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    • #21734
      Mary Beth Skylis
      Moderator

      We were in denial when my Dad got his first diagnosis of Parkinson’s disease. It was 2013, and he looked like he had always looked. Today, it’s been about 8 years since his diagnosis. We’ve learned so much along the way. How long have you known about your diagnosis? What do you wish you’d known earlier about the disease?

    • #21856
      Jack Waller
      Participant

      My husband was referred by our family doctor 11 years ago to a neurologist, who prescribed the maximum dosage of Sinemet, and told him he had seven years.

      • This reply was modified 1 month, 1 week ago by Jack Waller.
    • #21859
      Barbara Ford
      Participant

      The diagnosis was  made in 2013, but Looking back, the noticeable symptoms began maybe as early as 2005.

    • #21860
      Jack Waller
      Participant

      Ken was diagnosed 11 years ago. He had worked in the agricultural industry when he was younger. Of course no masks. We believe there is a strong correlation.

      • #21970
        Robert Li
        Participant

        Sadly, occupational use risk of paraquat, a herbicide, can increase Parkinson’s risk by a factor of 11 times, for people with certain (not too uncommon) genetics.  For everyone else, the risk factor increase is closer to 1.5 times.  Knowing that, there is some related research into slowing progression using antioxidants.

      • #21979
        Charles H Levin
        Participant

        There are now numerous lawsuits wending their way through the courts, seeking to sue the manufacturers of paraquat. It is illegal in more than 50 countries but not the US. Two state lawmakers in California are introducing a bill to ban it. Senator Cory Booker and someone from the House are also sponsoring legislation to do the same.

        • #21994
          Robert Li
          Participant

          That is good to hear about the paraquat!  There are many substances that are banned or restricted in the EU and other countries, but barely regulated in the U.S.  So we have to watch out for ourselves.  Exposure to metals dust like living next to an active train track can contribute to PD risk.  Don’t dig in the nearby soils!

    • #21872
      Rick Tabakin
      Participant

      I was officially diagnosed 3 years ago, but looking back I had symptoms at least 2 years before that. It was hard to believe that I had this disease.

    • #21876
      Sandy
      Participant

      We were in denial when my husband got his first diagnosis of Parkinson’s in 2016. After learning in the past 5 years, I see some of the symptoms may have started back in 2010. We should have been more aware of Parkinson signs since his father and aunt passed with Parkinson being around 50 years old. My in-laws don’t talk about it. My husband is 70.

    • #21890
      Krukar
      Participant

      I was diagnosed 10/20 with Parkinson’s disease. My wife and I noticed something 8 years prior to diagnosis. I drug my feet, peed a lot and fell some. Now that I have identified the culprit. Things are much better.
      Blessings,
      Mike

    • #21892
      Jack Waller
      Participant

      My husand was diagnosed by a neurologist 11 years ago, was given a massive dose of Sinemet, and told he had seven years

    • #21896
      Don Harris
      Participant

      I was suspicious that I had PD 10 years ago and it was confirmed 2 years later. PD has progressed very slowly to the extent that it is only early stage one.

      As any medication or treatment has no effect on the progression of PD but can only treat the symptoms I wonder what benefit there is to be gained in early diagnosis.

      • #22114
        Lee Ritsick
        Participant

        I agree.  What  is the point of knowing you have Parkinson’s unless it is interfering in your life.

        I was diagnosed a year and a half ago though as many others, I had symptoms earlier.  I went through alot of anxiety and fear and for what?  It can’t be cured or treated except for symptoms.  I guess I don’t get the need to know so early.

    • #21915
      Marjorie Weiss
      Participant

      My husband was diagnosed 19 years ago, young-onset, and likely had it for years before that. In fact, he had bad depression in the 90’s and that may have been the first sign. Later they thought it was essential tremor, and he managed for several years with it but then the real diagnosis.

      Deep brain stimulation gave him his life back in 2007 and 2009 since meds did not help his termors or stiffness. He is now 69 and just now dealing with the onset of balance issues, his dr calls Parkinson’s 2.5.

    • #21927
      Jack Waller
      Participant

      The neurologist who diagnosed my husband 11 years ago, gave him the maximum dosage of Sinemet, and said you have 7 years

    • #21926
      Rob Stehlin
      Participant

      I was able to identify the early symptoms 2.5 years ago and confirmed to have iRBD via a sleep study.  I recall the first signs being approx 4years ago when I jumped out of bed in my sleep. Most issues other than iRBD are minor autonomic and loss of most my smell.  I have been able to just about eliminate iRBD motor events with diet and supplements.  I am also researching as to the actual cause of the misfolded proteins and need the help of this community to find out.  I understand the agricultural connection but there could be another variable that is common throughout the community and could be working against us and the toxins we have accumulated over our lives.  For those of you that have completed my survey – THANK YOU – the data is quite helpful and quite informative.  If you have not completed my online survey regarding oral health please do at this link.

      CLICK HERE

      Please note, I do not share this data with anyone.  (I will share on this site once I get enough surveys – currently I have 110 responses and would like 300) I am a citizen scientist trying to prove the experts wrong and that there is a definable cause to PD and there are interventions we can do to stop or slow down the progression of PD.  I have no grants and fund all this myself.  The solutions lie among us, and it is up to us to uncover just what they are.  Please join me in really finding out what causes PD so we can stop its progression going forward.  I also have a website called whyrbd.com to help those with the disorder.  Very heavy on research papers.   We can do this…….

