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    • #14907
      Ally
      Keymaster

      What was your earliest symptom of Parkinson’s disease? Did you talk to your doctor about it right away, or did you wait awhile? Did you immediately suspect it was PD or was hearing your diagnosis a surprise to you?

    • #14908
      Bob Hodgson
      Participant

      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.

      • #14909
        Ally
        Keymaster

        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?

    • #14910
      Bob Hodgson
      Participant

      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.

      • #14911
        Jean Mellano
        Participant

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

      • #14918
        Ally
        Keymaster

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

    • #15446
      Mike P
      Participant

      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.

    • #15466
      Jean Mellano
      Participant

      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

    • #15468
      Jean Mellano
      Participant

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

    • #15469
      Jean Mellano
      Participant

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

    • #15471
      Andrew L.
      Participant

      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.

      • This reply was modified 1 year, 1 month ago by Andrew L..
    • #15467
      Mike P
      Participant

      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.

    • #15476
      Jean Mellano
      Participant

      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

    • #15984
      Mick
      Participant

      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”

    • #15997
      Jean Mellano
      Participant

      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?

    • #16084
      Yaman Kahveci
      Participant

      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

      • #16085
        Jean Mellano
        Participant

        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…

      • #16086
        Jean Mellano
        Participant

        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…

      • #17166
        Ally
        Keymaster

        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?

    • #17160
      Susan Lyn
      Participant

      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.

    • #17162
      Jean Mellano
      Participant

      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.

    • #17171
      Joe Escobar
      Participant

      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.

    • #17181
      Yaman Kahveci
      Participant

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

      Thank you for your caring 🤗🤗

    • #17473
      Mary Beth Skylis
      Moderator

      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.

    • #17481
      Kim Mortson
      Participant

      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.

    • #17482
      Joe Escobar
      Participant

      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.

    • #17483
      M Emmerling
      Participant

      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?

    • #17486
      Andrew L.
      Participant

      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

    • #17498
      Mary Beth Skylis
      Moderator

      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.

       

    • #17499
      Mary Beth Skylis
      Moderator

      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.

    • #17500
      Mary Beth Skylis
      Moderator

      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?

    • #17507
      M Emmerling
      Participant

      Thank you all. I find comfort in knowing there’s a place I can share my experiences with others that are also dealing with PD. I am going to do my best to remain active and not allow PD to prevent me from doing things I enjoy. I am prepared to accept that I may not be able to do as much as I once did.

    • #17512
      Mary Beth Skylis
      Moderator

      M,

      Im glad to hear that you’re determined to fight PD. I know how scary it can be to have to face it. But it sounds like you’re doing all the right things and you have the right attitude. Keep at it!

    • #17579
      Sara Beth Haven
      Participant

      Looking back in my mom’s history and having done some research, I would say her first symptom was loss of smell about 12 years ago.  Of course that was not even a consideration when it happened – just a weird event that we all laughed about when she could no longer smell unpleasant odors!  Now over the past 4 years, she gradually developed a right arm tremor (non-dominant side) which we blamed on benign essential tremor as it is familial, then over the past two years, she has become quite stooped in posture, but we attributed that to her scoliosis, and in the past 6-9 months, foot dystonia, which we blamed on her knee issue which was treated with TKA in July.  Needless to say, after general slowing and worsening arm tremor prompted a visit to the primary care physician and a new diagnosis, we can now connect many of these dots from many years prior.  At 79 and with many things still left on her bucket list, the rapid presentation of worsening symptoms over the past year has been quite unsettling.

    • #17587
      Mary Beth Skylis
      Moderator

      Sara Beth,

      that sounds like a particularly confusing journey. Sometimes I’m still surprised at how complex and unpredictable the human body is. My Dad (diagnosed in 2013) noticed his sense of smell going too. And he always thought it was because he had polyps, which were eventually removed. But the removal made no difference. Years later, he started to notice a tremor in his right foot. And then the symptoms grew to be more developed. As someone who struggles with complicated (autoimmune) symptoms, I know how distressing it can feel to not be able to label what’s happening. I hope you’ve been able to find comfort in discoveries — even when they’re difficult ones.

    • #17601
      Duane Baumgartner
      Participant

      Hello my fellow Parkies.

