Let’s Talk About My Complicated Relationship With Parkinson’s Disease
Ill start at the beginning: My dad was diagnosed with Parkinsons in 2005. He was only 49. I was in 7th grade. My parents actually didnt tell me at the time, or my brother who is two years older.
They opted to just tell my two oldest siblings initially. They thought we were too young, that wed be devastated so they decided theyd wait until we were a bit older or the point that eventually they couldnt hide it. I dont blame them, they were trying to protect our innocence. I probably would have done the same if I had young kids.
But, that didnt stop me from discovering it on my own. After all, Im a sneaky, snooping, little son-of-a-gun.
My sister was applying to law school. I was in middle school, and if this blog is any indication, I operated under the very false pretenses that I was an excellent writer. I had a knack for words, I thought. I likely didnt. I still don’t, really. But it didnt stop me then from writing, and it hasnt stopped me now.
Let me proofread your essay, I insisted.
I remember her vividly being like get out of here, youre what? 13? Im just going to have Mom read it over.
Ill never forget it.
He was Superman and I was a princess, or so I remember from that one picture from Halloween during my childhood. He was strong and superhuman, but then my Superman got his kryptonite my dad was diagnosed with Parkinsons Disease, it read probably in other, far more eloquent, words.
I retorted, Is this because dad has Parkinsons?
My Dad Is Suffering From Parkinsons And Dementia I Wish I Could Give Him The Gift Of Death
As I sit there in the hospital waiting for the nurses to give my father a sponge bath and change his sheets, Im thinking about how much kinder it would have been for my dad and all of us if he had died.
It probably sounds like a callous thing to say. But instead weve been losing him progressively, watching Parkinsons disease and dementia rob him of his body and mind.
I sit there with him as he asks the same confused questions over and over and his anxious tremor shakes the hospital bed. I feel numb sitting by his bedside. Then, when I leave the room to give them privacy while hes cleaned, I see a woman with a newborn baby against her chest and burst into tears.
Grief is strange.
The next day, my dad finally gets out of the hospital, which means going back to the memory care facility we moved him into a few weeks ago. Not being stuck in a hospital bed is a relief, but this is no happy occasion. We dont have those with my dad anymore.
Dad falls again the first night back at the facility. I told my friend Andy about this the following day and he said, Arent they supposed to take care of that there?
Nope, I said, He still falls. We just hope they get there quickly to help him up.
Andy lost his own mother recently to pancreatic cancer. She was lucky enough to die at home surrounded by family, but only because her family took around-the-clock care of her. Hospice nurses came in to give meds and not much else.
In That Moment I Got A Glimpse Of My Dad The Real One
The one who raised three kids and taught us how to throw a football, how to use a hammer, how to treat people. The one who, in another world, would have been leading me through the airport, reciting Civil War trivia as we walked. The one who, to an outsider, would have been just a guy.
The one who, to those who knew him, was far from just a guy.
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With Him I Had Learned To Think Several Steps Ahead I Learned To Scout Obstacles And Anticipate Problems
I learned enough to know that, with only one hand free, he’d have trouble getting his wallet out of his sweatpants, or he’d trip over his feet and tumble into the people in front of us, or he’d inadvertently shoplift this lemonade if I didn’t take it and put it back.
But still, it felt awful to say something so patronizing to my own father.
He agreed that we should get settled and we made our way over to the gate, finally coming to a stop in front of a row of roomy handicapped seating.
“Dad, you want to sit here with the bags while I go get us a drink?”
“OK, sure.”
He just stood there.
“Dad?”
He does this thing where he’s always standing. He’ll wander into a living room conversation where everyone’s sitting, and he’ll just stand in front of a seat and talk from there. You’ll ask him if he wants to sit, and he’ll bend his knees slightly but then pause, almost as if he’s forgotten he was going to sit in the middle of doing it.
The Self Is Dead: Struggling With Loss Of Identity In Parkinsons
Were by thousands of miles, which is often a struggle for both of us for me because Dad has Parkinsons disease, and for him because Im his child, and everybody knows that once youre someones child, youre always someones child. It doesnt matter that Ive been a legal adult for many years. But this isnt the first time the distance has caused us pain, and I doubt itll be the last.
A few days after his initial message, Dad sent me a series of thoughts: Is your surgeon reputable? Did your primary care physician refer you to him? Have you done a Google search to see what people have to say about him?
He is right to be concerned. He was the victim of a malpractice incident earlier in his life, and he wants better for me. A simple flick of a blade can cause a lifetime of repercussions. And with Parkinsons and ulcerative colitis, Dad has enough to worry about. Why would he want to add me to the list?
It never ceases to amaze me that he still finds enough energy to fight for my siblings and me. Whether its a big event in our lives or some type of loss, hes always there, doing what he can to keep the odds flipped in our favor. He struggles every day, but he still wants to be there for us.
