• What was your first symptom?

    Posted by Ally on August 12, 2019 at 9:57 pm

    Do you remember what your first Parkinson’s symptom was? Did you immediately recognize it as a PD symptom? Was it the symptom that led to your diagnosis or did others follow before you got your diagnosis?

    Deleted User replied 1 year, 2 months ago 18 Members · 47 Replies
  • 47 Replies
  • Amelie

    Member
    August 13, 2019 at 1:03 pm

    Hi Ally,

    The first symptom of my husband was loss of smell.  For years he has lived with his loss of smell. We remember having spoken about it to different doctors, but nobody reacted to this.  Then beginning 2018 he lost 10 kgs within 1 month, and we started to be worried. He went through lots of medical tests, all seemed OK.  He started having tremors in his 3rd & 4th fingers of his right hand. We also noticed that he was doing things more slowly, and he noticed his handwriting was getting smaller.  We went to see a neurologist in October 2018.  And in November 2018 he confirmed that my husband has an early PD.

    • Ally

      Moderator
      August 14, 2019 at 3:10 pm

      Thank you for sharing, Amelie. The sudden weight loss must’ve been very troubling. Did you suspect PD from the beginning or was the diagnosis a surprise in the end?

    • richard larbalestier

      Member
      October 15, 2019 at 11:46 am

      My first symptom was not being able to turn a potatoe in one hand whilst peeling it,like you do,and gradually losing some balance. I then looked up the symptoms on the internet which didn’t leave much doubt a to the problems. That was in 2013

      • Deleted User

        Deleted User
        October 15, 2019 at 11:58 am

        Richard, that is interesting.  Along with my handwriting, an early symptom for me was my inability to roll a poster.  Go figure… it is the relentless loss of the ability to do the simplest of tasks that we always took for granted that crushes me sometimes.   Are yo taking any meds?  Have your symptoms improved since you were diagnosed?

      • Deleted User

        Deleted User
        October 15, 2019 at 11:58 am

        Richard, that is interesting.  Along with my handwriting, an early symptom for me was my inability to roll a poster.  Go figure… it is the relentless loss of the ability to do the simplest of tasks that we always took for granted that crushes me sometimes.   Are yo taking any meds?  Have your symptoms improved since you were diagnosed?

  • Deleted User

    Deleted User
    August 13, 2019 at 6:02 pm

    amelie, thanks for sharing, for me, it was smaller and smaller handwriting.  now, the symptoms that bother me the most are extreme fatigue and bradykinesia.

  • Amelie

    Member
    August 13, 2019 at 10:50 pm

    Now he is also having this extreme fatigue at times.   Thank you Jean for sharing.

     

     

     

    • Deleted User

      Deleted User
      August 14, 2019 at 5:57 am

      The fatigue is brutal 🙁

    • Deleted User

      Deleted User
      August 14, 2019 at 5:57 am

      The fatigue is brutal 🙁

  • Amelie

    Member
    August 14, 2019 at 11:44 pm

    Hi Ally,  no we did not suspect PD at the beginning.  The diagnosis came as a real surprise and a great shock to both of us.  We still can’t believe it.

  • Amelie

    Member
    August 14, 2019 at 11:47 pm

    Hi Jean,  Yes the fatigue is brutal. And sometimes now all of a sudden he just falls asleep in front of the TV (after watching for 5 minutes).  Or else in the morning when waking up he feels a great fatigue and does not want to go to work, or should I say cannot go to work.  Sometimes he makes an effort and after some minutes he will get ready to go to work. And sometimes he really cannot make it.

    • Ally

      Moderator
      August 15, 2019 at 1:14 pm

      This must be very difficult for both of you. It’s so hard to plan or commit to anything when you don’t know what your energy levels will be like… Is your husband considering going on long-term disability leave or is he able to retire a bit early? I hope that he has a supportive employer.

  • Amelie

    Member
    August 15, 2019 at 10:50 pm

    Hi Ally,  Yes we are talking about an early retirement.  He wants to wait and see how it goes.  He had planned to retire by August next year when he will turn 60.  Now nobody knows.  And the neurologist said the best medicine in his case is work.  Which I can understand.  What will he do staying at home all day?  So I am constantly on  alert to see what is best . His employer has been supportive so far.  But how long??  We also spoke about working 3 or 4 days a week, but he does not want to speak to his employer yet for this possibility.  And how true, we cannot make plans anymore.  It really depends on his energy level.  Not easy everyday…

  • Deleted User

    Deleted User
    August 16, 2019 at 7:41 am

    I feel for you and your husband…I retired in 2010 after 37 years in the IT industry (I was diagnosed in 2015). I would lay awake at night prior to retirement wondering what I would do with myself every day after retirement.  Well, I am happy I retired as the job stress was getting to me and the days flew by.  Now that I have PD, I am glad I dont have to work and I can focus my day on battling this disease.Exercise and movement and naps  are the focus of my days now.  I wish you and your husband all the best.  For some people, work is their solace. Your husband will know what is best for him.