      Looking back I think my first symptom was loss of sense of smell.  I honestly can’t tell you when this happened but at least 15 years ago.  It was something that just seemed to fade away, losing it a bit at a time until now where I can hardly smell anything unless it has a very strong odor, of course the sense of taste has followed along.

      Ten years ago, while I was still working, I noticed a tremor in my left cheek and at times my arms would feel so heavy I could not hold them up.  I am a carpenter and I mentioned this problem to my GP, that when turning a screw on the job, with a screwdriver I could not complete the task because my arms felt so heavy.  He suggested I buy an electric drill.

      Five years ago after enduring many PD symptoms, which come and go, I finally convinced my GP to send me to a neurologist. This opened a whole new can of worms.  To date I have been to 5 neurologists and 3 of them say I have PD, 2 say I don’t!

      Three years ago I finally was prescribed LEVODOPA & CARBIDOPA which has helped with many of my symptoms, though all my symptoms seem to be on a  carousel, coming and going, which seems very bazaar to me.  Some are mild conditions (tremor in my cheek or left hand) or more severe (achy shoulders, fatigue, constipation, imbalance or jittery feeling inside my whole body).  Is this a normal progression with PD, if there is a NORMAL PD progression?

      I only see my neurologist once a year because of her schedule so my meds have been handled and manipulated by my GP, who doesn’t know much about PD, and my druggist who is fairly knowledgeable about the disease as he has been working with his best friend who has PD for the last 15 years.  I have done lots of research on the disease and both of them are receptive with me when I have input, which I appreciate.

      If you have made it this far into this long winded explanation of my condition, thank you.

       

    • #17606
      Stuart Maxwell
      Participant

      I was diagnosed in 2016 at the age of 57 however I knew soemthing wasn’t right about 4- 5 years before this when my stomach started to bloat and I had bouts of constipation which, after having cameras up and down, was incoreectly diagnosed as IBS.

      As Managing Director of a large company I had started to feel much less confident when giving presentations and my concentration levels were not as sharp as they were. My handwriting started to get worse in 2015 and my voice had started to soften especially in a crowded environment plus. I also noticed the odd slurred word and had started to feel anxious that something was seriously wrong with me, not helped by some night sweating, and aching legs resulting in a lack of sleep. My best friend had also noticed I wsa  a bit slower in my movement.

      After researching my symptoms on the internet I was pretty certain that I had PD so went off to my doctor who was adamant that I didn’t have PD as there was no tremor and no obvious signs. I asked to be referred to a neurologist and all the physical tests he carried out were negative though he did notice I didn’t blink much and as I had private health cover, suggested a PETscan. The scan in April 2016 confirmed I had PD.

      Immediately following the diagnosis I felt full of fear and anxiety but that soon passed. The neurologist who I continue to see every 6 months is great and keeps me motiavted. I currently have no mobility problems and am playing the best golf of my life. Since diagnosis I take co-careldopa 3 times a day and rasgailine but don’t feel any benefits and to be honest, I wish I hadn’t started. I  take a number of supplements and still have no tremor and my smell and taste senses are good. and the only symptoms which really bother me are the slightly masked face, soft voice plus some days I do feel a bit tired especially following some strenuous activity. I also still have the occasional night sweat but some leg stretching before bed keeps the aches away and I now sleep very well.

      All in all I’m in prertty good shape but realise it won’t always be this way so try to live everyday to the full.

       

    • #17607
      Jean Mellano
      Participant

      Hi stuart

      thnx for sharing. Did u get a . PETSCAN or a DaTscan?

    • #17608
      Stuart Maxwell
      Participant

      Hi Jean

      Sorry yes my mistake, it was a DATscan.

      Best

      Stuart

       

    • #17609
      Jean Mellano
      Participant

      Thnx Stuart for the clarification.  I had one too (https://parkinsonsnewstoday.com/2018/12/18/parkinsons-disease-datscan-dopamine-transporter-levodopa-carbidopa-rotigotine-spect-imaging/  )

      and was just at a meeting of the sales force  who sells DaTscan . Did u have a feeling of relief after the results that you know had a better handle on what was ailing you?

