• bob-hodgson

    Member
    June 27, 2019 at 3:01 pm

    My earliest symptoms were an occasional left thumb tremor. My primary care doctor told me to cut back on the amount of coffee I drink! Love the compassionate health care system. Four years or so later I noticed the tremors were more frequent and had traveled to my right side this was combined with smaller handwriting and “heavy legs”. I decided to see a neurologist who specialized in movement disorders who confirmed my suspicions. His confirmation was I have good and bad news, the good news is what you have won’t kill you and the bad news is you have Parkinson’s. First and last visit to this doctor.

    • ally

      Moderator
      June 27, 2019 at 3:13 pm

      Thanks for sharing your experience, Bob. Those responses from the doctors are interesting to say the least. Are you working with a different neurologist now? Are you still with the same primary care physician?

  • bob-hodgson

    Member
    June 27, 2019 at 6:17 pm

    I have been blessed to have been working with two of the kindest and compassionate neurologists over the past four years. My current neurologist is the one who suggested that I run for exercise. I would give out their names but I’m not sure if that violates any forum rules.

    • Deleted User

      Deleted User
      June 27, 2019 at 6:20 pm

      Hi Bob, where are you located?  I would love to know the names of your neuros.  You can private msg me with that info.

    • ally

      Moderator
      June 28, 2019 at 10:24 am

      I’m happy to hear you’re being well cared for! 🙂

  • mike-p

    Member
    September 5, 2019 at 10:39 pm

    I began to have frustrating symptoms at least 6 years prior to diagnosis when I was 37 years old. When pitching to my son I noticed that I could throw a few buckets and then I would get the yips and would lose all accuracy. I chalked it up to some type of shoulder injury as my shoulder was often stiff.

    Other ongoing right arm issues included quick fatigue in my forearm and hand. If I was assembling something that required the use of a screwdriver for more than a minute or two my forearm would get exhausted. I’m a computer programmer by trade and never had the best ergonomic setup. I suspected I had some carpal tunnel issues that explained the arm fatigue.

    Another symptom I had no idea was related to the others was right foot cramping (dystonia) that only happened during runs. I figured this was some type of plantar fasciitis.

    The final symptom that sent me to the doctor was an occasional very slight cogwheel ratcheting in my right wrist when using an eating utensil. When I casually mentioned the ratcheting to my healthcare professional mother, and she saw it for herself, she encouraged me to go see a doctor as soon as possible.

    I told my doctor I had a bunch of nagging injuries piling up and mentioned my injury symptoms. I rated them as annoying but explained that none of them were debilitating.  I asked my GP if he thought an MRI of my right arm and shoulder was appropriate. My GP referred me to a MDS neurologist just to cover all the bases. It took me 4 months to get an appointment. To a trained neurologist, my bradykinesia, dystonia, and rigidity limited to the right side had a much more likely explanation.

    However, I do consider myself fortunate to have a fast path to a first opinion diagnosis where all visits and tests were covered by insurance.

  • Deleted User

    Deleted User
    September 6, 2019 at 4:23 pm

    mike, my left side is affected much more than my right.  i am thankful for that as i am right side dominant.  also, it was my primary care doctor who sent me to a neurologist when i told her my handwriting had become small and illegible

  • Deleted User

    Deleted User
    September 6, 2019 at 5:24 pm

    Yes, it is no wonder a cure has not been found..

  • Deleted User

    Deleted User
    September 6, 2019 at 5:24 pm

    Yes, it is no wonder a cure has not been found..

  • andrew-l

    Member
    September 7, 2019 at 1:43 pm

    Left arm tremor (went away). Near frozen left shoulder. Went to ortho who wanted to operate on partially torn muscle in that shoulder (fortunately got 2nd opinion, no surgery, had P.T. but in retrospect am pretty sure this was Parkinson’s.). Stiffness in neck and hips. Finally left leg tremor, then diagnosed. Was told same thing by first neurologist..bad news is you have Parkinson’s . Good news is you will probably die with it, not from it. Also told I had a 100% chance of ending up with senile dementia (sorry I asked), even though my cognitive functioning was/is  100% normal. Now am in much better hands, and a bit more optimistic.

  • mike-p

    Member
    September 7, 2019 at 4:46 pm

    Jean-

    My symptoms are limited to my dominant right side. It’s interesting how every person’s symptoms and response to meds is completely unique.

