Showing posts with label Michael J. Fox Foundation. Show all posts
Showing posts with label Michael J. Fox Foundation. Show all posts
Wednesday, March 21, 2018
Small Town Advocate for Big Time Issue
Small Town Advocate for Big Time Issue
Sharing the above article that published on Health Union's ParkinsonsDisease.net while Violet and I are attending the Parkinson's Policy Forum in Washington, DC. Today, March 21st, is Parkinson's Advocacy Day where 300 people from across the country will contact our Members in Congress to fund critical research for NIH and DOD.
More cool news to come!
Monday, March 12, 2018
Parkinson's Advocacy is All in the Family
As Dannypoo and I prepare to return to the Parkinson's Policy Forum for Advocacy Day March 21st with Violet and Levi, I am excited to share this feature on the Michael J. Fox Foundation's blog:
Advocacy Is All in the Family
Advocacy Is All in the Family
Wednesday, August 20, 2014
I Saw Robin Williams at Church This Sunday
Maybe someone should have warned Pastor Stan. He IS new after all! Barely on assignment here in rural West Virginia for a month and Robin Williams shows up at his service. As our contemporary band closes their set of songs for the beginning of church, the congregation closes their eyes and lowers their heads for the morning prayer. As I join in prayer, I find myself lowering my head. Please don't tell the new pastor, but my eyes were open and, well honestly, I wasn't listening to the prayer. Not at all.
As I stared at the floor with a heavy heart from the week's happenings, still confused about the suicide of the world-loved comedian Robin Williams, rolling out from under the chair next to me came something unexpected. Ours is a service that happens in a bit of an unconventional setting. My family was sitting house center under a basketball net. Scattered around is evidence of a vibrant youth community. Well, it's a bit of a mess; but it feels like home.
So as I sat there, quietly (which is really hard for me), praying... I notice something small rolling across the floor and stops just shy of my left sneaker. It is a little red ball.
As I bend down to pick it up and hold it in my hand, from this little red ball emerges a blanket of comfort. And yes, even at church (and during prayer), I am blessed with a smile across my face.
It really is a good thing no one was looking. Because just then I looked up to God with Robin's red ball in my hand as a small tear of relief rolled out. "There you are." I saw Robin Williams at church this morning.
Before you find me delusional for the blog title "I Saw Robin Williams at Church This Sunday!", please bear with me. Dan (my hotthubby) may argue that I do manage to miss many major news events, the recent alarming press of the suicide of world beloved actor Robin Williams did, indeed and sadly, not miss my radar.
How could it?
Every reporter and columnist across the globe shared Robin's sad and shocking story of suicide. After reading everything from Matt Walsh to listening to facebook tributes, I struggled with the confusion and wonder too, just like the rest of you. My Netflix que now has every Robin Williams movie I could find. I just did not want to let him go.
Although it is hard to imagine, my heart was even heavier two days after Robin's death when it was released that he was recently diagnosed with Parkinson's Disease.
Parkinson's Disease, or "PD", is a chronic and progressive movement disorder for which there is no cure. Many of the visible symptoms include tremor, slowness, stiffness, and impaired balance issues. Additionally, the non-motor issues that arise from the brain's inability to produce a chemical called dopamine, can cause a patients loss of smell, sleep disorders, as well as mood disorders. Finally, depression is an invisible element of this already debilitating disease on top of it all; yet, quite prevalent for dear Robin.
Depression. I found myself rather irritated that people seemed to almost justify Robin's suicide with the news of his recent diagnosis of Parkinson's. Or, maybe they were just holding on to an answer, I don't know. But for me, I was pissed at the seemingly "now his suicide makes sense". No... suicide never makes sense, but you know what? Neither does Parkinson's Disease! Pardon my bluntness, but I've said it before, Parkinson's "sucks." You see, although you can not see a visible tremor, PD hurts in other ways. I guess it was the invisible symptoms Robin suffered that took us all by surprise. Even David Letterman said, "Beyond being a very talented man and a good friend and a gentleman, I am sorry I-like everybody else-had no idea that the man was in pain and that the man was suffering."
But, then I actually discovered my fear. And this is really hard to share with you. For you see, Susan Schneider (Robin's wife) and I share something in common as well as Diane Rehm, of NPR, who recently lost her husband after a long battle with PD. In fact, her husband John didn't want to live another day. Our husbands all have Parkinson's.
