Shake, Rattle and Roll

Maya Pinpoints My Perspective on Parkinson’s

Maya Ellis is a 12 year old middle school student in Boulder, Colorado. She chose to study Parkinson’s Disease for her class project because her great uncle has it, and she wanted to know more about it. In her free time, she studies for her Bat Mitzvah, plays soccer and the piano.

1. What is it like to live with Parkinson’s disease (PD)?

Life with PD is unpredictable. I never know for sure when and if the medication will be working. Life with PD can be embarrassing, particularly with difficulty walking and talking. Feelings of isolation and being different often set in.

2. Can PD be misdiagnosed?

PD is frequently misdiagnosed. My neurologist had to rule out Essential Tremor, brain tumor, Lou Gehrig’s disease and Wilson’s disease before considering PD. A Movement Disorder Specialist (MDS) is a specialist within neurology who is frequently called upon to diagnose PD.

3. What treatments are there for PD?

The traditional treatments for PD are combinations of medications and/or surgery. The gold standard of treatment is the medication, Sinemet. However, over time Sinemet can cause dyskinesia (e.g., those involuntary movements of Michael J. Fox). The most effective surgical treatment to date is Deep Brain Stimulation (DBS). View a clip of Deborah Fryer’s award-winning film, Shaken: Journey into the Mind of a Parkinson’s Patient, at:
http://www.youtube.com/watch?v=QFtgV1vqwiE

I and many others with PD often experience some temporary relief of symptoms through yoga, dance and other forms of exercise as well as massage and acupuncture.

4. What are the side effects of the treatment?

The side effects of taking Sinemet over time include dyskinesia.

The possible adverse effects of DBS include:
Difficulties with speech
Confusion and other cognitive problems
Infection
Weight gain

See more about adverse effects of DBS at:
http://katekelsall.typepad.com/my_weblog/2008/03/adverse-events.html

5. What cause the lack of dopamine?

No one knows for sure, but it’s probably a combination of genetic and environmental factors.

6. How long does the average person live after they are diagnosed?

This is a topic that most of us with PD don’t want to talk or think about. I’ve seen people in their eighties who die several years after being diagnosed with PD (e.g., my mother-in-law) while I know three persons living with PD who were diagnosed 33 years ago.

For more information, see:

http://katekelsall.typepad.com/my_weblog/2007/10/stages-and-prog.html

7. Are there any common misperceptions about PD?

The primary misperceptions about PD include:

• It is an old person’s disease (when 15% of those with PD were diagnosed when they are less than 50-year old). I know a 21-year old with PD.

• The prevalence of PD (it is estimated that 1.5 million people in the US and 6 million people worldwide have PD).

8. What are the most important things to know about PD?

• The primary four symptoms include: tremor, stiffness of muscles, slowness of movement and impaired balance.

• The onset of PD, which is typically subtle and gradual, is most often unilateral, with tremors the most common symptom. However, many people with PD have no tremor.

• There is currently no cure. It is chronic and progressive.

• The symptoms of PD are different in each individual.

• PD will affect you, your family or friends in your lifetime.

9. What interested you in studying PD?

I wouldn’t be studying PD if I personally didn’t have it.

10. Other facts about PD?

• At time of diagnosis of PD, 80% of dopamine cells are damaged, dead or degenerated.

• April is National PD Awareness Month. Please help by spreading the word.

Caleb's Interviews Kate about Parkinson's from the Insider's Perspective

Check out my interview with Caleb, owner and manager of a blog about Parkinson’s Disease at: www.myparkinsonsinformation.com. Thank you, Caleb, for your thoughtful questions I appreciated the opportunity to be interviewed by you. I am inspired by your mission to close the gap of information and understanding between professionals and the Parkinson’s community through your gift of writing,

Bridging the Gap

The following is an email interview with Caleb Manscill, owner and manager of a blog about Parkinson’s disease at: www.myparkinsonsinformation.com.

Kate: Since you don’t have Parkinson’s disease yourself, why have you chosen this area to focus your efforts?

Caleb: I’ve decided to focus on Parkinson’s disease (PD) for two reasons. First, the information regarding PD on the internet is difficult to understand, find, and sort through. I helped create www.myparkinsonsinformation.com so that people who are affected by PD have a site they can depend on for current research and other important information.

What’s the first thing people do when they find out they or someone close to them has a serious disease? They get on the internet and type the disease into a search engine and come up with millions of sites. I think that could be a little frustrating wading through all of that information. Our goal with our site is to create one central place that people affected by PD can go to learn about current and past research regarding PD.

