My spouse has PD and I am wondering if I have it as well. She was dx'd about five years ago and about 2 years ago, I began having these internal tremor feelings which went away after awhile. They were mainly in my upper body and would sometimes wake me up from sleep, seemed like my whole shoulder area was shaking, both sides. It was so weird, but now gone.

Recently I have noticed as I am falling asleep my foot or sometimes a hand will flail out, sometimes it is even my entire shoulder jerking forward or backward! Right or left, there is no pattern, and it doesn't always happen, just sometimes.

Then I noticed awhile back that my right shoulder was hurting. I do a lot of physical work so I figured it was that...until I remember my spouse having a sore shoulder a few years before dx...this freaked me out. Sometimes it really hurts and sometimes it just aches, and sometimes it's not even there.

I have also noticed that I have been holding my shoulders up, hunched up, which I think I do because I am anxious and now it has become a habit. This makes my upper back between my shoulders sore and now the soreness has spread to my neck as well. Could this be PD?

A twitch, intermittent and in different fingers on different hands, is what is really freaking me out, though. I noticed a few months back that my left thumb would occasionally twitch, just once or twice, then stop. Very intermittent....one time the third and fourth fingers on my left hand twitched side to side, which was weird to watch. This was months ago and has not recurred.

Today though, my pinky on my right side began twitching and is still going. It goes when I lay my hand down over the armchair, very erratically. It comes and goes, is not rhythmic at all, but I've never had a twitch last this long and am scared to death. Usually there is a twitch or two and then it's gone, and on my other hand. But this one seems different. I know there are so many tremors and the PD one my wife had as her initial symptom was in her thumb and pretty regular, not erratic and spastic like this one.

I do a ton of research on PD and care for my wife so I know a lot about PD, probably more than I should. We have two very young kids, starting late in life, and since her dx I have been worried and preoccupied, like most, OK, obsessed, about how we will handle this and how they are doing. Every new little symptom she gets, I superimpose on myself and wonder if I have that too. Backaches, is that PD? Hip soreness, is that PD? I wonder if I am being paranoid with worry or there is reason for concern.

I don't have any fatigue like my wife had early on, no foot dragging or anything like that. I know everyone is different, yet I am very worried. What boggles my mind is that we are both in our forties so for me to exhibit symptoms of PD, if this is what these are, so close in time to hers, makes me really wonder.

If anyone has any input please share. I am not willing at this point to go to a neuro because if it is PD, I am not at the point of needing to take any meds and nothing I have read anywhere indicates that any drug can delay or stop progression.. plus I don't want to know definitively that I have PD, if that's what this is (denial is bliss, as they say). If I'm wrong, I'd love to know what there is out there other than yoga, meditation, antioxidants, exercise (we do all of this already for my spouse), that can help.

I am very healthy and neither of us are drinkers or smokers or drug users, we eat very well so it baffles me that two above-average healthy people would be hit within a few years of each other with PD, especially young onset. I have done some research on this and haven't been able to find any other cases like this, there are some where the couple is much older at dx, but not early onset.

Thanks everyone. I have to say this is a most educated and supportive forum, I am glad to be able to ask this question to such a great group of people.

Hi,

I don't know that I can help much as you are pretty on top of things, and I don't want to get into potential symptoms because based on what you shared it is nearly impossible to say it is PD- I don't know of a doctor with any integrity could diagnose you with such.

You are correct in that currently there is nothing that halts the process once it starts. However, we do know of these things that you can do to help ward off the disorder or slow it way down.

-Exercise. vigorously, research right now shows that biking may slow things down for us but at 80-90 rpm. Not sure how this translates to other modes of exercise.

-Get busy with the anti-oxidants. PD is a neuroinflammatory disorder; you want to stop free radicals. Omega 3's, blueberries, etc. See this annotated list in complementary treatments for PD from University of Maryland Medical Center

-Stress reduction...starting yoga tomorrow is a great idea!

You sound like a fantastic support for your wife, so we hope you stay healthy, but please post with any other questions we may help with.

Laura

P.S. I am a late bloomer parent too- had my little guy at age 41 right after PD diagnosis. I am actually starting a little online support group for moms with PD and young children. PM me if your wife is interested.

hi,

i agree with Laura about not diagnosing you. I also understand your reluctance to go to find out. I complained about my symptoms [right arm not swinging, handwriting deteriorating, toe curling], to my primary care doctor but he never suspected pd in someone as young. I waited 3 years to go to a neurologist. He said, 'that's 3 yrs without possible neuroprotection" [at the time it was selegiline that they thought was neuroprotective].

Looking back, I have to wonder which is worse, the not knowing, or finding out. i think I have to say that i should have gone sooner to find out - at first it brought relief. Trouble there is, even doctors have a hard time with dx at early onset. There was no mistaking mine, I have classic pd if there is such a thing.

Your symptoms are somewhat different from what we usually hear about first symptoms in that they are on both sides. That is one reason I tend to think you should go to the doctor. If you have something that is treatable, or should be treated, you might feel better.

Although it's unusual for both in a couple to get pd, it could be an indication of an environmental toxin in your area. I do know of a couple who both got it. Their son was a congressman, Paul......oh I can't remember his last name, but tragically he was killed in a small plane crash. He championed our cause because both of his parents had it.

I can identify with your worry, and have to say that the worrying can make whatever it is worse, but I think you know that. Best wishes for whatever you decide to do and I sincerely hope you do not have anything serious.

paula

Paul Wellstone from the great state of Minnesota. I also have a cousin who was caring for husband in Washington state. After 15 years of caretaker and getting a first hand look at the progression, she was diagnosed with Parkinson's 3 months before her husband died of complications of the disease.

Your story is so close to what happened in my family! My mother had Parkinson's Disease for a long time before she was diagnosed. I remember taking her to a neurologist. After waiting for 1 1/2 hours, mother was really upset that the doctor talked to her about 5 minutes and decided that anyone who had 3 teenagers and taught school all day would shake! He sent her home. It took another 5 years to get a diagnosis.
I mention this because when mom officially diagnosed, my dad started worrying a bit about some of his symptoms. His GP was not particularly concerned.Guess what? He did have Parkinson's.
To add another twist, the year my mother passed away I was told by my GP "Oh everyone thinks they have what their parents died from!" I am an English prof and students were complaining about my tiny handwriting. I was concerned about my need to hang on to the chalk ledge when I wrote on the board. I spent a year trying to convince doctors that I was NOT a hysterical woman.Yes, I too have PD.
My advice to you is to pursue. You may not have Parkinson's, but you know SOMETHING is wrong. Good Luck!

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