  • Carmen

    Member
    August 16, 2019 at 8:50 am

    Hello,

    I am Carmen and I am 46. Last week I was diagnosed with PD based on the following syndromes: my handwriting is very poor (not smaller, but hard to be done), I cannot brush my teeth and I cannot play the piano anymore. When I force myself to do these things, the right hand is either stiff or it started to shake.

    Honestly, I am still not believing that they put me this diagnose. I still think that maybe the doctors are wrong. I am 46, I wanted to have a third child …

    I do not face any other symptoms. But they told me that I will.

     

    • Ally

      Moderator
      August 16, 2019 at 3:34 pm

      Hi Carmen, thank you for sharing your story. I can only imagine the emotions you and your family are feeling right now. I’m happy you found this community. Everyone here is lovely, and like Jean said, everyone has their own unique PD story. Hopefully we can help you find some answers and also some comfort!

  • Deleted User

    Deleted User
    August 16, 2019 at 11:55 am

    hi carmen, thanks for sharing your story. It was a hard diagnosis to accept for  me as well.  I got (8) second opinions LOL.   understand that PD manifests itself very differently in people.  some people it takes years to progress and not all people suffer with all the symptoms.  The best I can tell you from my experience is to educate yourself, get a second, third etc. opinion and keep moving (exercise).  Eat healthy, reduce stress, take yoga, meditate…  I find if I focus too much on my future, it can send me down a dark hole.  I try to live in the moment and be thankful for what I have.

  • Deleted User

    Deleted User
    September 25, 2019 at 9:35 am

    Pain in my shoulder started a year before tremor I thought it was from the physical work. I trimmed trees used chainsaws every day. Looking back now realize it was the beginning of Parkinson’s. I’m still in denial no balance issues still have my sense of smell but a lot of fatigue and tremors.

    • Deleted User

      Deleted User
      September 25, 2019 at 6:16 pm

      interesting you say that Marcus, I was experiencing unexplained pain in my shoulder a year or 2 before my diagnosis.

    • Carmen

      Member
      October 16, 2019 at 7:48 am

      Interesting to read about shoulder pains. This is how my visits to the doctors started. It was 2 years ago and I went to a orthopedist and to a rheumatologist. They told me to have patience that it will go away in time, that probably I injured and not realize. Later started having pain also in my elbow and back and neck pain.

      After noticing that I am not able to write anymore and that I cannot brush my teeth I went to see a neurologist and get diagnosed.

      • Deleted User

        Deleted User
        October 16, 2019 at 12:36 pm

        carmen

        thanks for sharing… how bizarre is that.  shoulder pain as a symptom of PD…. go figure.  this disease is all encompassing.

  • Lou Hevly

    Member
    October 10, 2019 at 11:12 am

    Anosmie (lack of sense of smell), 12 years ago. Mild kinetic tremor (tremor when lifting or manipulating something) 6 years ago.

    • Deleted User

      Deleted User
      October 10, 2019 at 12:32 pm

      hi lou, how are you? i just read recently that unexplained shoulder pain could be an early symptom, i did have that about a year prior to my diagnosis.

    • Deleted User

      Deleted User
      October 10, 2019 at 12:32 pm

      hi lou, how are you? i just read recently that unexplained shoulder pain could be an early symptom, i did have that about a year prior to my diagnosis.

      • Lou Hevly

        Member
        October 11, 2019 at 7:58 am

        Hi Jean, I’m doing all right, and I sure hope you can say the same. I had polymyalgia for two years in 2011-2012 and still have a little neck and shoulder stiffness. I thought these were hangovers from the PMR, but maybe they’re another Parkinson contribution to my “well-being”.

      • Deleted User

        Deleted User
        October 11, 2019 at 8:15 am

        good to hear you r doing well lou… as i look back on years proir to diagnosis, i seem to ind more and more issues that could have been related to pd; as an example, my unexplained shoulder pain which has since gone away.  pd is a good scape goat 🙂

  • Andrew L.

