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Posts Tagged ‘Michael J. Fox’

Sometimes I feel I’ve got to…runaway, I’ve to…runaway..from the pain that’s hurting me.

That’s a line to an old 80s song that rolled around in my head many of my caregiving days. I literally felt a panic inside: what was I thinking, moving my mom into my home. How long is she going to live? Do I have months, years…decades? She won’t leave me alone–I can’t take a bath or have a decent conversation with my husband (much less anything else). What choice do I have? She needs me, but how am I ever going to do this day after day. What about my life, my dreams?

On and on my internal monologue hounded me. Not only did I want to run away from my mother–I wanted to run away from me~!

I started collecting fantasies. How would I run away. Where would I go?

I imagined slipping out in the middle of the night. Me and the open road, guided by the moon. I’d roll the window down and howl. Free at last!

I imagined changing my name to Flo. Living in a run down house in Key West and waitressing. I’d fish for fun, check out books from the library and become a walking mystery.

I imagined inventing an adult play-pen and decorating it with things my mother loved. That way, I could exercise, cook, or take a bath without worrying–and maybe that Ronco guy would sell it on his high energy info-mercials.

I imagined strapping my mother to a wheelchair and taking her everywhere I long to go. Mom and me at the Grand Canyon. Mom and me at the Louvre. Mom and me taking art classes in Rome. Mom and me traipsing around New York City…hey, if you can’t get rid of them, bring ’em along became my motto. We’ll become like a Where’s Waldo drawing–where will the dynamic duo go next? We’d write travel books for caregivers and their buddies.

If only my life was that exciting…and if you think I’m a bit odd, then you try living 24/7 with your mother who has Alzheimer’s–and was a hand full before that ever started!

Kidding aside, when my mom first moved in with us, I did feel like I wanted to bolt out the front door. It took a while for my brain and my body to get the hang of her being in such a close proximity. I had to learn how to not let her overshadow me at every turn. I also had to learn how to let her feel needed and appreciated. Our mother-daughter dance had to learn a few new steps.

I also had to give into my run away tendencies. If I didn’t, I knew I’d really hit the road. So I started running away–to my journal. I had to snatch and grab a few minutes here and there–but having a place to put my questions and my angst kept them from boiling over.

I had to learn to run away–to the back yard. Nature calms and heals me. Especially water. Just to slip out that back door and stand at the edge of the river, watch the Spanish moss sway in the trees, and pick up a stone to hold as I said a prayer changed everything. Yeah, I’d look back at the house and my feet felt encased in lead. How could I ever make myself go back in there? But I did.

I used to hide–in the pantry, in the linen closet, on the side of the glass front door where no one could see me. I’d slump down and just give myself a few minutes–but then, they’d find me. They’d always find me. I was a sandwich generation mom–I had my mom–and my kids and husband to deal with. Somebody always wanted to know where mom was.

I’d run away by using my biting sarcasm (mostly internally), but my quippy comebacks kept us on our toes and we’d usually wind up laughing about it.

Running away is about letting off a little steam. It’s a mini-stay-cay. You can’t actually book that plane ticket to visit Bhutan, the place that Michael J. Fox’s book, Always Looking Up says is the happiest place on earth. You can buy a Chinese gong. You can visit a Bhutan website. You can buy a table runner in that gorgeous orange the monks wear.

If you feel like running away, then do it. Figure out a way to let off a little steam. Go for a bike ride, get off your bike and pick a few wildflowers. Do a virtual vacation by visiting a few websites and take notes for a future trip. Slip out the back door, find a pebble and say a prayer. Also, consider checking out respite care. Who says you can’t have a weekend off now and then? Check your community resources, ask a family member, and give yourself a break. (I know how hard this is and I can hear your but, but’s…but if you don’t you’ll burn out!)

Feeling that urge to run away is normal. Fantasizing about it lets off a little steam. Laughing about it soothes the soul. You are already a good caregiver–and admitting that once in a while you’d sure like to step out of that role if only for a few minutes, means you’re human.

