Have you lost anyone to Parkinson’s disease?

[Donna K]

I lost my Dad to PD in 2015.  I was one of his caregiver’s after he was hospitalized because of delusions. It was an eye opener and I wish I’d paid more attention to his symptoms before he died.
I always thought Dad’s PD came from his job as an electrician. He was electrocuted so many times while I was young.  The first symptom we noticed was his chin numbness, and that was 20+ years before he had any more symptoms  The next thing I noticed was how soft his voice was and how weird he walked.  I asked him to talk to his Primary Dr. and I don’t know if he did.  A few years later, his cardiologist was the one who recognized his symptoms and referred him to neuro.  He died about 4 yrs later.

I was diagnosed with PD in 2021, but of course much earlier than he was.

[Mary Beth Skylis]

I’m so sorry for your loss, Donna. And for your diagnosis. What a terrible  combination of losses. How did you figure out that you have PD?

 

 

[Linda Skon]

My father’s mother had PD (“shaking palsy” back then) and died in the late 1950’s from pneumonia after falling in a nursing home. When my mother was diagnosed with PD in the 1980’s, we often heard that you might die “with” PD but no one dies “from” PD.  That certainly was not true for my mom who died in 2004 after about five days of no food or liquid. For more than 25 years, she did everything recommended, took multiple meds, attended a monthly PD support group, saw her neuro every 3 months, maintained strong relationships with family and friends, danced with a broom during ON times, and pulled weeds in her garden even when she had to crawl wearing knee pads because she couldn’t push her wheelchair up a grassy hill. About six weeks before she died, she suddenly developed severe dementia with hallucinations. So, it was not surprising to me to be diagnosed with PD myself in 2019 (after several years in denial). My symptoms remind me daily of my mom, and although I still feel grief, more often I feel admiration and long-overdue empathy.

[Donna K]

Hi Mary Beth, DonnaMK replying to your question on how I found out about PD diagnosis.  While at work about 5 yrs ago, I’d filled my glass and was walking to my desk, and my shirt was wet. I went back and filled it again, and the shirt was wetter. The 3rd time I watched and the right hand was shaking and the water spilling. I was sent to a movement neuro Dr, and she tested and we watched until approx 2 yrs ago, when I failed the test. I delayed starting meds, because I just didn’t want to believe it. Started med a few months later after nearly everyone begged me to.

[Sherman Paskett]

My father-in-law about 1996 one close friend about 2014, and one not-so close friend about 2021.

When you have PD you cannot avoid thinking about end of life. It becomes very real. When I get out of bed each morning I tell myself that this day is the best day of the rest of my life. It encourages me to make the most of each day and also reminds me that the next day will be just a little bit harder. My f-I-l was a serious challenge in our lives and made everything as difficult as possible. My friends, however, were both fighters yet compassionate with their caregivers. How we approach end of life is a choice and our caregivers deserve some consideration.

[Mary Beth Skylis]

Sherman, this is an interesting topic to me. While it’s really hard to have to navigate Parkinsons or see someone you love navigating it, I do think that it’s made us more intentional about our time together. I don’t know how long I’ll have my dad, so I try to maximize both our time and the quality of it.

[Sherman Paskett]

(I hope this reply goes in the right place)

Mary Beth,

Thank you for your kind response. Now, imagine just for a moment that the person you are caring for is not loved, just barely tolerated. My father-in-law was not a nice man. I will not give you the details, but I had no love for the man. My wife, Christian soul that she is, felt that she was working through some kind of penance for the abuse she suffered at his hand as a child.
We became his caregivers when my wife’s brother showed up with him on our doorstep and said, “I‘ve had him for two years, it’s your turn now.” We had him for ten years and as he declined physically and mentally his behavior became worse, to9. He was a full time project for my wife who was raising two needful teenagers, but she had to neglect them to see to his needs. Our boys suffered so she could tend to him. He pointed to the younger one one day and said, “Now that one, I don’t like him; don’t like him at all.”

My wife and I were battling depression and sleep deprivation and struggled to keep the marriage together. I kept telling my wife there had to be some alternative to keeping him in our house. Finally, she overheard me telling him exactly what I thought of him and she agreed that we needed to get him out of the house.