    Member
    October 14, 2019 at 3:33 pm

    Also with unexplained shoulder pain. Went to a top ortho surgeon where I lived who wanted to operate. Told him I was worried I might have PD because I had had tremors in same extremity (that had since resolved) and he literally scoffed at me, said “u don’t have that”.  Got second opinion, this ortho didn’t think surgery was indicated based on MRI findings (thankfully). Later started having diffuse pain with any kind of exercise, crazy stiffness, self diagnosed with fibromyalgia (wrong.)  Suffered through bouts of excruciating back and neck pain and stiffness. Took a new tremor in hand plus other diffuse symptoms (masked facial expression, bradykinesia) to finally see a neuro and get diagnosed, prob close to 2 years after initial presentation of shoulder pain. I think shoulder pain is a very common presenting symptom (it certainly is in our little group!), tho I am of the opinion most docs are unaware of this.

    • Deleted User

      Deleted User
      October 15, 2019 at 5:16 am

      Andrew, I never thought my shoulder pain could be related to PD, but the more I read , the more I think that my pain may have been an early symptom of my pd.   I read dr. John Sarno’s book “the divided mind” and “healing back pain”, went to see his protege in NYC (a physiatrist) and eventually pain left and have never had it again.  Very bizarre.

  • Frank Mundo

    Member
    October 15, 2019 at 11:24 am

    My first symptom was “dragging me left foot.”  Specifically the heel seemed to constantly scrape the ground.  That was the only symptom I recall.  My grandfather and uncle both had parkinsons, but it never crossed my mind that I might have it.   Finally my sister urged me to talk to my MD about this.  She referred me to a neurologist who, in ten minutes diagnosed me as “probably having Parkinsons.”  “The proof of the pudding,” she said was that if the symptom was significantly diminshed after taking Carbidopa-Levodopa then it was pretty much assured that I had PD.  I took the drug, symptom was significantly decreased and that was that.  After five years, other symptoms have emerged but the foot dragging remains the most significant symptom I have to deal with.  I am 74.

    • Deleted User

      Deleted User
      October 15, 2019 at 11:33 am

      Hi frank

      thnx for sharing your story.  I have heard from several doctors that the most definitive test to confirm pd is if you take carbidopa/levadopa and ur symptoms go away or lessen.   I am still trying to find that optimal dose for myself

  • Jeffery Hill

    Member
    October 15, 2019 at 12:32 pm

    Like those above my first symptom was loss of smell years ago, but I treated it as a nuisance and did not bring it up with my doctor.  4 years ago at age 56 I felt weakness in my forearms, a slight tremor in my left thumb and deteriorating handwriting.  I secured an appointment with a neurologist within a year and she confirmed PD.  My father also had PD and was diagnosed at a similar age. I knew what was coming.

    Work was not helpful.  My occupation was IT project management, which was fairly stressful and prevented me from exercising at the level I would like to.   I became fatigued, and my muscles in my arms and hips cramped up. My tremor worsened and I often felt overwhelmed.  Fortunately my finances allowed me to retire, so I worked with my employer to find my replacement and trained her by doubling up on my last project. I finished April 30 at age 60.

    Upon retirement I immediately ramped up my exercise to 2 hours a day, 5 days a week.  I blend cycling (spin and outdoor), weight training and aqua fit.  Initially it was a little exhausting, and I napped a lot.  Within 3 months the cramps were gone, and within 4 months I rarely needed a nap, even after a heavy workout.  The tremor is still there, but I don’t notice it as much.

    My neurologist and I have agreed to continue to defer the start of levadopa based on these good results.  I take Rasagiline which is thought to have preventative properties.

    • Deleted User

      Deleted User
      October 15, 2019 at 12:51 pm

      Jeffrey, we have similar stories;  my career was in IT, I was a project manager with stressful projects and my handwriting was my first symptom. Luckily I was able to enjoy  5 years of retirement before my diagnosis.  I was a cyclist and a spin instructor prior to PD but my fatigue is so bad now, I can barely walk a 1/4 mile without totally being wiped out.

    • Ally

      Moderator
      October 15, 2019 at 5:41 pm

      Hi Jeffery, this is fascinating. Your symptoms appear to be exacerbated by stress and fatigue, but exercising very intensely helps alleviate them. Would love to hear more on this. 🙂

  • Gail Dons

    Member
    October 16, 2019 at 5:17 pm

    Hi everyone!

    I had a poor sense of smell for years, as well as sleep apnea  (and I am not overweight or diabetic), but I attributed it to my lousy sinuses. After extensive sinus surgery, I was still stuck with both. A few years later, I had an auto accident and, while I still had a cast on my leg, a small TIA. The MRI showed no problem, but after the cast came off, I couldn’t walk correctly – I dragged my left leg. My son, a physical therapist, said I walked like someone who had had a stroke, so i went back to the neurologist. He didn’t order another MRI; he told me he thought I had Parkinsons! A DAT scan was confirmatory – and that was 6 years ago. I still have never had any shakes, but I do need a small dose of Sinemet now to keep from stumbling and falling – and to keep my upper body upright. Good posture surely gets rid of some chronic back pain! Also working on yelling at my husband to make up for my soft voice!