Carol D. O’Dell

Author of Mothering Mother, available in hardback or on Kindle

www.caroldodell.com

Author of Mothering Mother, available in hardback or on Kindle

www.caroldodell.com

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If you missed Michael J. Fox’s ABC special based on his book, Always Looking Up: The Adventures of an Incurable Optimist, you might want to check it out on ABC.com because it might change the way you think–about caregiving, disease, and life.

Michael J. Fox has a way of making life look easy. The hour special showed him talking with his wife (great eye contact and flirty body language), playing golf, flying to Bhutan (known as one of the happiest countries on earth), and hanging out at a dairy farm and the streets of New York. No matter where he was, he was there. The ability to be present is a gift and perhaps a talent that takes a bit of cultivating for most of us. He even “thanks” Parkinson’s for what it’s taught him. Now that’s class.

So I started thinking about the two words Michael explores: optimism and happiness.

Optimisim starts with “opt” which is latin for “to see.” It’s a perspective thing. It’s not what you see (your disease, your circumstances), it’s how you see it, how you perceive it. Princeton Wordnet says that an optimist is “a person disposed to take a favorable view of things.”

Happiness starts with “hap,” which is an old Anglo-Saxon word which means “luck or chance.” For me, that means that you can’t make happiness happen. You can’t force it–it’s like optimism in that it’s perception, and it’s a little like chasing a butterfly–you can exhaust yourself trying to chase the thing down, or you can just sit in your lawn chair and watch it flit all around you and appreciate when it’s even near you–and if it happens to land on you, well then you’re just darn lucky, blessed, whatever word that suits your beliefs.

I like that neither optimism nor happiness are concrete objects. You can’t go buy a pound of optimism and you can’t nail happiness to a wall. It’s a way of looking at things. It’s a way of holding life loose.

Like Michael, my mother’s Parkinson’s (she also had Alzheimer’s) held some ironic gifts. If anyone would have told me that I would be “on the other side” of caregiving, and I would be profoundly grateful for what I learned, for the time I had with my mother, for how the experienced changed me and taught me about life–I think I would have laughed really hard and then I would have given you a sarcastic, “Yeah….right.”  

All you can do is face each day–with its limitations and challenges–and skew your head a bit, squint your eyes, give the day a cocky smile and say, “Hey, I’ll give it a go!” With an attitude of optimism and happiness, you just might be able to squeeze a drop or two of  goodness out of even your most challenging times.

~Carol D. O’Dell, Author of Mothering Mother

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Michael J. Fox might have Parkinson’s, but Parkinson’s doesn’t “have” Michael J. Fox. His two new book titles are Lucky Man and Always Looking Up: The Adventures of an Incurable Optimist. A title says a lot about a person. It’s the summation of the book–obviously. But it’s also a commentary about their life, their journey, and what they believe about the world.

I’ve read both books, and darn, he’s such a likeable guy! Even in his youthful, arrogant, on-top-of-the-world years he was likeable. Even more so now that he’s been tempered by time, marriage, and challenges–his easiness exudes from his voice, his mannerisms, his smile, his insight and his playfulness. If there were ever a spokesperson for a disease, it’s Michael. He doesn’t make you feel sorry for him. He calls to the best in us. And that best aspires to a cure.

My mother had Parkinson’s, and perhaps of the diseases she had, she had “P.D.” the longest. I think it started when she was in her late 70s. She took it pretty well. She didn’t like to talk about it because as she put it, “I don’t want the devil to hear me.” That’s a good way to look at it, I suppose–hey, it kept her from complaining. She continued to live in her own home, drive, play the piano at church, and enjoy life even though the love of her life, my daddy was gone.

I was her right hand gal. Some people would call me her caregiver, but I’m not sure my mother would have cared for that word. I was her daughter. We were family. And this is just what you do. I stood beside her for well over a decade. She held onto my arm. Her feet shuffled. She sweated. Laughed. Made excuses. I waited. Patted her arm and learned to enjoy the weather, the birds, my own breath. It really wasn’t a bad situation for either of us once we learned to just let it happen. I think being a mom of three daughters within 4 1/2 years had taught me an immense amount of patience. I never wanted her to feel embarrased or that I couldn’t wait for her body to “click in.” Even when my head was filled with grocery lists, kid worries, and things only women can fret about, I tried not to let on.

