Saturday, February 17, 2024

My Dad Died From Parkinson’s

Watching My Dad Become Helpless

Parkinson’s Disease & My Dad

It is challenging to witness the physical and mental decline of someone living with Parkinsons. It is never easy to watch a loved one struggle, and it can be especially hard to watch a once independent parent or partner become someone who needs help with even the smallest tasks. While there are ways to help manage the disease, the progression of the condition can be a difficult thing to see.

The hurtful thing for me as his wife is watching a man who was so healthy be reduced to a person who is almost helpless sometimes. My heart really does break.

Watching my dad become helpless.

Question: How Can A Vaccine For Covid Be Developed So Quickly And Why Can’t 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.

Question: When Should I Get The Vaccine If I Tested Positive For Covid

Dr. Okun: We don’t have the exact answer to that question, but we’re starting to get some clarity. If you had COVID-19 you should still be vaccinated. The Centers for Disease Control is looking at this question. We dont know how long its safe to not be vaccinated after youve recovered from COVID-19 or how long does the protection last. We are assessing whether an unvaccinated previously affected person can be with someone who’s vaccinated and for how long they may get protection from having had the actual COVID-19 virus.

We have seen people with COVID-19 infection who do not have antibodies a few months down the road. The CDC is examining this issue but in general we recommend that people with Parkinsons who had COVID-19 get vaccinated 6-8 weeks after the infection. This may change with more guidance from the CDC.

Things are evolving quickly in the field and we want to make sure that we get you as much information as we can in-real time, so be sure to frequently check for updates on the COVID-19 vaccination.

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He Just Had Another Bad Fall

From tremors to stiffness, Parkinsons can take a hard physical toll on those living with the condition. Motor symptoms like compromised balance, freezing episodes, and moving at a slow pace also lead to falls in many people with Parkinsons.

These symptoms can be troublesome to both watch and experience. While they may be hard to live with, being aware of and prepared for the motor symptoms of this disease can help you and your loved ones reduce the risk of injury.

He just had another bad fall! Getting him a walker and walking sticks!

The nights he would try to get up, he would fall because his brain forgot he had Parkinsons.

Notable Figures With Parkinsons

My Dad. 05/08/1926 to 04/27/2012. Lost is fight to ...

Although more than 10 million people worldwide live with Parkinson’s disease , the general public’s understanding of disease symptoms is often limited to what is seen in the media. Many people only know Parkinson’s as the disease that Muhammad Ali had, or Michael J. Fox has.

However, when a household name such as Ali or Fox announces their diagnosis, Parkinson’s coverage briefly spikes. While a diagnosis is upsetting, when notable figures are public about their disease, the coverage helps increase awareness and understanding, while personalizing Parkinson’s for those with no other connection.

A PD diagnosis is universally difficult to cope with, but with a platform to speak from and fans to speak to, here’s a list of notable figures that have helped shape the Parkinson’s conversation:

Read Also: Idiopathic Parkinson’s Disease Life Expectancy

My Husband Died Of Parkinsons

Every part of this disease is a struggle to accept, including the end. Although Parkinsons itself does not cause death, symptoms related to the condition can. Knowing your loved one is at risk for fatal complications like pneumonia or falls can be stressful and fear-inducing. While Parkinsons changes many years of your loved ones life, it does not diminish the love and sense of loss that follows their passing.

My husband died of Parkinsons.

My dad was 73 years old and just passed away on June 4, 2020. He had Parkinsons disease for 3 years. I miss him every day.

My mom just passed away from Parkinsons.

Thank you to everyone who openly shared their experiences with Parkinsons disease. We are grateful for every member of this community.

Days Of Parkinsons: My Father Was My Inspiration

Day 14 of 30

This is Jill Steffeys story:

My father was my inspiration for becoming a Rock Steady Boxing coach for people with Parkinsons. My father died in June 2020 at home because of Parkinsons. He was the best man in the world!

I have been a caregiver for more than 20 years for both of my parents so I have been through everything from finding caregivers to managing their home and mine to rehabilitation services to dealing with all of the things after death.

