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    • #24010
      Ally
      Keymaster

      Does anyone else in your family have Parkinson’s? Do you ever talk to them about your experience with PD?

      If you’re the first person in your family to have PD, are you concerned about others (e.g., your children) being diagnosed as well?

    • #24021
      Jeff
      Participant

      Hello, My grandfather had Parkinson’s. We didn’t know till he died from kidney failure when he was 91.

      • #24027
        Bud
        Participant

        I’m the first one in my family to have P D . I’m a little concerned that my daughter’s may have a chance of getting P D. I’m not sure but I think mine is enviromentel. I have had P D for 16 years.

        • #24055
          Ally
          Keymaster

          Hi Bud, thanks for sharing. What makes you think your PD is environmental? Have you talked to your daughters about your concerns for their health?

        • #24064
          Bud
          Participant

          Hi All. I have not spoken to my daughter’s about my concerns of them getting P D. I think they’re low risk . However I’m a parent so I do have concerns about them contracting P D. The reason I suspect my PD is enviromentel is in my life I have worked around contaminated soil  and toxic chemicals most of my life. I’m! In a study right now to see if that is the case. I will let you know the outcome. If you’re interested.

        • #24078
          Ally
          Keymaster

          Hi Bud, I would be interested in to know more about your experience in the study and its findings, if you’re comfortable sharing. I think others in the forum would benefit from hearing about your experience, too. Thanks for replying.

        • #24101
          Bud
          Participant

          Hi Ally I would be happy to share what I find out in the study. It will take 10 to 12 weeks so I will let you know when I find out.

      • #24057
        Ally
        Keymaster

        Hi Jeff, that’s really interesting – how did you find out? Was it revealed post-mortem?

      • #24117
        Barbara Ernest
        Participant

        My wife who passed away at age 79 from a fall down a flight of stairs had diagnosed PD for over two decades. She started having frequent falls in the last five years of her life. She had no tremors, but her mobility, balance and dexterity worsened in her later years. Her changes in voice and visual hallucinations were obvious symptoms. To my knowledge no one on her side of the family had neurological issues, but the number of people is limited.

        • #24122
          Ally
          Keymaster

          Thank you for sharing, and I’m very sorry about the loss of your wife, Barbara.

    • #24044
      Marla Klein
      Participant

      My husband’s father had PD and was diagnosed at same age of my husband. Sadly he passed at 82 my husband is 78. He fears he will go like his dad.

      • #24056
        Ally
        Keymaster

        Hi Marla, thank you for sharing and I’m sorry for your loss. How is your husband coping with his diagnosis now?

    • #24075
      Patricia McCormick
      Participant

      My grandmother had PD. I wish she was still alive so I could talk to her about her experience. Her symptoms were completely different than mine. My daughter is afraid that she will get it someday too. I hope she doesn’t.

      • #24079
        Ally
        Keymaster

        Hi Patricia, thank you for sharing. I’m sorry your daughter is afraid, though it is certainly understandable. Have you or she talked to your doctor about risk factors or watching for signs/symptoms?

    • #24116
      Jeffery Hill
      Participant

      My father had Parkinson’s.  He first noticed symptoms at the age of 57.  I noticed my tremor at 56, but looking back I realize that I lost most of my sense of smell many years prior to that.  I was tested for known genetic markers, but the results were negative.  My father was possibly exposed to pesticides when he worked on his aunt’s farm as a teenager.  I am not aware of any acute exposures that I may have had. My father’s cousin was also diagnosed with PD.

      • #24123
        Ally
        Keymaster

        Thanks for replying, Jeffery. Are your father and his cousin still living? Did you or have you ever spoken to them about PD?

    • #24118
      Jeff
      Participant

      If memory serves it was the nursing home that revealed that he had it.

    • #24121
      Paulette Bennett
      Participant

      My husband (78) and I (76) were both diagnosed with Parkinson’s in 2018. My older sister also has Parkinson’s and was diagnosed about 6 years before me. We all have different symptoms but medication handles them pretty well.

      • #24124
        Ally
        Keymaster

        Wow, Paulette, that’s a lot of Parkinson’s in one family. I’m glad to hear the medicine is working for you all. Does it help to have others who are close to you living with the same disease? (I.e., someone who understands what you’re going through?)