    • #21967
      Leslie
      Participant

      I was diagnosed with PD in 2007 @ 50 years old. looking back I had symptoms probably 2 -3 years prior to diagnosis, including loss of the sense of smell, micrographia, masked face, stubbing my toe while walking, my right arm would contract up until my hand was level with my chest, loss of coordination, strength & greater fatigue. It wasn’t until my hand began tremoring that the lightbulb lit in my head.

      • #21969
        Mary Beth Skylis
        Moderator

        Leslie, my dad showed many of those symptoms too. He especially noticed his loss of smell, but it wasn’t until much later that he related it to Parkinsons.

    • #21983
      Beth T Browne
      Participant

      I am 84. I was diagnosed July 2020. After talking to the doctor, it was decided I had it a year before, due to the symptoms I told her. An MRI of my brain showed lack of Dopamine.

      My symptoms at that time were tremors in my right hand, and difficulty sleeping. My doctor could tell by my walking and talk that I had a small amount of shaking in my head and slight balance issue in my walking. I saw none.

      Now, starting my 3rd year in July. I don’t see much change. I still drive, shop, cook, light cleaning, etc. I did just finish a balance class and am exercising more and using the treadmill at our gym. I hear it helps a lot. I did exercise faithfully 3 days a week for an hour and a half for 20 yrs. Two doctors said that definitely has helped and is showing now since I am not very bad. I still have some sleep issues. I have a leaky heart valve, serious lung issues I have had for years, and a esphogus motility problem that is bothering me and has caused lack of appetite. I also lost my sense of taste, which is probably PD. Working on that with new meds.

    • #21996
      Alan Berry
      Participant

      Known about 5 months. Suspected about 4 yeaars ago when neurologist was more angry at being unable to find proof than anything else. Since confirmed I am told my case is very mild. Despite this I get very fatigued and have to rest by noon every day. Also my memory and concentration are shattered. I am receiving no medications and my next neurologist visit is February 2022. I learn most from the daily news and forums with added knowledge expected from Support Group starting October 17.Despite lack of professional input I accept Parkinson’s and remain upbeat in my overall demeanour. Alan Berry.

    • #22004
      Robert
      Participant

      Good question MaryBeth,

      I was diagnosed with Parkinsonism in May 2018, and got a more definitive diagnosis at my third opinion (and current) neurologist in October 2018 which is when I started the magic pills.  At the time it was clear that my symptoms were far advanced for such a new diagnosis.

      After diagnosis, I frequently noticed that I was having so many more PD problems than those other guys I know who have had the PD for many years.  They seemed to be doing so much better than I ws.   I now believe that I have probably have had PD longer than some if not many of them.

      In the 3 and 1/2 years since then, I can now clearly see that I had some signs 5 years or more years prior to that.  I had been treated for nonexistent BPH 5 years before my PD diagnosis.  After the PD diagnosis I went through the elaborate Urological studies and found that I was having the beginning of PD bladder problems all along.  Not BPH.   That is just one of the long ago symptoms.   I also had an unexplained feeling of tiredness all of the time back then too.  The BPH pills were probably lowering my blood pressure at times throughout each day, which is what they can do to someone with PD.  I remember complaining to my internist at my annual physicals ” I did not expect to feel so old at my age”.  I would have been in my middle to late 50s then.  After many tests, we never could find the answer.  So I was told to not work so hard and take more time off or sleep more, etc.  To be someone other than my self suddenly in my 50s.   I now believe I was feeling the Parkinson’s slowly surfacing without knowing what was going on.

      With all of that, I think it is fair to say I am probably in at least my 8th to 10th year of Parkinson’s Disease.  That is how far back I can remember unexplained feelings of something being “Just not right with me” and the doctors not being able to find anything.

      Thanks,

      Robert C.

      • #22085
        Robert Li
        Participant

        Hello Robert C,

        Since you were diagnosed with Parkinsonism and not Parkinson’s Disease, have you had your vitamin D and erythrocyte manganese levels checked?  These can be involved in both Parkinsonism and true PD, but most neurologists and hospitals are not checking manganese (not to be confused with magnesium) levels.  I got mine checked by an ND but a functional medicine MD would probably do this as well.  Now that I my manganese levels are back in normal range, a lot of my long term issues especially having to do with sleep, bladder, daytime sleepiness, and muscle fatigue are minimal.

        Robert L.

    • #22067
      Alan M
      Participant

      I was diagnosed in 15 minutes by my neurologist, about 6 months ago. I most recently started on an introductory course of Sinemet (one tab in morn) but received a follow-up call from my neurologist and will likely be taking 2 and then 3 tabs per day of 25/100.
      I have heaps to learn — this much I know. The only supports I have are my wife of 23 years and the medical staff at our local hospital.

      • #22071
        Marjorie Weiss
        Participant

        There is a lot to learn, but being on this forum is a good step.

    • #22072
      Fran Adler
      Participant

      I was diagnosed about 7 months ago….looking back I surely had symptoms 2 or 3 years previous….I have no tremors. and so far my only problem is walking slowly and cannot go very far….when people ask me why I can’t walk properly  I just say its from my hip replacement 1 yr ago…I don’t tell anyone what  I have….don’t want any sympathy …..it is what it is…,I am 79 yrs old and the doctor says I should be good for 10 yrs….who knows….just take it day by day…I do pool excersizes 3 times a week…..

    • #22096
      Robert
      Participant

      Hi Robert Li

      Another member of the very large “Robert” club.

      Thanks for the info regarding Erythrocyte Manganese vs Magnesium blood tests.

      I will look into this.

      My Vitamin D levels have been chronically very low.  I take daily pills for this and we monitor it closely.  Also, my PD doctor has had me on something called Folbic for the various vitamin Bs since the start.

      Thanks,

      Robert C

       

       

      Thanks again.

      Robert C

       

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