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Let's Talk Frankly: About Life with PD from a Caregiver or PWP's Viewpoint

Let's talk frankly about your inner feelings of being a PWP (Person with Parkinson's) or a caregiver's point of view. Let us talk freely. Let's help each other. How about contributing your thoughts?
Marc M., Parkinson's Disease.Net, Advocate

  1. Hi Mark, Good topic. Talking frankly helps bring out the good, bad and the ugly of PD. In my personal experience, my father (age 86) has had PD for 15 years and dementia for a few years. Dad has been fortunate that physically he is in pretty good shape. He has followed the doctor's orders (mostly) to medicate as prescribed and physical therapy. He isn't from a generation that regularly went to the gym so this a challenge for him from the get go. He was more the type of putzing in the house and yard. He is more recently challenged by cognitive changes and this is what led to more trials for my mother and I as each day is different with his mood swings and hallucinations. What has helped immensely is to find the right assistance and in my parents case this is hired caregivers who come to the house six days a week. Also, my father attends an adult day service one day a week on their senior campus. I count my blessings that dad is still with us. He has his sparkle in his eyes sometimes. On the days he doesn't, I say a prayer. He has always maintained a sense of humor so this is a point to focus on.
    I would be more than glad to share more if anyone has any questions.
    Best regards, Suzanne Troy, fellow Advocate,

    1. Hi Suzanne, It sounds like you have a wonderful family to take care of your dad and anticipate his current and future needs. As a nationally certified Speech Pathologist, when treating dementia patients in my practice, I use reminiscing techniques, showing old pictures of the family members, vacations and images of places of the past are good conversation extenders. To deal with mood swings, hallucinations, etc., I personally recommend, not trying to correct his thoughts, or challenge him, but to speak to him calmly, and respond to him in his reality at the moment. By doing so, the current situation will dissipate and he will forget it. I recommend reading, The 36-Hour Day: A Family Guide to Caring for People Who Have Alzheimer Disease, Other Dementias, and Memory Loss
      by Nancy L. Mace, Peter V. Rabins. Let me know how you are doing. Best, Marc M.,, fellow Advocate

      1. Hi Mark, I appreciate your thoughts and tips. We do look thru photo albums with my dad as he as an avid photographer and he and my mother travelled alot. It is a nice way to reminisce with him. It's surprising how he can remember facts from history and not much from recent moments. In regards to his mood swings and hallucinations, we have learned similar tips thru a social worker. We follow the same tips that you recommended. Thank you. Also, I appreciate the book recommendation. I'll have to check it out. Thanks again for your input.
        Take care, Suzanne T.

        1. Thank you for the kind remarks. Please keep in touch and let me know how you are doing. I care.
          Marc M., A fellow Moderator, ParkinsonsDisease.Net

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