Suddenly, I was scared. Depression comes as a partner to Parkinson's just as I am married to it as well. If these famous women suffered the loss of their loved husbands, what does that mean for me? Although, my husband is not depressed, he remains involved and participates with depression research through the Michael J. Fox Foundation at Johns Hopkins Hospital in Baltimore. Would he ever reach this point in his disease? God, I hope not.
And if so, where would he spend eternity? Are there people in heaven who took their own lives by suicide? Not to sound crazy, but I was worried where Robin Williams was spending eternity. How could a man, who played Patch Adams (the humorous and whimical physician) with such talent to make me laugh one second and cry the next spend eternity in any place other than the loving hands of his creator, God?
Is suicide an "unforgivable sin"? No... at least I don't believe it to be. After investigating this extensively, I stumbled across a site with none other than that red ball again (ask.com). What does the Bible say? "The Bible tells us that at the moment of salvation, a believer's sins are forgiven (John 3:16; 10:28). When we become a child of God, all of our sins, even those committed after salvation, are no longer held against us."
It goes on to say that in Ephesians 2:8,
Then I saw the red ball roll next to me and I knew exactly where Robin was.
As I stared at the floor with a heavy heart from the week's happenings, still confused about the suicide of the world-loved comedian Robin Williams, rolling out from under the chair next to me came something unexpected. Ours is a service that happens in a bit of an unconventional setting. My family was sitting house center under a basketball net. Scattered around is evidence of a vibrant youth community. Well, it's a bit of a mess; but it feels like home.
So as I sat there, quietly (which is really hard for me), praying... I notice something small rolling across the floor and stops just shy of my left sneaker. It is a little red ball.
As I bend down to pick it up and hold it in my hand, from this little red ball emerges a blanket of comfort. And yes, even at church (and during prayer), I am blessed with a smile across my face.
It really is a good thing no one was looking. Because just then I looked up to God with Robin's red ball in my hand as a small tear of relief rolled out. "There you are." I saw Robin Williams at church this morning.
Before you find me delusional for the blog title "I Saw Robin Williams at Church This Sunday!", please bear with me. Dan (my hotthubby) may argue that I do manage to miss many major news events, the recent alarming press of the suicide of world beloved actor Robin Williams did, indeed and sadly, not miss my radar.
How could it?
Every reporter and columnist across the globe shared Robin's sad and shocking story of suicide. After reading everything from Matt Walsh to listening to facebook tributes, I struggled with the confusion and wonder too, just like the rest of you. My Netflix que now has every Robin Williams movie I could find. I just did not want to let him go.
Although it is hard to imagine, my heart was even heavier two days after Robin's death when it was released that he was recently diagnosed with Parkinson's Disease.
Parkinson's Disease, or "PD", is a chronic and progressive movement disorder for which there is no cure. Many of the visible symptoms include tremor, slowness, stiffness, and impaired balance issues. Additionally, the non-motor issues that arise from the brain's inability to produce a chemical called dopamine, can cause a patients loss of smell, sleep disorders, as well as mood disorders. Finally, depression is an invisible element of this already debilitating disease on top of it all; yet, quite prevalent for dear Robin.
Depression. I found myself rather irritated that people seemed to almost justify Robin's suicide with the news of his recent diagnosis of Parkinson's. Or, maybe they were just holding on to an answer, I don't know. But for me, I was pissed at the seemingly "now his suicide makes sense". No... suicide never makes sense, but you know what? Neither does Parkinson's Disease! Pardon my bluntness, but I've said it before, Parkinson's "sucks." You see, although you can not see a visible tremor, PD hurts in other ways. I guess it was the invisible symptoms Robin suffered that took us all by surprise. Even David Letterman said, "Beyond being a very talented man and a good friend and a gentleman, I am sorry I-like everybody else-had no idea that the man was in pain and that the man was suffering."
But, then I actually discovered my fear. And this is really hard to share with you. For you see, Susan Schneider (Robin's wife) and I share something in common as well as Diane Rehm, of NPR, who recently lost her husband after a long battle with PD. In fact, her husband John didn't want to live another day. Our husbands all have Parkinson's.
Suddenly, I was scared. Depression comes as a partner to Parkinson's just as I am married to it as well. If these famous women suffered the loss of their loved husbands, what does that mean for me? Although, my husband is not depressed, he remains involved and participates with depression research through the Michael J. Fox Foundation at Johns Hopkins Hospital in Baltimore. Would he ever reach this point in his disease? God, I hope not.
