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  • Who are you in relation to your person with Parkinson’s?

    Posted by mary-beth-skylis on March 9, 2022 at 10:09 am

    We have such a diverse mixture of people on this forum, that I’m very curious about everyone’s individual experience. I’m the daughter of a man with Parkinson’s. Who are you in relation to your person with Parkinson’s?

    gil-williams replied 9 months, 1 week ago 14 Members · 14 Replies
  • 14 Replies
  • marla-klein

    Member
    March 10, 2022 at 2:24 pm

    I am a wife to a parkinson patient. As of late his caregiver too. It has been a roller coaster as we learn to adjust to life with this illness. I suspect my husband has had it for at least 6 or 7 years . There were so many signs I didn’t get it until falling and tremor grew worse and short term memory kicked in too.  Doing well so far on the meds but have had problems with his voice  now. He is in speech therapy and boxing at his physical therapy place with few other parkinson men once or twice a week. He developed skin cancer recently and had melanoma on his skull Squamish cancer on his arm removed 4 weeks ago and now some basil popped up too. Recovered nicely this week back in his therapies so hopefully will be doing better as he had bad days with his parkinson after the surgery and during recovery.  Our life has changed a lot as he now prefers to stay close to home and he has good and bad days. We are at a motion disorder neurologist for  about 9 months now. She placed him on correct meds and since on proper meds the falling has stopped for now. Also he is Dressing better just zippers still hard for him. All in all we are managing our kids Live far so I’m doing best I can in taking care of him. I wish  everyone well on this journey.

    • julesbunny

      Member
      June 19, 2023 at 9:51 am

      Hi Marla,
      Your journey is sounding similar in some ways to my husband and I. I am his wife and he has the PD, 25 years now. Age 61. I was interested in what Meds your husband is on, in that it helped some with falls, which is a big issue for my husband, and speech.

      Hope things are evening out and that you are handling everything at present. Sorry delay in asking question but have only just logged on again.

  • tekisui

    Member
    March 10, 2022 at 3:41 pm

    Nephew to a late-stage patient with severe dementia, who was developmentally disabled prior to his early Parkinson’s diagnosis and needs someone there 24/7…  My qualifications consist of being the only sibling who’s single, childless, and semi-retired.

    I split time with my mother (his sister) as long as we could handle it ourselves, and since 2018 we’ve hired several caregivers too.

  • theresa-hupp

    Member
    March 21, 2022 at 10:20 am

    I’m the wife of my husband with Parkinson’s.

    When I read this question, however, I went straight to “I’m a caregiver, nurse, financial manager, healthcare advocate, cook, household manager, driver, etc., etc.,” — everything but wife, because it doesn’t feel like there is any partnership between us anymore. I do everything. He does what he can of what he wants to do.

  • corrie-trattner

    Member
    March 22, 2022 at 2:29 pm

    My husband passed away from Parkinson’s, Bipolar Disease, and a host of other conditions a year ago on March 6, 2021.  I have to agree with Theresa.  Although I am a registered and licensed occupational therapist, I also was all of the other things that Theresa listed.  Many prayers and blessings to you all.

     

    • brenda-reese

      Member
      March 22, 2022 at 8:09 pm

      Theresa, you just described to a “T” exactly all the things that I do. My husband was diagnosed with PD in 2016, already stage 3. I believe it began around 2004. Nearly every morning when I wake him up, he says “Are you my nurse for the day?” Of course, he is just teasing me, but sadly, I am nurse and much more.  It is frustrating to not feel like a wife. ~Brenda R.

  • maynard

    Member
    March 22, 2022 at 2:41 pm

    I am the 85-year-old husband of an 81-year-old Parkinson’s patient. We live in our home. We are unable to employ any caregivers… no one is looking for work. I’m good at focusing on being a housekeeper, caregiver, pharmacist, etc. Just recently I realized I left an important role off my list: I am a spouse.
    Any one of those tools is worthy of full-time attention. But I think “spouse” get’s any time and attention that is leftover.