    • #17612
      Mary Beth Skylis
      Moderator

      Duane,

      I’m not sure that there is a normal progression. But I can tell you that my Dad (diagnosed in 2013) experienced many of the same symptoms. He first noticed his sense of smell too. From what I’ve been able to understand, it seems like everyone experiences PD a little bit differently. And there was some disagreement among my Dad’s doctors while he was being diagnosed as well. I’ve never heard of symptoms quite being described as if they’re on a carousel. But I do know that my Dad says he has “good days and bad days”. So it seem that they’re not particularly consistent in terms of their intensity. Hopefully, you’ll get some answers soon.

    • #17613
      Mary Beth Skylis
      Moderator

      Stuart,

      I find this misdiagnosis part of your post very interesting. My Dad has Ulcerative Colitis and was diagnosed with PD in 2013. And I’ve always suspected that it’s not a coincidence that he has both. So I’ve done some research to see if the gut has been linked to PD, and it turns out that we are 1.7 times more likely to experience PD if we also have IBS (https://www.ncbi.nlm.nih.gov/pubmed/24442494). Have your doctors determined that the IBS diagnosis was totally incorrect?

    • #17619
      Stuart Maxwell
      Participant

      Hi Jean

      I did feel relief to start with knowing what is was I had but……..then the demons started entering my head, how quickly will it progress, what type of PD did I have? etc

      it took me about a year to get my head around everything and seeing my neurologist every 6 months really helps as he’s very positive. Since my diagnosis in 2016 my symptoms haven’t worsened a great deal so I’m hoping it is a slow burner.

      Best

      Stuart

    • #17623
      Duane Baumgartner
      Participant

      Thanks Mary Beth for the reply.  It is nice to know I’m not alone with these revolving symptoms.

      Hi Stuart  I was wondering if your doctor acknowledged night sweats was one of your symptoms?   I ask this because I had night sweats really bad about 20 years ago.  They were intermittent, but several times a month, for a couple of years.  That mystery has never been solved by any of the many doctors I have been to.

    • #17624
      Robert Harris
      Participant

      This is for Joe, regarding his sudden crying. Here is a description of my own emotional reactions:

      I gradually became aware that sometimes when speaking to a group or a Sunday School class, my voice and throat would suddenly and unexpectedly choke up with emotion, even though I didn’t feel emotional otherwise. I eventually noted that the choking up seemed to be connected to ideas and events that I felt strongly about or that involved successes where “the good guys won.” For example, when I gave a PowerPoint presentation to prospective customers about the company, I got choked up slightly when I covered the many awards I had helped my company to achieve. It meant a lot to me. The company VP liked this “sign of deep concern,” so he invited me to several sales presentations to prospective clients. This was in 2008 or so, and the choking and emotion were not overly intrusive.

      As time went on, the emotional impacts increased. I began to notice that when something “good” happened on a TV drama, such as when the hero wins or when the villain is exposed, I would start to sob for about 20 or 30 seconds.

      Now, when I talk or read aloud, quite uninvited, all of a sudden, I will choke up and have to stop talking, because I cannot be understood, so firmly does the emotion choke off my voice.

      The reaction is unpredictable. Recently my wife and I were watching a biography of economist Walter Williams. The narrator mentioned that Walter was highly influenced by Friedrich Hayek. I started sobbing uncontrollably and the crying lasted for over a minute. My wife was surprised and confused. She didn’t know how to console me. After I regained my composure, I explained that Friedrich Hayek was one of my brother’s favorite economists. Before he became ill, my brother earned a degree in economics and was fond of talking about Hayek and his theories regularly. After my brother succumbed to schizophrenia, I took care of him for many years as he suffered horribly, afraid of assassins, poisoning, bomb attacks, thieves supposedly stealing his ideas, and so on. The unexpected mention of Walter Williams and his interest in Friedrich Hayek brought a rush of memory to me about my brother and how his life, career, and accomplishments were destroyed by his disease. The emotions swept over me and I sobbed.

      Needless to say, when this outburst of emotion, half crying, choking, and so on arrives in the middle of my conversation to strangers, and even to acquaintances, I feel like a fool. I want to say, “Hey, I’m not really that worked up about putting Christmas lights on the eaves of the house, it’s just my Parkinson’s brain that thought the idea was extremely moving.” But as I said, the reaction stops me from talking. If I try to talk anyway, my words emerge distorted and drenched with what appears to be uncontrollable sorrow. I usually make a strong effort to stifle down the emotion, but most of the time I simply have to be silent for a minute or two.