  • Deleted User

    Deleted User
    October 16, 2019 at 5:20 pm

    hi gail,

    Welcome to the forum!  I am one of the moderators, diagnosed in 2015 at age 61. If there is anything specific you would like to see discussed on the forum, feel free to post a new topic in any of our forums or jump in on an existing topic:

    https://parkinsonsnewstoday.com/forums/

    i dont have tremors either.  my fatigue and bradykinesia are crushing….

    btw,

    i love your sense of humor 🙂

    Parkinson’s News Forums

  • richard gitschlag

    Member
    October 17, 2019 at 1:49 pm

    It’s hard to pinpoint my “first symptom”, as there were several seemingly unrelated things that had been developing over the months before my official diagnosis.  In no particular order, there were:

    My sense of smell had long departed.

    My wife started asking why I looked sad or angry when I didn’t feel anything like that at all (masked face).

    My wife asking about my walking “stiff-armed” (w/o arm swings).  I was unaware of this, but I had noticed my self-winding watch kept running down, even when I was walking vigorously every day.

    Once during an argument, I had a severe tremor in my hands & forearms (mostly right side).

    Once while target shooting with a handgun, I started to tremor in my right (gun) hand.  I just thought it was fatigue at the time.

    While cutting firewood with a chainsaw, I started to tremor in my right hand.  I just thought it was fatigue at the time.

    While hanging a new projector from an overhead beam at the church, I got to where I could barely turn a screwdriver, or hammer in a wire staple using my right hand.  That’s when I started to think that there was something else going on, and started seeking medical help.

  • Deleted User

    Deleted User
    October 17, 2019 at 1:54 pm

    Richard it is aMazing when we play armchair quarterbacks and we see the signs were there.  Interesting that u mentioned your self winding watch.  I have digital watches that r supposed to illuminate when turn your wrist.  I could never get any of them to illuminate.  Maybe it was the pd that affected my left arm.

  • Deleted User

    Deleted User
    October 17, 2019 at 1:54 pm

    Richard it is aMazing when we play armchair quarterbacks and we see the signs were there.  Interesting that u mentioned your self winding watch.  I have digital watches that r supposed to illuminate when turn your wrist.  I could never get any of them to illuminate.  Maybe it was the pd that affected my left arm.

  • Dan

    Member
    November 23, 2019 at 5:26 am

    2009 – increasing neuropathy left leg, rigid thumb/left hand, oily skin and reduced blinking. Somewhat simultaneously. Pain soon followed .

  • Deleted User

    Deleted User
    November 23, 2019 at 7:45 am

    dan, pd certainly has a lot of symptoms.  I consider myself blessed that i dont have pain or tremors.

  • Carol Rothfeld

    Member
    November 26, 2019 at 12:22 pm

    My first sign that something was wrong was when using the mouse for my computer my right hand would just fly away. The tremor which has now taken over my body continues to be my most difficult part of PD.

  • Deleted User

    Deleted User
    November 26, 2019 at 2:18 pm

    carol, dont you hate it when you tell your body to do something, it doesnt listen?  my left side is affected most by PD, i can no longer type like i used to because i cant tell how much pressure my left hand fingers are applying to the keys.

  • Susan Schlager

    Member
    December 16, 2022 at 2:03 pm

    My husbands first symptom as we look back was loss of smell about 10 years before he was diagnosed with PD. His dr said, “Oh, you are just getting older.” he has been seeing a naturopath for about 2 years who has put him on some homeopathics and nootropics and he now can smell some strong smells. A couple of years after he lost smell he started to develop ED and the dr through the little blue pill at him. It helped for a while but is useless now. This last symptom is hardest for him. He feels like a failure. I can’t convince him I love him just the same. Any men out there have any suggestions on how to help him feel okey about himself or ideas on what might make things work better?

    • Mary Beth Skylis

      Moderator
      December 19, 2022 at 11:55 am

      Susan,

      My dad’s experience was similar. He lost his sense of smell (long before the days of Covid 😉 ). Over time, he has been working with a natural doctor. And he’s fairly confident that he’s regaining some of his sense of smell. Did the natural doctor help your husband with that particular symptom?

      • Susan Schlager

        Member
        December 19, 2022 at 2:56 pm

        The sense of small started coming back after she started treating him.  I don’t know if it is the suppements she is giving him, the exercise he is doing or the acupuncture that she has him doing that is helping.

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