And if so, where would he spend eternity? Are there people in heaven who took their own lives by suicide? Not to sound crazy, but I was worried where Robin Williams was spending eternity. How could a man, who played Patch Adams (the humorous and whimical physician) with such talent to make me laugh one second and cry the next spend eternity in any place other than the loving hands of his creator, God?
Is suicide an "unforgivable sin"? No... at least I don't believe it to be. After investigating this extensively, I stumbled across a site with none other than that red ball again (ask.com). What does the Bible say? "The Bible tells us that at the moment of salvation, a believer's sins are forgiven (John 3:16; 10:28). When we become a child of God, all of our sins, even those committed after salvation, are no longer held against us."
It goes on to say that in Ephesians 2:8,
"God saved you by his grace when you believed.
And you can't take credit for this; it is a gift from God."
So, we are saved by God's grace, not by our own good deeds. In the same way that our good works don't save us, our bad ones, or sins, cannot keep us from salvation" when we believe. Robin believed, and so does Dan.Then I saw the red ball roll next to me and I knew exactly where Robin was.
Wednesday, August 21, 2013
How a Bracelet Helps Parkinson's Disease Symptoms When Meds Don't
Diagnosis of Parkinson's Disease depends "upon the presence of one or more of the four most common motor symptoms of the disease." These primary motor symptoms include a resting tremor, brandykinesia, rigidity, and postural instability. Medications to treat these symptoms involve a dopamine replacement therapy with levodopa/carbidopa. In addition to all the medical treatments, even DBS (Deep Brain Stimulation), I recently was introduced to a unique and simple little "thing"... yes, it's a bracelet!
Although this bright paracord bracelet doesn't have the capabilities to generate dopamine, it does something equally as important: It sparks a candle in your spirit that will light up the difficult days when Parkinson's Disease seems to get the best of you. It let's me know that there is someone out there that keeps studying this crazy stinking illness. The orange Survival Paracord Parkinson's Bracelet stands for this:
Hope.
Hope for people with Parkinson's. Hope for organizations like the Michael J. Fox Foundation and the National Parkinson's Foundation that raise money for research; hope for the caring specialists, neurologists, and nurses that treat patients; hope for caregivers to better understand; and... finally, as I see it, hope to seek God's grace during the most difficult struggles as the symptoms progress.
For those days, and there may be many, when the meds just don't seem to do the trick, this little Parkinson's Bracelet symbolizes my prayer for God to wrap himself around this awful illness. With the MJF Foundation's signature "orange" color, I found the white paracord represents all that ties us together in the Parkinson's (or any) community: a God that offers us hope in the darkest days, woven around the orange.
Delighted to open my mail yesterday to see a package from Sandy at Jewels for Hope makes me realize just how much I have grown to love the cool "Parkie Pals" I have met by sharing stories with you here on "Excuse me, can I tell you something?" From the artist Shasha in Wales, Fiona in Ireland, to dear Linda in Florida and writer, Daniel in Minnesota, living with Parkinson's Disease isn't so crazy when I can fire up the laptop and find someone who understands at my fingertips...
and wrapped around my skinny ole freckled wrist!
You know what? I may never meet Michael J. Fox, Muhammad Ali, or Diane Rehm (I just LOVE her hair!), but this 48-year-old-grey-haired-PD bloggin'-hott-mama-of-four is grateful to all I've met and shared stories online. Thank you all for inviting me on your computers for a short time to share my
hope. "Where then is my hope? Who can see any hope for me?" Job 17:15
I now see hope on my wrist as I wear my new bracelet! Thank you Sandy!
Although this bright paracord bracelet doesn't have the capabilities to generate dopamine, it does something equally as important: It sparks a candle in your spirit that will light up the difficult days when Parkinson's Disease seems to get the best of you. It let's me know that there is someone out there that keeps studying this crazy stinking illness. The orange Survival Paracord Parkinson's Bracelet stands for this:Hope.
Hope for people with Parkinson's. Hope for organizations like the Michael J. Fox Foundation and the National Parkinson's Foundation that raise money for research; hope for the caring specialists, neurologists, and nurses that treat patients; hope for caregivers to better understand; and... finally, as I see it, hope to seek God's grace during the most difficult struggles as the symptoms progress.
