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    • #20383
      Mary Beth Skylis
      Moderator

      When my Dad was first diagnosed with Parkinson’s disease, I think we were all in denial. We knew someone else who had Parkinson’s, and we were convinced that my Dad didn’t have the same thing. But as time passed, it became more clear that he did have PD, after all. And once we got over our denial, we began to research everything we could to find ways to manage the illness. How did your loved ones respond to the diagnosis?

    • #20576
      Beth T Browne
      Participant

      This has been difficult for me.  Perhaps because I am too sensitive, or expect too much.  I moved to where I am now, because first, I had a lot of problems with the building where I owned a condo, and the HOA did nothing.  My son was concerned, it was major, after we did our own research, and advised me to sell.  I had been there 33 yrs.  It was an older building in another city.  And, he and my daughter thought since I was 80 and had no family near buy, I should move where one of them lived.  They knew, due to my health, it had to be in Southern California, still, and my daughter lives there.  My son is in WA state, rain, rain, cold, etc.  My lungs would not hold up.

      My son and I have always been close.  It has been a challenge with my daughter, as her dad, now deceased, was her favorite.  I suppose there are reasons as I was the disciplinarian.  Any way, I live about 25 min from her.  She was with me when I got diagnosed, which was such a shock.  I am a 28 yr cancer survivor also.  That day was a sad day, when it was confirmed I had Parkinson’s, but she never once hugged me, said she was so sorry, or mentioned it on the 30 min ride back home.  She does not call to see how I am, but if I need her for something, she will help.  I was happy that after all these years of not living close, we had this chance before I pass.  I am now 84, and I can still manage for the most part, but we feel sure I had Parkinson’s a year before I was diagnosed almost a year ago.  I can still drive, walk, pay my bills, etc. but I can tell I am progressing.  I could not handle the Carbidopa stuff.  Made me so sick to my stomach, I lost 6 pounds, and at 98, I could not afford to loose weight.  So, I have been taking just 15%, which is not helping the tremors.  And the tremors have caused anxiety, and sleep is a constant battle.  I am always trying something new that is not a prescription.  My son does call about twice a month, but he emails me daily, and sends me pictures of flowers almost daily now, as he knows I love them.  My grandchildren 27, 29, and 31, hardly ever call.  I know they care about me but they are living their life at this difficult time.  My first great grandchild will arrive in August.  I don’t know how or when I will see “it” as that granddaughter lives in WA also.  So, while I can say my children 64 and 63, are there for me, it is just not as I had hopped, I suppose, with my daughter.  I realize I could be childless and have no one, so I am praying and doing my best to except these challenges.  I cannot afford care at this time, and I do not want the children to have to pay, so I need to stick w/my budget, and hope my savings continue to grow.

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