Lower or Upper?
 

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

good topic
 

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

Upper body subtype?
 

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

Really great topic
 

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

`The vagus nerve
 

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.

fatigue is my biggest problem
 

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.

Great topic!
 

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.

I started out on Requip. It kept me terribly nauseated. I also became even more OCD. NOT fun.

After suffering with that for about a year I switched to Stalevo. That was only a bit less bad than Requip. It also added some nasty mood swings to my behavior. LESS fun.

I wasn't exactly batting 100.

Compared to those, Sinemet was my miracle drug. Unfortunately about 2 months ago it suddenly stopped working very well. I recognized it as a neuronal state change. It really felt like it, too. (That's techie talk. Sorry. )

I'm working my way up to the 6 mg dose with the new skin patch. Next week I should know if it's of real help. I'm currently at the 4 mg level. It is offering some benefit but we'll see if it proves out.

With DBS the best I hope for is that my "off" time will approach my "on" time symptoms. Nothing more. At least the surgery is reversible (Yeah, with more surgery.)

At least I'll get to joke about having even more holes in my head.

The worst I expect with the DBS is:

1) infection
2) stroke
3) death

Other than that it should be fine! :rolleyes:

Steve

neuronal change is a good description, not to be presumptuous but i also experience fairly abrupt declines where sinemet doesn't work as well, i guess adding neurotransmitters only helps when there are working neurons in the right places.

haven't researched DBS that much, assumed there was a chance where it would make quite a difference.

Hi Folks
 

For me, with two Parkin mutations, I find rigidity is my worse symptom. My meds wear off almost instantly. My first symptom is brain fog followed by Brandykenisia over my whole body, then a tightning of my diaphram to the point of forcing myself to breath. I am having alot of cognitive difficulties. Memory, multitasking, walking into a room to look for something, not finding it, then get distracted by a messy drawer and making that my project. In the meantime, if I was cooking the meal is destroyed.


Dianna

Who's ON first?
 

For those who experience any feelings of weakness, does shifting your weight help? When I feel my upper body is more connected when lying down on my back if I shift my wright to my elbows a few tumes, my arms and hands kick on. Walking is still a crap shoot. This does not happen daily, but when it does...I curse everything in sight

Laura

The weakness I describe is a feeling of extreme exhaustion in my legs. It is the exact same feeling I use to get after I had jogged 2 miles.

My arms don't feel weak unless I try to do something that requires that I use fine motor skills with my hands. I can lift a weight but I can't hold a spoon hardly at all. I can use a fork to stab at stuff.

By the way, my wife and I just watched the DBS advertising DVD together. That was like watching a recruiting film for a military suicide mission. They didn't soften the inherent risks at all.

When I asked her if I might benefit from it she agreed that I might. Then when I asked her how she felt about it she said it scares her.

I'm lucky in that I've always been able to remain detached from my feelings until everything is over and done. I really feel ambivalent about it. As usual, I'll be astonishingly brave about it then cry like a little girl when it's all over.

I'm almost positive that I'll go ahead with it. Besides, it'll make for a great topic.

:eek:

Steve

Hi Steve,
 

I had mine in 2006. Wasn't scared then and would do it again. The neurosurgeon only had done a few at that time. It is a risk, but it helps YOPD persons better than anything else out there. The biggest drawback is if you wait too long it will not pull you up any more than how you feel now on your meds. Another drawback is you will no longer be able to have MRI scans or DAT scans should you wish to know your progression.

I fought like a Tiger to get it as soon as possible so the effects would be more noticeable and slow down the progression of my disease.

Dianna

Thank you, Dianna. I shared what you said with my family. I think it helped a lot.

Steve

A couple of days ago, and unplanned, I found myself at the end of a 17km walk, having been off my Parkinson's drugs for almost 2 days,

The good news: throughout the hike my walking was excellent, at least as good as the three healthy people in the group.

The bad new: my arm control got progressively worse; by the end I found it almost impossible to make any adjustment to my clothing.

On getting back I took 75mg levodopa (as part of a Stalevo pill). It took about 30 minutes to have an impact, and after a hour I was as good as I ever get.

14 hours later, without taking any other drugs I was still better than I started.

This wasn't a planned experiment, but I collected some tap test scores (left hand 30 seconds + right hand 30 seconds).

Hours since meds, Tap score, Comment
35, 28.90, 6 hours before walk start
46, 22.25, finish walk
1, 57.03, I took 75mg levodopa after finishing
13, 34.68, no more drugs.

This experience raises a number of questions:

How do you explain the upper/lower split within the context of IPD? It is easy to see how a left/right split could occur, but an upper/lower split is harder to explain. Were it not for the profound response to levodopa I would expect some other diagnosis.

Given the short half-life of levodopa this must be almost clear from my system before the start, so what keeps me going? I take ropinirole XL which would still be in my system even at the end of the walk. Also the levodopa is converted to dopamine which is stored in vesicles in the remaining dopaminergic neurons.

What explains the far larger than usual response (area under curve) of the 75mg levodopa at the end?

Does anyone know of any research into these types of questions?

It seems to me that an understanding of the interaction between drug dose, missed doses and exercise would help PwP to optimize their medication.

John

Neck and shoulders give me the worst problems (stiffness and pain) both of which can be stretched out and functional after a good work-out before leaving my bed. Hope to be able to make a video so I can pass on my stretches to you all...which are what keep me going daily. Right foot only gives me trouble when very low on l-dopa. Not being able to find harmony is stressful when playing music when low on l-dopa also (a mental symptom ...when you can no longer connect with the music) a little tincture and I am back playing or singing again. My friends no longer stare or question when I get out my dropper-bottle.