For those days, and there may be many, when the meds just don't seem to do the trick, this little Parkinson's Bracelet symbolizes my prayer for God to wrap himself around this awful illness. With the MJF Foundation's signature "orange" color, I found the white paracord represents all that ties us together in the Parkinson's (or any) community: a God that offers us hope in the darkest days, woven around the orange.
Delighted to open my mail yesterday to see a package from Sandy at Jewels for Hope makes me realize just how much I have grown to love the cool "Parkie Pals" I have met by sharing stories with you here on "Excuse me, can I tell you something?" From the artist Shasha in Wales, Fiona in Ireland, to dear Linda in Florida and writer, Daniel in Minnesota, living with Parkinson's Disease isn't so crazy when I can fire up the laptop and find someone who understands at my fingertips...
and wrapped around my skinny ole freckled wrist!
You know what? I may never meet Michael J. Fox, Muhammad Ali, or Diane Rehm (I just LOVE her hair!), but this 48-year-old-grey-haired-PD bloggin'-hott-mama-of-four is grateful to all I've met and shared stories online. Thank you all for inviting me on your computers for a short time to share my
hope. "Where then is my hope? Who can see any hope for me?" Job 17:15
I now see hope on my wrist as I wear my new bracelet! Thank you Sandy!
Monday, April 29, 2013
Meet Team McGeoBeeHottBell!
Did I tell you 14?! Here we are following the race at Widmeyer Park on a beautiful Spring morning. Little did I know of some last minute entries... to include our honorary Hott for the day, Tori Reed, and grandparents, Bobbie (77) and Mary McBee! Also pictured here are Brian George, Brandon Bell, Dan Hott, Isaac Hott, Crystal McBee, Ashley Bell, Caity Hott, Angie Hott (me), Levi Hott, Violet Hott, and Nahtaniel Bell (4).
Results? Well, let's just say we all finished. Violet (13) did both races, coming in second in age under 25 and third female overall for the 5K. She and Caity were the first in for the 2 mile "walk", followed by Dan with Levi (8) and another friend, Pierce. Me?... well, let's just say I finally managed to catch up with Grandma! LOL!
Chalk this up to one of my favorite days...EVer!
Wednesday, April 10, 2013
See What Happens When You Ask For Prayer!
So... what happens when a 47-year-old-grey-haired-hott-mama-of-four asks her book club to pray for Parkinson's for April's "Parkinson's Awareness Month"? Well, sit back and just let me tell you a thing... or two!
To begin with, I have to admit that proposing this question in front of even a small number of mom friends really, and I mean really made me nervous. So nervous, in fact, that I almost chickened out. That's right! My knees felt a little strange, and my stomach began to churn just before I looked in my bag where the green rubber bracelets were that I had intended to give to each to pray for PD. I thought to myself: "Nah... this is really a dumb idea! I'll sound stupid! Everyone will think I'm a whiner... or, they'll see how weak I really am if I ask them to help pray for PD. No. I'm not doing this. What.was.I.thinking?" I considered a quick trip to the bathroom to throw up.
Isn't it crazy how that ole Satan can get in the way?! And he nearly did. In fact, if it weren't for Gretchen sharing how she almost gave up on going to a Good Friday service at her office for what sounded like peer pressure, I really think that I would have given up too.
But I sucked it up and with theses "chickenhands" of mine, spoke up, and asked my mom friends to "pray for Parkinson's". And, guess what happened?
They did! And so did YOU! And, wow did things start to happen! The.very.next.day I saw a super oooober important press release about funding for brain research with the National Institute of Health on The Michael J. Fox Foundation. Later, at the grocery store, I met a mom that is making grey ribbons for April 13th "wear grey" day. (Thanks Susan!) Go God!
There 'ya go Satan! Take that! Can these moms pray or what!
I can't thank you all enough at book club as well as those of you here online that have been "praying for Parkinson's!" It really does make a difference! Guess ya just gotta ask.
Isn't it crazy how that ole Satan can get in the way?! And he nearly did. In fact, if it weren't for Gretchen sharing how she almost gave up on going to a Good Friday service at her office for what sounded like peer pressure, I really think that I would have given up too.
But I sucked it up and with theses "chickenhands" of mine, spoke up, and asked my mom friends to "pray for Parkinson's". And, guess what happened?