       

    • #17645
      Mary Beth Skylis
      Moderator

      Robert,

      Do you find these emotions to be a hinderance? Or do you feel like you’re responding to emotional moments in an appropriate way? Maybe the rest of us just swallow the depth of our emotions.

       

    • #17650
      Stuart Maxwell
      Participant

      Hi Duane

      Yes the neurologist confirmed night sweats are a symptom of PD – well in my case it was and still is to varying degrees.

      Best

      Stuart

    • #17651
      Stuart Maxwell
      Participant

      Hi Mary Beth

      Despite the doctors saying I had IBS in hindsight I feel it was just a symptom of PD ie bloating and constipation. I had no pain but just felt full and fat though now I hardly notice it.

      Best

       

      Stuart

    • #17671
      Mary Beth Skylis
      Moderator

      Stuart- I’m glad you’re feeling like you know what it is now. I can’t imagine that journey was simple.

       

      MB

    • #17702
      Tina
      Participant

      Joe and Robert I appreciate you describing your emotions. I was known for controlling my emotions and keeping my head in professional situations when others were losing theirs. The last two years I’ve been staying home because I laugh or cry at the simplest things, sometimes uncontrollably. Going out to the movies is especially bad.

      My first symptom was a cogwheel tremor in my left arm when I was 40. After an auto accident from a blackout seizure, a physical therapist found it. I had never noticed it and didn’t even know what it was. About 1 year before that accident I had to pull over on the side of the road as I couldn’t move the left side of my body.

      Then small tremors started, intestinal issues, crying spells, seizures and falls. I was forced to retire as I could no longer drive or type, as my left arm shook uncontrollably, but only when typing. Then my gait changed and I had to use a walker at 55. I did a lot of physical therapy and was able to eventually stop using walking aids.

      The whole time I was seeing a neurologist along with multiple other doctors. It wasn’t until my current neurologist asked me to walk across the room and saw me walk without an arm swing that she diagnosed PD.

      I was shocked and angry, but I accepted it when I realized it explained why I was having hallucinations, losing my singing voice and my talking voice got hoarse and stopped.

      Now I’m on a dopamine agonist which has controlled the hallucinations and tremors. My gait is still extremely slow and I have extreme osteoporosis so I’m really trying hard not to fall. I was first diagnosed with bone loss when I had that accident which seemed at the start of my PD. I’m 62 now so that would be 20+ years since my first symptoms. Not exactly early onset I think since it’s been a very long and slow journey for me

    • #17722
      Roy
      Participant

      Roy’s first step toward a diagnosis of PD was twice fainting from Orthostatic Hypotension.  He worked at a home hardware store and had been experiencing lightheadedness and dizziness when he stood up and moved quickly at work, or when he bent over to pick up product from the floor. For years, he had been running a machine to place product on upper shelves. He began feeling anxious and woozy about using this machine. He was noticing his arm strength, especially on his left side, would give out on him.   Then, after bending over one night to flush the toilet, he fell right back and passed out. He jumped right back up, walked into the bedroom and passed out again, hitting his head on the floor again. After an OH diagnosis, I began an internet search, along with one of Roy’s sons, as we didn’t know much about it. Individually, we ended up researching PD. We both came to the conclusion that Roy was experiencing many symptoms of PD.  He had the left side weakness, leg cramps, head forward gait, slight drag on the left leg, quiet voice volume, shaking when using heavier tools, lack of a smile, and arms (esp. the left) that stay stationary when walking. He also had dreams that were so real to him that he would yell, punch, grab and even fall out of bed while he re-enacted his dream in our bed. These had been going on for 15+ years. His son and I then began asking his PPC to look at PD and he referred us to a wonderful neurologist that diagnosed him.  The whole process of diagnosis took 4 years because a bout with cancer of the tonsil took front seat for about 2 years.

    • #17725
      Mary Beth Skylis
      Moderator

      Roy,

      That sounds like a terrifying journey. Once you started to understand your symptoms, were you able to do things to help alleviate them?

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