I admired my mother’s tenacity. Her optimism. She held onto her faith and always planned for the future. In that way, my mother and Michael had something in common. He’s in his late 40s, married, has children, writes, speaks, raises money for “P.D.” and is even doing some acting–on the tv show “Rescue Me.” Even the tv shows he picks show his slightly rascally style. And what’s amazing is that great smile of his, that oh-so-likeable demeanor is still there. And it trumps Parkinson’s every time.

That’s what I take from this man. No matter what you have, don’t let it have you.

When I think of Michael J. Fox, I think first of his indominatable spirit.

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Last night, the television show Boston Legal had one profound moment relating to Alzheimer’s.  

The premise is that one of their leading characters, Denny Crane (played by William Shatner) has early Alzheimer’s. He’s a brilliant attorney who has never lost a case–and he’s part owner in firm. The other law partners are hesitant for Denny to continue to litigate. Not only is he forgetful, he sometimes does or says bizarre things. Things Alzheimer’s patients might say or do.

Great scenario because I happen to know a great law professor from Yale who lives in my community who now has Alzheimer’s. You can be homeless and live under a bridge–and have Alzheimer’s, AIDS, or cancer–or you can be the president of the United States.

At one point, Alan, Denny’s best friend is having a conversation with Jerry, another lawyer in the firm, (who suffers from Asperger’s syndrome) about what a phenomenal job Denny did in court. Jerry blurts out, “Too bad Denny’s dying from Alzheimer’s.”

Alan is shocked. Insulted. He retorts:

“Denny’s not dying from Alzheimer’s. He’s living with it.”

There’s a great distinction here.

One of the drawbacks to early diagnosis is giving up too soon.

Early detection should mean that you receive proper medication, spend time with your loved ones, and make plans to live–not die.

In the case of Alzheimer’s, the average patient lives 8-10 years, and even longer depending on the age you contract this disease. Parkinson’s, ALS, MS, and other diseases can even offer a longer lifespan. Coincidentally, the average caregiver spend 4.3 years caregiving–leaving a bit of a discrepancy here.

The message is: don’t give up too soon.

Don’t hear a diagnosis and go home, draw the curtains, curl up in a fetal position and wither away.

As a family member or caregiver, it’s a blow to hear that your loved one has a terminal illness, but you still have to get up and face each day.

Michael J. Fox says that Parkinson’s is “the disease that keeps on taking.” He’s chosen to live with his disease. He’s chosen to do this for the millions who look to him and rely on him to raise money for research, for the difference he’s already made, but I’m sure he does this even more for his wife and his children.

A recent example is Ted Kennedy’s diagnosis of a malignant brain tumor. He had a seizure and went into the hospital just last weekend. Yet today, he and his wife, Vicki went sailing. He loves sailing and the Boston Globe said he “finds renewal on the water.”

Ted Kennedy is actually teaching his family and others how to treat him. The Chicago Tribune wrote, “Kennedy’s cancer is dire, not hopeless.”

It’s proven that prayers and good thoughts can impact people’s lives clear across the country–and we can create the atmosphere and attitude around us by how we handle our own bad news.

Maya Angelou says, “We teach people how to treat us.”

Yes, it’s natural to feel kicked in the gut.

It’s natural to take to the bed, cry, get angry, lash out or pull in. Don’t beat yourself up for going through this very natural stage.

But after that, it’s time to move on.

You (or your loved one) most likely won’t die tomorrow. Or the next day.

So you take your meds, maybe get physical or occupational therapy. Change things around in your home, hire a home health aide, buy a walker or scooter or whatever else you need. Life is different. I don’t doubt that. But life can still be good.

You can still find joy–and purpose.

Sometimes our purpose is nestled in our situation. Sometimes something–or someone arises in our midst and a window opens where a door shut.

Yet, there will come a time–hopefully in the distant future when the tide turns again.

You, or your loved one may die from this disease, I can’t promise you won’t. 

If not, from something else.

We have to eventually accept that as well. Another transition. Another acceptance. Another change.

But until then, live, live, live, live, live.