Im not sure how I got so lucky. And I hope that Dad finds the same kind of support awaiting him when he faces some other type of challenge in his life. Parkinsons certainly causes plenty of them. But I think the disease has softened him to empathy in a way that nothing else has.
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Tsuang: Family 1 And Family 2
We have previously described two unrelated families. Family 1 consists of eight affected individuals across two generations. One of the affected individuals was clinically evaluated. Five affected individuals were determined to have parkinsonism four were determined to have psychosis and all eight exhibited dementia as the presenting symptom. Parkinsonian signs and symptoms in this family included cogwheel rigidity, stooped posture, and bradykinesia. Dementia symptoms included forgetfulness, word-finding difficulty, impaired judgment, poor executive function, and behavioral changes. Psychotic symptoms included visual hallucinations in two individuals, and paranoid ideation in two other individuals.
Three autopsies were performed. All autopsied individuals had dementia, parkinsonism, and psychosis. Microscopic findings in one individual demonstrated sufficient senile plaque and neurofibrillary tangle pathology to meet neuropathological criteria for AD. In this same case, alpha-synuclein-positive LBs were detected in the amygdala only. Therefore, this individual may represent a case of amygdala-predominant DLB, a subtype that has been described elsewhere and the significance of which remains unclear. The other two individuals had no significant gross findings, and the substantia nigra appeared to be well-pigmented. However, on microscopic examination, these individuals exhibited LBs in the substantia nigra and the neocortex, with only mild AD pathology .
There’s Something Unsettling About Someone Standing When You Feel Like They Should Be Sitting
“Dad, you want to just sit here for a minute while I get us a drink?”
On that, he plopped down and I positioned our bags so they’d be in his sight and reach.
“A muffin would be good, too,” he added.
“OK. I’ll see if they have muffins.”
I turned and headed back to the concession stand. I couldn’t have walked more than five or six steps before I glanced back over my shoulder at him. He was still sitting there. I don’t know what I expected to see like he was going to erupt in flames the moment he was out of my sight or something.
I got in line, and as I waited my turn, I kept looking back.
Watch him like a hawk.”
We hadn’t come this far to have him fall down and break his wrist or have our bags stolen from under his nose.
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That’s Not To Say It Had Gone Easy But At Least It Had Gone Though We Weren’t Home Yet
Not quite anyway.
When my dad came out of the bathroom, we headed to the seating area in front of our gate. As we passed a small concession stand, awkwardly pitted in the middle of the room like a prize counter at an arcade, he mumbled something about being thirsty.
“A pink lemonade sounds good,” he said. And he reached out and grabbed one from the cooler.
We had all of our bags on us. Him carrying one, me rolling the other with a duffel slung over its handle. I looked at the narrow, winding queue leading to the cashier and back down at our bulky bags as my dad slowly started to drift away from the concession stand, lemonade still in his grasp.
“Why don’t we get settled over by the gate, put our bags down?” I said. “Then I’ll come back over and get you something to drink.”
Genes Linked To Parkinsons Disease
Theres a long list of genes known to contribute to Parkinsons, and there may be many more yet to be discovered. Here are some of the main players:
SNCA: SNCA makes the protein alpha-synuclein. In brain cells of individuals with Parkinsons disease, this protein gathers in clumps called Lewy bodies. Mutations in the SNCA gene occur in early-onset Parkinsons disease.
PARK2: The PARK2 gene makes the protein parkin, which normally helps cells break down and recycle proteins.
PARK7: Mutations in this gene cause a rare form of early-onset Parkinsons disease. The PARK7 gene makes the protein DJ-1, which protects against mitochondrial stress.
PINK1: The protein made by PINK1 is a protein kinase that protects mitochondria from stress. PINK1 mutations occur in early-onset Parkinsons disease.
LRRK2: The protein made by LRRK2 is also a protein kinase. Mutations in the LRRK2 gene have been linked to late-onset Parkinsons disease.
Among inherited cases of Parkinsons, the inheritance patterns differ depending on the genes involved. If the LRRK2 or SNCA genes are involved, Parkinsons is likely inherited from just one parent. Thats called an autosomal dominant pattern, which is when you only need one copy of a gene to be altered for the disorder to happen.
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Caring For A Parkinsons Patient At Home
Youve learned more about PD, but how does that help you care for a Parkinsons patient at home?
All the research I did made me more prepared for what was going to happen to my dad, said Liz, 53, a caregiver from the Chicago area. But moving someone with Parkinsons into your house isnt something you can be all the way prepared for.
Liz cared for her dad for over six years, and a lot changed in that time. You learn how to deal with it, and what he needs from you, as well as what youre actually able to help with, she said.