The story doesn’t end there. He lived a few more years and managed to torture us remotely. We would get calls from nursing homes to come and get him, he had punched a nurse. Or we had to provide someone to be in his room 24 hours a day. So we would have him in our home until we could find another bed somewhere, often for months at a time. I could tell a thousand more stories, but I have written enough to explain why I am in favor of euthanasia. If the time should ever come that I am like him, please do the honorable thing and put me out of your misery. (The wording is quite intentional.) Some people will say this is morally reprehensible. So be it. It is also morally reprehensible for an entire family to suffer to protect the life of a miserable man who is functionally incapable of caring for himself, that the medical community is Incapable of caring for, and is stealing precious time that rightly needs to be spent raising honorable children. There is a lot more to this story but I have said way too much already.

[Jeffery Hill]

I lost my father to Parkinson’s in 2005 when he was 72. It wasn’t caused directly by Parkinson’s per se, but the symptoms frustrated him to the point where he announced one day that “I can’t do this anymore” and he stopped eating and drinking.  Didn’t take long.

At the time I had no idea that I too would develop PD. However I took lessons from his experience, one of which was to exercise like your life depends on it.

[Mary Beth Skylis]

Wow, Jeffery, that sounds like a really hard thing to witness. And experience. What other lessons do you think your dad taught you?

[Donald :Lawie]

my sister died of PD complications tthree years ago. Primary cause was not taking her medications and not exercising enough. She was diagnosed a year before me – 10 years ago – and I feel guilty for not checking on her more frequently. She lived 2 1/2 hours drive away fro me and it was not possible to visit often. She was hospitallised after aserioes of fall and my daughter drove me up to see her. She was by then in a nursing home. I dixcussed hr med detils wih sister in charge who expressed hops of a recovery but myy sister died 2 nights later. I think that she was just tired of fighting it. I feel the same way sometimes but I have awife/carer who makes sure that I take my meds etc. I face each morning with hoe of a good day but …..

[Alan M]

It seems like I’m about to lose my Aunt Francis someday soon.  She has had the “falling” version of PD for the past 9 years.  She looks very rough these days.  Her daughter (my cuzzie) as her carer for the earlier phases but she has been in a care facility for the last 4 years.

[Pat in NM]

My husband has PD and I am a retired PT who spent about the last 10 years working with folks with PD in their homes. I have seen so many wonderful people lose their PD battle. I didn’t truly appreciate what interesting and full lives they lived until their funeral services.  Wish I had known them before PD. I’ve saved the memory cards of each and wish I could have done more for them.

[Barbara Ernest]

I lost my wife in July 2021. She had Parkinson’s disease for over two decades, but it was only in the last couple years that she had severe problems with falls and mobility issues. I told her to never go downstairs or upstairs by her selves without me with her With with me. One day she tried to go down while carrying something. She fell down the full flight of stairs, causing severe, physical injuries, and trauma to the head. She just didn’t want to let the disease control her life. She never complained about it although she had pains and other issues the worst part was in the effects of the disease in the last year or so.we have been married for nearly 60 years and I just miss her dearly.

 

 

 

 

 

 

 

 

 

[Mary Beth Skylis]

Barbara, I’m so sorry for your loss. It’s such an untouchable grief. And to me, it always feels incurable. But what a wonderful thing it is to love someone so much. Do you have a good support network for yourself these days?

[Karla Burkhart]

I joined rocksteady boxing in 2015 and they were only four of us in the group that time. The group has not grown to be five different gyms but the original people that I started with a very very dear and near to me. Just last week I attended the funeral for one of those people. She could beat breast cancer that Parkinson’s finally took her. It’s very disturbing to me to see people I love go from Parkinson’s. It makes me feel very helpless to know that I am on a downhill path that has no end except in depth.

[Marta]

I lost my friend this year. She was only person that I known with PD and only person who understund me for real.  We meet each other 5 years ago on DatScan procedure. Of course we notice each other in big group of very old people. We become very good friends and support to each other. She was in worst condition than I, had a lot “off” time in the last few months and became really depressed. One day her daughter phone me (I never talk with her before), I started to cry immediately, that must be some bad news. She died, just not awake one morning. I don’t know what happened.

I remember her every day. I feel so lonley withouth her. She was ony 49.

[Lucinda]

Yes, My Great-Grandpa Harry William Sanderson died from Parkinson’s Disease a couple of months before I turned 13. I was glad to have known him and to have had the opportunity to help care for him. The experience taught me patience and compassion. Those years also helped to prepare me for my own diagnosis of Parkinson’s so many years later.

[Jonathan Shipman]

i am a bit confused by this question? As far as I know or knew no one dies from Parkinson’s. You might die from complications brought on by Parkinson’s