God placed caregiving in my blood for as long as I can remember. I took care of my mom when I was in seventh grade because she was in the hospital for over a month. My sister and I ran the house while she was gone. I have always enjoyed working with people who need care. I am a retired school teacher of 26 years working with special needs/alternative kids so I have seen many aspects of helping people.

Being a Rock Steady Boxing coach has given me a wonderful avenue to be a caregiver to more people than I ever imagined. Not only do I get to fight with my fighters but I also get to work with their families.

Parkinsons is not a disease for one person it involves everybody involved with them. I answer questions, give advice, and read everything I can to make my program better and more responsive to what my fighters need.

and for more stories like this, using the hashtag #30DaysofPAR, or go here to see the full series.

Read Also: 5 Signs You Ll Get Parkinson’s

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 Parkinson’s disease, his son announced on Instagram. He was 85.

“Last night, dad passed peacefully in his sleep after years of enduring the ravages of Parkinson’s,” 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 City’s 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 father’s footsteps as an actor, including his role as Iron Man in the Avengers franchise.

Caring For A Father With Parkinsons

Realizing My Dad’s Parkinson’s Disease Was Progressing

This weeks storyteller is Chris.

Chris tells the sad story of his brilliant fathers degeneration due to Parkinsons, and how the family managed his care with love and respect.

My father at 83 started to become very slow, and slightly doddery, and for him that was not normal.

He was a very smart, neat and precise man. He had been sharp and meticulous about his work as a naval historian and had written some 43 books. Now his shoulders and hands were affected to the extent where he could no longer use his computer nor continue his research. He had to stop.

His medical analysis was quite frankly poor and very slow. After many months he was finally diagnosed as having a form of Parkinsons. His mind remained intact but after about a year his struggle with moving became so pronounced that my mother, who was 83, was finding it very hard to care for him. She suffered from an arthritic spine so movement for her was also difficult. My fathers communication skills started to fall away as his movement got progressively worse and more restricted. It was heartrending to watch the degeneration of a man who was of such high intellect. He had a brilliant mind.

Come the day we collected dad and Im sure he felt it was probably some temporary respite care and he said goodbye on the doorstep to my mum who was crying.

I am not sure I would change much of what we did for my dad. I believe that love, care and attention are things that really matter most.

Recommended Reading: Are Weak Legs A Sign Of Parkinson’s

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.

Zak Talked About How Hard The Experience Was For Both Robin And His Family

“When he died by suicide, had progressed, but he was only really two years in. I don’t want to say it was a short periodit felt a lot longer than it actually wasbut it was a period for him of intense searching and frustration,” Zak said on the podcast. “From my lens, it felt so sad for me because I loved him so much as a dad, but also he was one of my best friends, and we spent so much time together. For him to confide in me and share his experience, it’s frightening, you know, and I have a lot of empathy for family members or people going through similar or the same experience because it’s just devastating.”

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Recommended Reading: Parkinson’s And Swollen Feet And Ankles

How Do We Figure Out When Enough Is Enough

Posted November 23, 2014

Somewhere around 2004 or soI no longer remember the exact yearmy father was diagnosed with Parkinson’s disease. We’d been wondering why his legs had been feeling weak, and at first had thought he might have cervical spinal stenosis . But when the tell-tale cogwheel rigidity appeared, a neurologist confirmed Parkinson’s was the cause. We weren’t too concerned as even I, with my doctor’s knowledge, considered Parkinson’s primarily a disorder of movement, and a treatable one at that. I’d had many patients with Parkinson’s whom I’d cared for over the years and all seemed to me to have maintained a fairly good quality of life right up until they died.

At first it seemed as if this would be my father’s fate as well. He continued to jog and lift weights, and every year on his birthday continued to do a number of push-ups equal to his age .

But then his memory began to falter. We all noticed it before he did, but soon he was noticing it as well. I knew that Parkinson’s disease was sometimes associated with dementiaas well as depression, anxiety, and even hallucinationsand soon it was clear to us that his cognition was being affected by the disease perhaps even more than his movement.

There doctors discovered he had an empyema . They put in a chest tube and placed him on intravenous antibiotics. It took several weeks, but eventually the infection resolved. He came back to the nursing home, mentally more alert, but physically unable to get out of bed.