  • barbara-ernest

    Member
    March 22, 2022 at 6:41 pm

    My wife has PD for over two decades. The last several years she experienced more frequent falls often serious. I was essentially her care taker the last couple years. Even though I told her never to go up or down stairs without me, she just didn’t want the disease to control her life. She never complained about having the disease. She fell down a flight of stairs with serious injuries she could not recover from.

  • ronald-redmon

    Member
    June 29, 2022 at 11:58 am

    Greetings everyone. So glad to have found this site and this forum. I am the caregiver to my husband, 76, who was diagnosed with PD within the last couple of months. At this point, minimal symptoms (e.g., hand tremor, some balance issues, fatigue), though we suspect he has had this for a few years undetected, which seems to be a common theme. We live in our own home, fortunately we’re both retired, and have a loving and attentive son and daughter-in-law in Atlanta (3 hours away). He just started on Sinimet and is tolerating it well, thus far. My principal job right now is to get educated and prepared for whatever is coming. There is strength in community, and where there is strength there is hope. Best wishes to all of you.

  • beth-ann-chambers

    Member
    November 14, 2022 at 2:31 pm

    Hi Mary Beth My Mother has Parkinson’s diagnosed 12/2014 and I am her caregiver full time. I also was diagnosed with Parkinson’s 11/2020.

  • bugsym55yahoo-com

    Member
    November 15, 2022 at 3:24 pm

    I’m a PwP. Diagnosed in 2020. My medication includes C/L, vitamins, Paxil, Colace. Still activate including Pickleball, running and walking. I am 67 years old.

  • mysfgiants

    Member
    May 16, 2023 at 2:19 pm

    My 85 year old mother was diagnosed with a form of Parkinsonism but I have no idea which one in 2022. She has a slight tremor in her left hand and now the right but I notice she shakes when she’s stressed. I am her caretaker, she lives with my husband and I. No one in the family has ever been diagnosed with PD.

  • Grammie

    Member
    May 16, 2023 at 3:58 pm

    My 65 year old husband has Parkinson’s. He’s had it for about 10 years. Didn’t realize it the first year because he was someone who started with the restless legs and then progressed to vivid dreams. Shortly after diagnosis was Parkinson’s. He was an active surfer, tennis player, golfer etc.   First in his family to have experience with Parkinson’s.

  • julesbunny

    Member
    June 19, 2023 at 1:43 pm

    Hi, I’m the wife of my wonderful husband, he is 61, we both are actually, and he has had PD for 25 years now, YOPD. The symptoms of PD are well controlled with DBS, but speech and gait (falls) are by far his worst symptoms that have become worse in the past 2 years. Progression we feel.

    I find it awfully difficult to read sometimes and understand how husbands/wives (as above, with no prejudice) say they are now a caregiver + + + and don’t feel like a wife/husband any more. I say difficult, because I am lucky that my husband is still very independent, but it scares me to think that one day, I’m going to be saying the same thing.

    I really feel for you all, especially to be feeling this major loss in your lives. You are still their wife, their husband, you love them and they you. I honestly have no idea what I’m really asking, except I can’t fathom not feeling together as a couple, until the end. Apologies if this reads critical, its not meant to, I’m just trying to understand how this awful disease takes…and I also want to pass on that you are all saints for what you do. Funnily enough, I’ve been called that last year by a friend, to which I said no, it’s what any wife would do for her husband and vice versa. It seems I have a lot to learn still with this disease, and what may be coming down the track.
    Warm regards

  • gil-williams

    Member
    June 20, 2023 at 2:30 pm

    I am an 85 year old man who is married to a PD person. My wife was diagnosed with PD about 8 years ago and yes, the symptoms have progressed. One thing that has been challenging is until 2020 when the pandemic hit we lived half the year in Tanzania (our project there is a story for another time). We managed to spend the month of February in Tanzania and, there were moments of high stress and challenge . . . We are “off the beaten path there” and falling was always a risk. She fell 3 times and each time . . . the Tanzanians were there in seconds to help . . . it is about honoring your elders. In many ways I am the caregiver to my wife and that manifests in many ways.

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