  • Deleted User

    Deleted User
    September 7, 2019 at 4:48 pm

    Andrew, I am glad you got a second opinion and avoided surgery! And I hate that bad news/good news comment.  acceptance, optimism and living in the moment will be our saving grace

  • mick

    Member
    October 26, 2019 at 3:56 pm

    Posture (and resulting back pain) generated a lot of money for the Drs. MRIs, CAT scans, all with no suggestions for treatment. A news story, someone famous with PD caused me to do the research myself and ask the Dr directly. (I had 5-6 very slight other symptoms, forget which) When I mentioned them he said “walk over there and back–Yep you have PD”

  • Deleted User

    Deleted User
    October 27, 2019 at 1:37 pm

    mick, it seems that is the nature of this disease, so many different symptoms that overlap with other maladies and not consistent by individual.  was the doc that finally diagnosed you a movement disorder specialist?

  • yaman-kahveci

    Member
    October 31, 2019 at 3:34 pm

    Hey,

    My first symptoms were shaken hands and running indirectly in the room

    After that i slept at the hospital for about one month, meanwhile i had no shaken hands even more i wasn’t running ?

     

    But i started losing my voice and my movements has been very slow

    I even couldn’t walk in the first month afterwards i attended a physiotherapy sessions so i could walk but still my movements are very slow

    Forgot to mention that I’m only 26 years old

    • Deleted User

      Deleted User
      October 31, 2019 at 3:41 pm

      Yaman

      you you are so young!  I am 65 and most people I know with pd are 50-75.    I believe movement is so important and I hope u can find some activities especially for people with PD like boxing,yoga,tai chi…

    • Deleted User

      Deleted User
      October 31, 2019 at 3:41 pm

      Yaman

      you you are so young!  I am 65 and most people I know with pd are 50-75.    I believe movement is so important and I hope u can find some activities especially for people with PD like boxing,yoga,tai chi…

    • ally

      Moderator
      December 16, 2019 at 6:51 pm

      Yaman, you are so young … I don’t even know what to say. How are you feeling? Do you have a lot of good support around you?

  • susan-lyn

    Member
    December 16, 2019 at 1:31 pm

    Hi – I am just starting the process of diagnosis.  I have an MRI and a EMG scheduled in January.  My symptoms are a weird vibrating feeling in my right foot and my typing has been full of typos that I never used to make.  I’m 60 and this is all super scary.  I still have my sense of smell and no visible tremors. Did anyone else have these symptoms at the beginning?  Thank you all for sharing.  This looks like a supportive place.

  • Deleted User

    Deleted User
    December 16, 2019 at 1:55 pm

    susan, yes, PD is scary, but I find I cant go down the rabbit hole of where i will be symptom wise in 6 months or a year for that matter.  at the beginning, i had no visible tremors, still had my sense of smell, typing was pathetic.  we all have different symptoms. and, we all respond to treatment differently.  eg; i believe i am levodopa resistant as i dont seem to feel a whole lot better when i take it.,,,maybe marginally better than not taking it.

  • joe-escobar

    Member
    December 17, 2019 at 10:19 am

    About a year ago, I noticed that I was getting really stiff in the morning. When I would take walks with my wife, I found it hard to keep up. So I scheduled a physical. All of my tests came through as perfectly normal, I did a treadmill stress test which also came out normal, but for some reason the doctor suggested that I see a neurologist and she said she would explain more after I saw him. but I was feeling really good about the fact that all my tests came out really good. It was after seeing the neurologist that I found out that they suspected that I had Parkinsonism. I have no visible tremors at this point. I do have a little shake in my jaw when I do anything that takes dexterity. My gait has changed and has become a little stiffer. Sometimes I don’t lift my left foot as much as I should when I walk. When I raise and lower my left arm, it sort of feels like it’s ratcheting instead of moving smoothly. I’ve also noticed a twitch below my right eye that has a tempo of its own and comes and goes randomly. I’m trying to exercise more and have been using some free weights at least every other day. Sometimes I find myself lacking motivation to get going in the morning and have to force myself to get moving. Once I get involved in something I’m just fine. Another thing I have found is that I cry at the drop of a hat! And I don’t mean just tearing up, I start full-blown sobbing when I experience something sad like in a movie run the news oh, it’s just crazy. It also happens doing experiences of joy. Fortunately, at this point, I can still function fairly normally and I just work  through these issues right now.