    • #24126
      Katherine
      Participant

      My PGM had 5 sisters, one of whom had PD — which I only learned recently. Three of the 5 sisters had children, 4 boys and 2 girls. One son by each of the three sisters developed PD. I am the only descendent out of 15+ offspring to have PD. I diagnosed my father when he was 71 years old and had come to visit us. The trip took 5 hours and he complained about severe stiffness. When he got out of the car, I realized that he had poverty of associated movements and masked facies, as well. When I told him that I thought he had PD, he responded indignantly, “I do not!” I never said anything after that. I chose to work for one year in Neurology during my Psych Residency, and saw patients in the PD clinic for one hour/wk. It was another 10 years till his Family Doctor diagnosed him (he had mild PD), and another 10 years until he chose “death with dignity”, which was allowed in the state where he died. My father’s two cousins didn’t do as well as he did. One of them developed severe hallucinations, and died after 5 years. The other died after 10 years.

      I had a severe anoxic episode at age 59, and as a result developed hypoxic damage to my frontal lobe which thankfully has improved significantly over the past 10 years. I also had damage to the my basal ganglia which is not uncommon following an anoxic episode.
      I believe that it would have been at least another decade till I developed PD, were it not for the (iatrogenic) anoxia. Strangely, I wasn’t upset when I was told that I had PD — probably because I had already diagnosed myself! I think that my father’s fabulous attitude toward having PD has made a real difference in how I handle things. He never complained. When asked how he was doing, he would chuckle and say, “I’m in good shape for the shape I’m in.” I always loved that, and am beginning to use that sentence myself. I DO complain! However, I think that my PD has been far, far more debilitating that his. He only fell once; I have fallen hundreds of times, and have had multiple fractures. He did not have ANS problems; I am riddled with them. Interestingly, we both have “central hearing loss”, a symptom of PD! I’d never heard of it before. My father thought he was just “hard of hearing”, but hearing aids did little to help.

      So, in summary, I have dealt with many, many, many problems caused by PD. I had one completely “normal” day not too long ago. I was stunned and thought to myself, “So THIS is what my life would be like at age 69, if I didn’t have PD!!” It was like the best gift EVER. I wish that every day could be like that day… Since it can’t, though — (at least not until I go to Heaven which, yes, I not only believe in but have also been there and long forward to returning — I take it a day at a time. Probably the apathy which has led to social isolation, which in turn has led to loneliness is that toughest problem facing me. In addition to apathy, I have such severe exhaustion that doing anything other than the bare minimum feels overwhelming. I have to really work to not be isolated. Also, I worked very hard on exercise, but so many falls just took the pleasure out of it for me. Trying to get back into it again. I hope that I don’t die by choking to death. I have had two very serious episodes and they were terrifying. I’ve wondered if drowning is like that, or is it different in some way?

      My greatest concern is my daughter. I fear that on top of EVERYTHING she has had to deal with her entire 27 years on earth, that she might — God forbid — also have to deal with Parkinson’s. There is no way to express how much this worries me. She has struggled with a dozen different serious medical problems since birth. She had multiple birth defects + some new, very serious acquired problems. I was 42 when I had her, so I also worry about how she will do without me. I’ve been working with her on explaining our will to her; showing her my Living Will and how to work with my doctors on this, if it becomes necessary; writing down all of the things she will need to do after I die (her Dad is Tibetan and will not be of much help to her, unfortunately). I’m so proud of her, because she seems to be taking it all in stride (my death). She has wondered if she might get PD, like me. I have reassured her that, should that happen, there are so many new breakthroughs already occurring in the treatment of PD that I believe it may become a far less serious and debilitating disease.

      • #24200
        Ally
        Keymaster

        Hi Katherine, thank you for sharing so much of your experience. You never know who will read it and relate, or find something helpful in what you wrote.

        Have you talked to your daughter about how she is handling your diagnosis/progression? I wonder if she would be interested in joining this forum and sharing some of her insights with other children/loved ones of people with PD.

    • #24130
      nancy ann masiello
      Participant

      My father had it but he was in his 80’s when diagnosed. It showed up in me at 58. I read that only 7 percent is inherited and most is environmental. My father had no tremor just stiffness. I have a slight tremor and stiffness. I live in the middle of the San Juaquin Valley. We grow lots of produce, nuts and fruit This means lots of crop dusters were flying at any time of day when I was young. We could see them from the school yard.

