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

[Mary Beth Skylis]

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?

[Marla Klein]

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.

[Joel]

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]

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]

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]

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]

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]

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]

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]

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.

[Bill]

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.

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