They did! And so did YOU! And, wow did things start to happen! The.very.next.day I saw a super oooober important press release about funding for brain research with the National Institute of Health on The Michael J. Fox Foundation. Later, at the grocery store, I met a mom that is making grey ribbons for April 13th "wear grey" day. (Thanks Susan!) Go God!
There 'ya go Satan! Take that! Can these moms pray or what!
I can't thank you all enough at book club as well as those of you here online that have been "praying for Parkinson's!" It really does make a difference! Guess ya just gotta ask.
"And whatever you ask in prayer, you will receive, if you have faith." Matthew 21:22
Thursday, November 15, 2012
Clicking "Like" Will Send $5 to Help Find a Cure for Parkinson's Disease
It's easy! The Michael J. Fox Foundation has partnered with UCB in a program called "Tell Us YOUR Story" on Facebook. So, forever the story teller, I posted about our experiences living with this crazy illness; the good and bad!"At UCB our sense of purpose is to help people suffering from severe central nervous system or immunological disorders lead normal, everyday lives. Our ambition is to offer them innovative new medicines and ground-breaking solutions that go beyond the drug. We are committed to enabling cutting-edge scientific research that is driven by the patients' needs. "
And what a better way to understand patients needs than to ask them to tell their stories! That's just cool in my book! Happy to oblidge, I submitted a post in an effort to generate both awareness AND, get this.... $5 for each "like" or "share" on facebook. Already, our story "Standing Tall" has raised $55! YOUR click could help in leading to a cure to Parkinson's Disease and making my hott-hubby Dan more comfortable as we live with this stinking neurological crazy illness.
It's legit! And FYI, Dan participates in research efforts at Johns Hopkins Hospital that is sponsored by the Michael J. Fox Foundation. So, please support this! And do tell everyone you know; together, we can raise $60,000 just by clicking the "like" or "share" button on my post.
If you roll your cursor over the sentence below, it will take you directly to the site. Thanks for helping.
Go to this link and "like" or "share" our PD story and UCB will donate $5 to research with the Michael J. Fox Foundation!!!!
Sunday, April 22, 2012
Hotts Wearing Grey for PD Awareness Day!
Check us out. Send me your picture. I'll send it to the Parkinson's Foundation.
"Cast all your anxiety on him because he cares for YOU!" 1 Peter 5:7
Thursday, April 19, 2012
Wearing Grey on Saturday for Parkinson's Awareness!!
I have seen many declarations on the news lately for the month of April. The many meaningful causes attempting to generate awareness for worthy efforts include the following list for April:
April is:
Autism Awareness Month,
Distracted Driver Awareness Month,
STD Awareness Month,
Sexual Assault Awareness Month,
National Sarciodosis Awareness Month,
Alcohol Awareness Month,
Esophageal Cancer Awareness Month,
Child Abuse Awareness Month,
IBS (Irritated Bowel Syndrome) Awareness Month,
Oral Cancer Awareness Month,
National Stress Awareness Month,
Organ Donor Awareness Month,
Community College Awareness Month,
Oil Speculation Awareness Month,
To name a few......
Holy Cow! This list came up from a simple google search on Yahoo. Did you know there were so many organizations holding events this month to generate awareness? This was news to me.
However, I have been following the efforts of the Parkinson's Disease and Michael J. Fox Foundations. They have been doing some great things to bring awareness to this crazy chronic illness.
You see, my "hott-hubby" Dan has Parkinson's Disease. At 49 years old with a young family of four, he was diagnosed with this debilitating illness that effects his mobility, among other things. With two young boys at home (now they are 7 and 8 years old), living with Parkinson's can be challenge.
But aside from the physical demands of PD, we at the Hott House have chosen to find it's blessings. So, for Parkinson's Awareness Month, this wife of a PD patient, mom of a PD family, caregiver in a PD home wants to say "thanks". Because when Parkinson's joined our family, I learned to hear better and experience the blessings in the smallest moments, to appreciate how healthy we are this very minute, because, as I learn more and witness advanced stages of this stinking disease, PD has taught me to celebrate right now!
It's like God tapped me on the shoulder and whispered in my ear "Excuse me, can I tell you something?" I'm here. And we can live with this!
Wear grey this Saturday, April 21st, to express your support of Parkinson's research.
I am.
"I can do all things through him who strengthens me." Philippians 4:13
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