      • #24133
        Mary Beth Skylis
        Moderator

        Nancy, do you think your variation of PD is genetic or environmental? Or a combination?

    • #24141
      Fred Barnett
      Participant

      I was diagnosed with Parkinson’s in 2011 at age 72, 10 years ago. My mother had tremors from in her 40’s until she died at age 94. My brother had tremors from age 78 to 84 when he died. I suspect that both of them had Parkinson’s although they were never formally diagnosed with it. They never took medication for it as I do. I will soon be having Focused Ultrasound, as well. I worry that my son will get it too. He is now 45 and has shown no symptoms so far. None of us has been exposed to any pesticides or anything to the best of my knowledge, although I have done some welding. I think that it could be hereditary in our case, but who knows?

      • #24199
        Ally
        Keymaster

        Thanks for replying, Fred. Have you and your son talked about your concerns that he may also be diagnosed with PD? Is he working with his primary care physician to monitor for signs/symptoms?

    • #24161
      Alan M
      Participant

      Hey Ally:

      You raise great topics for us to reply to.  Thanx.

      I was diagnosed with PD in late April of 2021 by my Neurologist, at the age of 66.  I reckon I was experiencing certain early symptoms about 18 mos to 2 years before this, including wee tremors in my RH.  I always thought PD was a degenerative disease like ALS and MS but was shocked to learn it isn’t hereditary.

      After learning this about myself, I also discovered that an aunty of mine has had it for 4 -5 years already.  Her age today is 78 years old.  She has the falling kind of PD, and it is suspected she may also have a form of dementia.  Her older siblings may have had it before this aunty.  Not sure.

      • #24198
        Ally
        Keymaster

        Thank you, Alan, and thanks for replying. 🙂

    • #24166
      Ann Schwalm
      Participant

      My husband and I have both been diagnosed with PD, he is April of 2018 and me in the fall although we had both been seeing a neurologist for a year or more before that.  He just never gave us a definite diagnosis.  We changed doctors because he did not seem very helpful.  I have few symptoms so far, just the tremor which is mostly controlled with Sinemet.  My husband’s symptoms have increased dramatically since 2018.  He needs full time help due to extreme instability and has delusions and hallucinations.  He also had three TIA’s during the past summer.  His father also had PD and one of his three brothers does as well.

      • #24197
        Ally
        Keymaster

        Hi Ann, thank you for sharing. That sounds really challenging. What kind of support do you and your husband have? E.g., are family members or perhaps professional caregivers available to help you?

        Have you and your husband talked about your plans for future, anticipating that your symptoms will likely progress?

    • #24220
      Janet LeBlanc
      Participant

      My maternal grandfather had PD.

      • #24296
        Ally
        Keymaster

        Hi Janet, thanks for sharing. Is your PD hereditary then? Does your PD present like your grandmother’s did?

    • #24324
      Linda M
      Participant

      Hi Ally,

      I have had PD symptoms for 10 years but was only diagnosed 3 years ago.  I am the only one in my family. However, my family is beset with multiple autoimmune issues.  I have a son (51) who seems to have been spared both.  I recently joined 23 and Me and purchased both parts: ancestry and health.  Not surprisingly, I am 99.9% Northern European (English and Irish). Surprisingly, my health report showed that I carried no variants for PD.  That means that my PD is most probably environmental, and I felt some comfort in the fact that I may not have passed this to my son.  He is also being tested to confirm my findings.  Perhaps, another participant with a genetic background would like to expound on this further.

      Note: the reports provided by the service were fascinating.  As a family, we have enjoyed learning about our heritage, comparing shared traits, and finding many DNA relatives.  Well worth the cost. (Disclaimer, I am not affiliated with this service.)

    • #24339
      John William
      Participant

      I was diagnosed with PD 2 years ago at age 69.  Sleep disruption, fatigue and a few tremors are the only symptoms I have so far.  An uncle develop PD at age 58 and lived to 72.  So mine is probably genetic, yet some of it might be CTE from multiple head traumas playing many years of football.

      • This reply was modified 4 days, 19 hours ago by John William.
      • This reply was modified 4 days, 19 hours ago by John William.
      • #24342
        Ally
        Keymaster

        Hi John, thank you for sharing. Are your symptoms similar to those your uncle experienced, or is your disease manifesting differently? Also curious to know if any of your former teammates have also been diagnosed with PD.

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