, glucose, or potassium related.

Laura

Symptoms for at least 12 years but diagnosed in 2008 when meds needed.
Age at diagnosis: 40

I think that the role of the vagus nerve in PD needs much greater consideration in light of its relationship to non-motor symptons. It is almost as though it were a bridge between the conscious and sub-conscious minds. It is one of the largest nerves we have and runs from the cranium down into the abdomen, essentially joining the upper and lower bodies. It is deeply involved with our enteric system and can account for constipation and slow gastric problems. It is wrapped up with our emotions as in that tightness in our gut that comes with stress. Also our sexuality as in the Kundalini. Our cardiac system is there too and when we pass out from syncope or orthostatic hypotension the vagus is involved.

When the vagus is "dead", my legs just don't work. This is what I feel when I am coming on. I find that stimulating the vagus can hasten that switch between "on" and "off". There is an implant available but there are also other means ranging from the erotic to the athletic. I will let you work out the details of the former yourself but will share some things from the latter.

Take a time when you are in limbo between on and off. Lie in the floor and elevate your feet on the sofa. Attempt a situp just like back in high school. Don't worry about actually doing one. The important part is to tense as much of the muscle structure in the abdomen as you can. Experiment as to times and so on and see if your transition period is affected.

This is a little-studied area of PD that has a lot of overlap with "non-motor" problems plus a link between critical areas of physical function and emotional storage - the heart ("broken"), the lungs ("took my breath away", the esophagus ("couldn't swallow that one"), the stomach ("fear in the pit of"), the gut ("my gut tells me...") , the lower back , sciatica, the kidneys, sexuality, all are linked by the vagus.

i'm about equal, but slow leg movement/decreased balance sure has a bigger affect on the quality of my life when off than arm/hand movement.

my biggest problem is fatigue / cognitive decline when off and to a lesser extent when on.

Overall body weakness is my biggest problem. The worst part of it used to be my legs.

Now that I've lost most of my fine motor control, feeding myself is just getting to be too interesting. I've become a fan of food that I can stab with a fork or eat with my fingers.

At one time I was able to build my own computer starting with a bare circuit board, a bag of parts and a soldering iron. The last time I tried using a soldering iron it took me almost 30 minutes to solder a simple connector plug to a power chord. That used to be a 5 minute job.

Constipation, trouble typing, soft voice and side effects from the Levodopa (i.e. dyskinesia and muscle stiffness) all add to my daily enjoyment. Tremor has rarely been an issue.

A recent development is being awakened in the middle of the night with dyskinesia attacks. Oh, what a joy that is!

Actually, I've gotten about as far as I can with drugs. I've been working closely with my neurologist for several years and I've been fortunate to keep most of the worst symptoms of PD at bay. He has often said that he is amazed at how well I've used the tools at hand to make the best of a bad situation. A couple of weeks ago we decided to try one last thing. I now take a Sinemet every 2.5 hours. That's 6 a day. He also added a new skin 24 hour skin patch called Neupro (Rotigotine Transdermal System). I'm working my way up to 6 mg.

Unfortunately, I'm beginning to run out of options.

My wife and I have almost decided that I should go ahead with DBS surgery. My neurologist has been suggesting it for quite a while and he believes that I'm an excellent candidate. That's my own feeling, too. Trust me, I've studied the heck out of it. It's risky.

Steve

sorry to hear about your condition. just curious, what's the worst and best scenarios given to you by your neuro with a DBS? are you getting any benefit from the neupro or do you have to dose up higher before you can expect any improvements? have you tried agonists before with any benefit?

In my case, it is the lower part of the body that troubles me most: weakness and numbness from extended periods of no-use.