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He had two car accidents within a month of each other. By the second accident, my mom and I knew something was wrong. There had just been too many little things. We started the process of trying to figure out what was wrong, which wasn’t easy, because it’s such a rare disease.

We started with his internist, who sent us to a neurologist who sent us to a neurologist who finally sent us Dr. Gregory Day at Washington University. He said, “I think I know what this is, but I have to tell you guys, it’s really bad, if it is what I think it is.” He ended up getting diagnosed with PSP. From there, you just watch your loved one deteriorate before your eyes, and it’s heart-wrenching.

He couldn’t really talk. He couldn’t really walk. He was falling. My mom had to hide her car keys so he wouldn’t find them, because he would forget that he couldn’t drive. We had to do an alarm system on all the doors on our house, so we would know if he was trying to get outside. Everything he did was unpredictable.

After a year of my mom being the sole caregiver, we ended up finding somewhere for him to live, because she just couldn’t do it. He was a big guy he was 6’3, she’s 5’2 and it wasn’t feasible anymore. And it wasn’t safe, frankly even with me having a nursing background and friends and family who really stepped up.

He was 57 when he was diagnosed and 59 when he passed away, on Jan. 1, 2019.

As told to Rheana Murray. This interview has been edited and condensed for clarity.

Recommended Reading: What Age Parkinson’s Disease

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.

It’s OK for people to be scared it’s 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 that’s 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.

Will I Die From Parkinsons Disease

Most doctors say that Parkinsons disease itself is not fatal. You die with Parkinsons disease, not from it. However, as symptoms worsen they can cause incidents that result in death. For example, in advanced cases, difficulty swallowing can cause Parkinsons patients to aspirate food into the lungs, leading to pneumonia or other pulmonary conditions. Loss of balance can cause falls that result in serious injuries or death. The seriousness of these incidents depends greatly on the patients age, overall health and disease stage.

  • Parkinsons Disease Prognosis, The Michael J. Fox Foundation For Parkinsons Research

Link to the web page quoted here.

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Find Out What’s Happening In Newarkwith Free Real

“During a movie once, my mom turned to me and said, ‘Take your dad to the bathroom.’ The life reversal was laid plain. All the years of my dad taking me to the bathroom, now I was taking him.

“Leading my dad out, he could barely walk and he seemed lost to dementia. We got to the bathroom and to a urinal. His hands were shaking so much he couldn’t undo his pants. So I leaned over and began to undo his belt, hoping no one would come in. And, of course, right then, a man burst in, walking quickly til he got to us and then I heard his feet slow to a stop. He spoke. ‘Cory Booker!’ I was mortified. ‘Is that you!?’ And then, to my relief, he began enthusiastically telling me how much he loved my work .

The Actor Died By Suicide In 2014 Aged 63

English My Dad: his Parkinson’s through my 9 year old eyes. WPC2019

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Robin Williams battle with Parkinsons

Robin Williams son Zak has opened up about his fathers Parkinsons’ misdiagnosis, his struggle with depression and anxiety, and how the entire experience led him to be diagnosed with PTSD.

In an interview with The Genius Life podcasts Max Lugavere, 38-year-old Williams spoke candidly about watching his dads frustrating illness.

The conversation was shared on what would have been the Jumanji actors 70th birthday.

Williams died by suicide in 2014, aged 63. An autopsy revealed the actor was unknowingly suffering from Lewy body dementia, an incurable brain disease. Before his death, he was being treated for Parkinsons disease.

What he was going through didnt match one to one many Parkinsons patients experiences, said Zak. It was a period for him of intense searching and frustration, its just devastating.

Both Lugavere and Williams revealed they have experienced watching a loved one struggle with Lewy body dementia in the past.

The illness causes protein deposits to develop in nerve cells in brain regions that are involved in thinking, memory, and movement , which inhibits both the central and autonomic nervous systems.

What I saw was frustration, said Williams of his dads misdiagnosis and diagnosis.

He added: Theres a range of efficacy but what I found was theyre also really hard on the mind and body, so that was hard to see.

Also Check: Anxiety And Parkinson’s Disease

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