~Carol D. O’Dell

Check out her book, a day-to-day, intimate and honest look at caregiving…

Mothering Mother: A Daughter’s Humorous and Heartbreaking Memoir

available on Amazon

www.mothering-mother.com

Family Advisor at www.Caring.com

Syndicated blog at www.OpentoHope.com

www.kunati.com/mothering

 

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You can’t watch someone you love struggle with a disease and not be affected.

But what can you do?

As a caregiver, family member or friend, you can’t make it go away.

Alzheimer’s and Parkinson’s are two debilitating diseases that are slow and grueling and take a toll on people’s spirits, and affects everyone around them. For some, they turn into fighters, but even fighters get tired. 

You can’t offer your bone marrow or donate a kidney–you feel helpless to help.

And yet, there’s a group of family and friends who are doing something phenomenal to raise funds and awareness to fight these two monster diseases.

It’s called:

“10 Mountains – 10 Years” – A Quest for the Cure.

 

 

One decade long, 44 ½ vertical miles high, 7 countries, 6 continents and 2 diseases.

The Regulars” an international team of climbers has begun to mount what may very well become the grandest, most physically demanding, and exciting campaign to raise awareness and funds needed to help find cures for Alzheimer’s and Parkinson’s disease.

“This years team has the most dynamic line up to date”, said team captain Vincent Roland Simone. “The team will range from inexperienced to experienced, and from 11 years old to 50 years old. In the end I honestly believe regular people will play a big part in conquering these diseases”.

In 2006 “the Regulars” began their epic on Mont Blanc (France) the highest peak in continental Europe. Collectively their route around the globe from Mont Blanc to Everest 2015 will be named a “A Trail called Hope”. Each year the expeditions will be attempted in honor of the collective 30 million family’s world wide who have been directly impacted by these diseases, the care givers who ease the struggle of those affected, and the scientists who diligently battle to find a cure. A victory in reaching these summits is symbolic of overcoming the many challenging milestones in medical research and funding needed to find the cause and a cure for Alzheimer’s disease & Parkinson’s disease.

According to the Alzheimer’s Association, “an estimated 5 million Americans have Alzheimer’s disease.” Unless a cure is found, “by 2050 the number of individuals with Alzheimer’s could range from 11.3 million to 16 million.”

None of these figures account for people affected in other countries. There is no cure.

Today more than six million people worldwide are living with Parkinson’s disease, and 40% of those people are under the age of sixty. Currently one of the youngest people diagnosed was 8 years old at the time of diagnosis. Over the course of this year 60,000 new cases will be diagnosed. There is also no cure for Parkinson’s.

The “10 Mountains – 10 Years” (a quest for the cure) project is unique in a number of other ways:

• Supporting two major high profile organizations: the

 

 

 

Alzheimer’s Association & the Michael J. Fox Foundation

• The first climbing / awareness / fund raising event to span a decade, climb more than 44-1/2 miles into the sky, endeavor to reach 10 mountain summits in 7 countries, on 6 continents, in an effort to help conquer 2 diseases.

• A yearly opportunity for people, media, corporations, scientists, and governments to revisit the topic of each disease. The 10/10 project is a look back into the past year to assess the strides made by all of the above, it is also a look ahead to goals being set in research for the coming year.

• Ultimately, it is a story of how a small group of

 

 

regular people can decide that they can make a difference – great or small – then follow through with their personal promise to make it happen.

 

This year on Independence Day

 

 

 (July 4, 2008) four of “the Regulars” returning team mates will join Eileen Colon /Bencivengo on

“A Trail Called Hope – III – Mount Hood”

Collectively she will join additional team mates from Texas, Colorado, New York, California and England on the mountain in hopes of reaching the summit and helping to raise awareness for the cures. One team mate (a retired fire fighter turned photographer) residing in Colorado suffers from Young Onset Parkinson’s and will join the Regulars on the Mount Hood summit climb in hopes of inspiring others with Parkinson’s and or Alzheimer’s to never give up on themselves.

The team for “A Trail Called Hope III – Mount Hood”, which is third in a set of ten mountain climbing expedition will be the following:

 

 

 

Team Captain:

 

 

 

Vincent Roland Simone (41) – New York.