  • yaman-kahveci

    Member
    December 17, 2019 at 1:15 pm

    Yeah I’m having a good support from my family and friends

    Thank you for your caring ??

  • mary-beth-skylis

    Moderator
    January 14, 2020 at 9:27 am

    Joe, have they since formally diagnosed you? I think it took a while for my Dad’s doctors to pull the trigger. But I know that his indication was a slight tremor in his right foot. He deals with the muscle stiffness as well, and now he tries to do a little stretching routine every morning when he gets up. I do know that exercise is known to have great results in symptom reduction, so it’s great that you’re doing that.

  • kim-mortson

    Member
    January 14, 2020 at 1:49 pm

    My earliest symptoms was a nagging ache on the left side of my back under my scapula bone.  Then when I was running, my left foot would stiffen and then turn over so I could not run.  My left arm would not swing when I walked or ran.  Over the following year, I noticed that I was making a lot of mistakes with my left hand while typing on a key board.  I also could not wash my hair with my left hand as I could not rotate it above my head.  My regular workouts were also becoming very hard….I just did not have the energy that I once did and I got tired very quickly.  Finally after seeing my second neurologist, I was diagnosed with PD.  That was 2 years ago when I was 57 yrs.

  • joe-escobar

    Member
    January 14, 2020 at 2:02 pm

    Mary Beth,

    At this time they have only called it Parkinsonism. Most of my muscle stiffness is in my hip area, especially when I get up in the morning. Once I get moving, it settles down where sometimes I don’t even feel it. I still have full dexterity in my hands and arms, but my left arm and hand feels a little weird kind of like it’s a little slow to respond, like when I’m doing something simple like tying my shoes. And the quiver I get in my jaw shows up mostly when I’m doing something involving some kind of dexterity or concentration. Kind of reminds me of when some people stick their tongue out when they concentrate on doing something. Sometimes I wonder if the quiver in my jaw comes from nerve damage from a lot of dental work over the years, and I wonder if that could be what’s affecting my horn playing and causing an occasional stammer in my speech. I have a follow-up appointment with a neurologist in a couple of weeks so I will be curious to see what he thinks at this point.

  • m-emmerling

    Member
    January 14, 2020 at 2:06 pm

    I’m new to this group and to PD. I have many “early” symptoms, but my earliest is frozen shoulder. It showed up out of no where about 9 mths ago. I’m very active and like to run and bike, but I have been unable to swim or do yoga. I’ve been going to PT for 3 mths now and my shoulder has improved to the point where I can swim again (with some pain). Other symptoms include night sweats, minor hand tremors, vivid dreams, sore and sometimes tingling feet, word loss, jaw clenching, and fatigue.

    I’m going to do my best to maintain a healthy life style but I’m worried that PD may prevent me from doing many things I enjoy.

    I’m unsure of what’s too much? Do I need to change my expectations? Or should I continue to do everything my body allows me to do?

  • andrew-l

    Member
    January 14, 2020 at 3:45 pm

    Have it a couple of years.PD is Dopamine deficiency. While everybody has different manifestations, there is probably a decent chance that once you begin to adequately  replace your dopamine u will be able to do things again that you did before though for how long and how well is uncertain As everyone is different.There are no generalized answers to your questions and you need to work with a good neurologist and get on the right meds as needed and then Discuss these things with your doctor

  • mary-beth-skylis

    Moderator
    January 15, 2020 at 8:47 am

    Kim,

    I find this very interesting. I know for my Dad, it was a tremor in his right foot. But your experience makes me wonder if maybe he had other symptoms as well.

     

  • mary-beth-skylis

    Moderator
    January 15, 2020 at 8:49 am

    Joe,

    Well it sounds like you’re taking all the right steps to figure out what’s going on. So, that’s a great start.

  • mary-beth-skylis

    Moderator
    January 15, 2020 at 8:54 am

    Hey M Emmerling,

    Welcome to the forum! I think that only a professional can give you concrete guidelines about what you should and should not do. But I’m also of the belief that we should listen to our bodies, no matter the condition of it. In other words – take it as it comes. Have you adjusted routines or expectations yet?

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