Question: How Can A Vaccine For Covid Be Developed So Quickly And Why Cant The Same Dedication And Resource Allocation Happen For Parkinsons Disease
Dr. Okun: I wrote an op-ed for The Daily Beast a couple of months ago on exactly this question. Were calling for an Operation Warp Speed for Parkinsons disease just like the national program that drove the rapid COVID-19 vaccine development. The National Institutes of Health , the worlds largest funder of medical research, sequenced the genetic information for COVID-19 shortly after the first case was documented in December 2019. The institution then shared the information with pharmaceutical and biotechnology companies like Moderna to quickly develop vaccines.
Not only did the industry make some of the more old-fashioned vaccines to protect against COVID-19, but a lot of our medical researchers were also previously working on a technology called messenger RNA vaccines . They were able to use this technology to create successful COVID-19 vaccines, thanks largely to prior research on viruses supported by NIH and other funders across the globe.
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Then Something Odd Happened
Strangely however, everything changed about seven years ago, when out of the blue, he had a personality transplant. He started being nice. It was weird. He started not having an opinion. Not caring. Letting mum make decisions. This was totally out of character. My dad became chilled.
When I visited mum, rather than be rude or ignore me, hed join the conversation. He started complimenting me. This was surreal! I was used to hearing how ridiculous or inappropriate I was, but not that I looked nice wearing ex-military gear! He would normally disapprove!
He turned into a pleasant old man. The effect on his personality was dramatic and strange. I liked the sweet old man hed become.
Robert Downey Srputney Swope Filmmaker Has Died At 85
Robert Downey Sr., the acclaimed filmmaker, actor, and father of Robert Downey Jr., died Wednesday after a long battle with Parkinsons disease, his son announced on Instagram. He was 85.
Last night, dad passed peacefully in his sleep after years of enduring the ravages of Parkinsons, Downey Jr. wrote. He was a true maverick filmmaker, and remained remarkably optimistic throughout.
Born in 1936, Downey Sr. made his mark on the American film industry. He is best known for his film Putney Swope, a satirical take on New York Citys advertising industry. During his career, he directed 18 productions, including three episodes of the hit television series The Twilight Zone, according to his IMDB profile.
In 2016, Putney Swope was chosen by the Library of Congress to be included in the United States National Film Registry. Films are selected for the registry for their cultural, historical, or aesthetic significance.
Downey Sr. leaves behind his wife, Rosemary Rogers-Downey, and his children, Allyson and Robert, CBS Los Angeles reports.
Downey Jr. mentioned Rosemary in his tribute post to his father, writing, According to my stepmoms calculations, they were happily married for just over 2000 years. Rosemary Rogers-Downey, you are a saint, and our thoughts and prayers are with you.
Downey Jr. is most well known for following in his fathers footsteps as an actor, including his role as Iron Man in the Avengers franchise.
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Is Parkinsons Disease Hereditary
Family history plays a role in a small percentage of cases, but environmental factors and age also heighten the risk.
Parkinsons disease is a degenerative nerve system disorder that affects more than 10 million people worldwide, according to the Parkinsons Foundation. It is the second most common neurodegenerative disease after Alzheimers, notes the National Institute of Neurological Disorders and Stroke.
Each year, 60,000 Americans are newly diagnosed with Parkinsons. While it is more common among older adults, those as young as 18 years old can get it.
The disease is especially problematic because it is difficult to diagnose and treat. Although therapies can alleviate the symptoms, there is no known cure.
Telltale symptoms, such as tremors and problems with balance or walking, may indicate that a person has the disorder, but an absolute diagnosis can only be made through an autopsy after a patient has died, according to the American Parkinson Disease Association. Parkinsons conditions can also mimic other diseases, so misdiagnosis is common, notes the Cleveland Clinic.
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Question: My Family Refuses To Get The Vaccine What Is The Best Argument I Can Use To Try To Convince Them To Get It
Dr Okun: We can convince more people to consider the vaccine by starting out on the right foot. We have to respect each others points of view.
Its OK for people to be scared its OK to question whether the safety record is there. You should be doing that. We now know that people who are vaccinated very rarely die of COVID-19-related complications statistically close to zero. I think thats a powerful fact.
Almost everybody wants the information. If you can share the information with them and have a positive dialogue and respect their points of view, I think more people will come around to the vaccine, particularly as the safety record continues to evolve. Sharing with people that you respect their decision and that you are grateful to have a dialogue will take us farther in overcoming vaccine hesitancy than shouting and fighting.
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Will I Inherit Dementia From My Parents Is It Hereditary
If youre caring for a relative living with dementia, its natural to be concerned about whether or not you or your children will develop the disease. In reality, there are actually different kinds of dementia and most of them are not hereditary.
Read on to learn about the common types of dementia, and what the chances are for people with relatives diagnosed with dementia to develop the disease.