Team:

Eileen Colon / Bencivengo (50) – New Jersey

Eric Buzzetto (27) – New York

Daniel Simone (40) – New York

Tyler Simone (11) – New York

Brett Curtis (32) – United Kingdom

Jennifer Yee (24) – California

Matthew Jimenez (21) – Texas

Troy Parker (46) – Colorado

Cy Maramangalam (28) – New Jersey

In 2007 Jennifer Yee an independent film producer and owner of Back Light Productions joined “the Regulars” team. Backlight Productions began to film a multi part film documentary in September 2007. The documentary will not only follow the efforts of “the Regulars” over the course of their decade-long mountain adventures in raising awareness and funds, but also document the progress and setbacks made in Alzheimer’s and Parkinson’s during the coming decade. The first release will focus on the events surrounding the Mount Hood Climb.

***

I recently talked with Eileen Colon, one of the newest members who’s putting on a fundraiser this Saturday, May 17th to raise funds for their upcoming climb. I wanted to know what (or who) inspired her, and why, at 50 years old is she climbing her first (of many) mountains?

Here’s our discussion:

What was your first encounter with Parkinson’s?

My first encounter with Parkinson’s Disease came when my sister-in-laws father was diagnosed with it late in his life and passed from it.
There are two wonderful friends of mine that I met through Myspace that have Young Onset Parkinson’s Disease.
I have formed a team “Jim’s Gems” for two years now and have taken them to NY for the Unity Walk. I did this in honor of my good friend Jim who has the disease. My other good friend, Ken Glowienke, from Focus on A Cure for Parkinson’s, also has YOPD. I met him for the first time last year at the Unity Walk. He flew in from Chicago to be part of my team. Our friendship is one I cherish with all of my heart. He has the most beautiful and loving wife and I share a special friendship with her also. Jim and I train in the martial arts under the same association so we are always thrown together at tournaments and special events. I cherish my friendship with him also. He was my inspiration in becoming involved in the Parkinson’s community on Myspace and for bringing Enzo to me from the Regulars.
Who all has been affected by Parkinson’s in your life and how has their struggle made you look at your own life?  My mother had Parkinson’s for close to 15 years, and so I’m quite familiar with the issues that arise. My mother always had a tenacious spirit, but I found that Parkinson’s made her even more determined to be independent for as long as possible. Is this true among those you know who struggle with PD?
I look at life very differently now. I make myself walk in there shoes. I fight for every one I know with this disease plus the ones I don’t know. I take my role as an advocate very seriously. I want to ensure my own children will not be faced with this. I posted a blog about the heart of an advocate on my Myspace page. It says it all for me.
I walk and now climb, fundraise and draw awareness for those that can’t. As long as God gives me the strength to do this, I will. And when the strength to physically do this runs out I will still advocate in other ways. I look at life as a gift. Each day that I wake up I thank God for giving me this day to continue being a good mother to my children and for still being able to advocate.
The two men I speak of have the most tenacious spirit and determination to beat this disease that I have ever seen. There are so many others that I don’t know quite as personal who also fight this fight with there heads held high. As we hope for a cure, and it seems so close, there fight becomes stronger and stronger. They are true inspirations in my life. They push me to help get them closer to a cure. They are my heroes.
Tell me about your fundraise on May 17th and what are your goals?
My fundraiser this Saturday is part of my efforts to raise funds and awareness for Alzheimer’s and Parkinson’s disease in conjunction with my team The Regulars. It’s hard to say how much I will raise. It is an Open House for my karate studio also and it will be advertised in the paper. So it depends on how many people show up over the course of the day. I have been in karate all week selling Raffle Tickets for a Chinese Auction I have going on.
How did the “Ten Mountains in Ten Years Project” get started?
Enzo Simone from Amawalk, NY divised the 10 mountains 10years project. His mother has Alzheimer’s and his father-in-law has Parkinson’s. I had the pleasure of meeting them both at the Unity Walk in April as Enzo came in to join me with my team.
The mountains:
Mount Blanc – France
Cotopaxi/Chimborazo – Ecuador
Mount Hood/Mount Shasta – USA
Aconcagua – Argentina
Kilimanjaro – Tanzania, Africa
Mount McKinley – Alaska
Mount Elbrus – Russia
Cho Oyo – Khumbu Himalaya Nepal/Tibet
Vinson Massif – Antartica
Mount Everest – Himalaya, Nepal/Tibet
How’s your training going?

My training is going well. I threw on my backpack for the first time on Mother’s Day and went for a hike. It was a challenge but I eventually got a feel for it. I train almost every day. Six days a week but now I am training everyday.
Can anyone join in at any time?
Anyone can jump on board at any time to be part of the Regulars Street Team. However, the climbs are planned and you either receive an invitation from Enzo or you send him a message saying you would like to join one of his climbs.
I received “The Call” on Myspace because we were friends and he was impressed by my advocacy work on my other causes. I accepted and my journey began.
How has this changed your life already?
I challenge my body on a daily basis. I was an athlete from the time I was in third grade. When I married at 22 and had my first son, my atheticism slowed down. Occassionally exercising. Life dictated other things and I had three more children and never had time. When myone son joined karate it sparked my interest. I eventually signed on and have been training in the martial arts for over eight years. I am a second degree black belt. Testing is grueling so a lot of preparation goes into getting to that point. I have walked 60 miles in three days for Breast Cancer, two years in a row. When Enzo asked to join his team I doubted myself for a second or two and then went in head first to get ready.
It is very challenging to train everyday and still be mom and run a household. I feel my boys are inspired by me. They see there mom going out there and proving at my age, 50, anything is possible. And it is. So I look at my boys and I step up to the plate and do this for them.
***
I have to say, I am impressed and humbled by this small band of “regular people” and their devotion to those they love and their fight against the diseases that have so deeply effected their lives and the lives of those they love. This is love in action.
Anyone out there who feels stuck in their own life, who is also affected by this disease–either as a caregiver, friend, or person struggling with this disease, I hope you’ll consider contributing to this cause–and cure.
We all long to be a part of something that makes a difference, and Alzheimer’s and Parkinson’s take so much control from our lives and our bodies. By finding a way to give–or help spread this message (please feel free to cut and paste and send this blog to anyone and everyone), you’ll get a little bit of control back. You’ll feel that you contributed your grain of sand–and each grain helps tip that scale.
As a small added incentive, if you do happen to purchase my book, Mothering Mother: either on Amazon, Barnes & Noble.com, Target.com, or order it from your local bookstores, between now and July 4th, email me at writecarol@comcast.net to say you’ve done so, and I’ll donate two dollars per book to this cause.
Mothering Mother was written in “real time” during the last three years of my mother’s life. It tells the truth about caregiving and family life. It doesn’t just focus on the bleakness of the situation, but also incorprates the hilarious moments, the mother-daughter fights, the contempletive thoughts of life, and the nitty-gritty details that often get glossed over. I wrote it because I felt so alone and isolated. I needed something for my soul, my intellect, my creativity–something that incorporated what Parkinson’s and Alzheimer’s does to relationships and how you see yourself. I hope it touches it lives of many who find themselves on a similar journey.
My mother suffered with Parkinson’s for 15 years–and I became her companion, I stood in the doorway as she trembled, as she tried so very hard to will her body to move.
During the last three years of her life, she moved in with my family and me, and then she developed Alzheimer’s (I suspect it was there before and I was too much in denial and exhaustion to recognize it). I know too well what these disease does to your life, your head, your heart, your faith, and your spirit.
None of us could make it without our support.
I hope you’ll find a way to spread the word, give, and cheer on this courageous team.
available on Amazon or request it at your favorite bookstore
Family Advisor at www.Caring.com

Syndicated Blog at www.OpentoHope.com

 

For further information please visit the Regulars website:

 

 

or http://www.myspace.com/10mountains10years or

http://10mountains10years.blogspot.com/

For the Michael J. Fox Foundations for Parkinson’s Research.

P.O. Box 4777 New York, NY 10163

(212) 509-0995 ext. 204

 

http://www.michaeljfox.org

 

 

and for Team Fox visit www.TeamFox.org

Donations to the Alzheimer’s Association & the Michael J. Fox Foundation in honor of the

Regulars “10 Mountains – 10 Years (A Quest for the Cure)” project:

http://www.theRegulars.org

Once on the Regulars Website please click the page entitled “Donate Toward Research”

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