The second reason I have focused on PD is because people in my family, particularly my grandma, have been deeply affected by neurological diseases. They haven’t had a great internet site they can turn to in order to understand the disease that may influence the rest of their lives. I remember the instant stress that seemed to come to my dad as he learned of my grandma’s condition and what kind of impact that had on him. Slowly he was able to push the stress aside as he learned more and more about her neurological disease. My hope is that www.myparkinsonsinformation.com can become a constant source of information to help people cope with PD.

Kate: How have you become knowledgeable about PD? How have you become "very tuned in to research, movements, and the day to day rigors that PD brings.”

Caleb: I have become knowledgeable about PD by studying articles, reports, and journals about PD and other neurological diseases. If I am writing or managing a site that has to do with PD, then I want to make sure I am up to date and as knowledgeable and informed about PD as any PhD or MD. I believe my gift of writing can help close the gap of information and understanding between professionals and PD sufferers. I know that it’s a tall order for a young person finishing college at Brigham Young University in Provo, Utah.

Kate: What prompted you to become the owner and manager of this PD blog? What do hope to achieve?

Caleb: The opportunity to manage the site was given to me by the website designer. When the designer mentioned the focus of the site to me, I became excited because I saw the opportunity to be a part of something that was of great need to many people. Since I began last summer, it has been exciting to see the traffic that has come to our site. In years to come I hope to be one of the premier sites to visit for PD. I understand that it will take some time and persistence but we have a specific plan and vision of how to get there.

Kate: Who do you admire the most in the PD movement?

Caleb: The thing I admire most about a many PD sufferers is their hope and ambition. I have always wanted to associate myself with people that are ambitious and hard-working, whether they are involved in running, sports, school, or simple day to day matters. I have found it discouraging that some people settle for mediocrity and sit back and let their circumstances take control of their lives.

Since I’ve been involved with the PD movement, I’ve been astounded at the drive and determination of PD sufferers and even researchers. I’m not just talking about Michael J. Fox, but the people that get up every day and think “I’m going to do my best today and try to accomplish something.”

As I’ve associated myself with those suffering from PD, I have learned volumes, mostly about myself and what I truly want in life. I think the thing that has the biggest impact on me is the unity and love that exists in the PD community. Everyone seems to be pulling for each other, and everyone seems to want the very best regardless of how bad it can get some days. There is a lot of determination exhibited by those with PD that others have a difficult time understanding.

I am grateful for my associations in the PD world. I look forward to giving back to them, starting with my blog at www.myparkinsonsinformation.com.

I'm Interviewed by the PD Warrior

Joe Ralph, creator and author of the blog, Day By Day Adventures of the PD Warrior, published this email interview of me in September 2007.

Joe: Parkinson's Disease, like everything else in life, has varying effects on people. Most people automatically think of tremors when they think of Parkinson's, but the "PD Shake" as I like to call it, is not the only symptom of the disease. In fact, some people with PD don't actually show any signs of tremor until they are in very advanced stages of the disease. What was the first noticeable symptom of Parkinson's Disease that you experienced, the one that prompted you to seek medical attention to find out what was going on?

Kate: Before my Parkinson’s diagnosis in May 1996, I was a member of a local Toastmasters group. Toastmasters International is an organization that provides a program in oral communication and leadership training.

The feedback on speeches was always the same: “You didn’t seem nervous except for the tremor in your left hand.” I dismissed the comment, believing that the tremor was caused by public speaking anxiety.

Another member’s feedback was: “Your left arm and hand just seemed to hang there and served no useful purpose,” while another participant commented, “You didn’t seem to show any facial expression.” Their feedback prompted me to seek medical help. From then on, I affectionately referred to this group as the Toastmasters Doctors.

Joe: What went through your mind when you first received the diagnosis of Parkinson's disease?

Kate: I will always remember May 8, 1996, the day I was diagnosed with PD. My left arm hung there like a dead animal. I dropped things. People told me I had a blank facial expression. My voice was soft and raspy. Typing on the computer slowed and became punctuated with errors. A typed word such as “home” appeared as “homeeeeeeee” on the computer screen. My fingers grew minds of their own.

“I have good news and bad news,” the neurologist said. “The good news is that you don’t have a brain tumor, Lou Gehrig’s disease or Wilson’s disease. The bad news is that it appears that you have Parkinson’s Disease.”

Somehow I missed the part about the good news. I didn’t want to have anything to do with any of those dreadful diseases. Too afraid to ask out loud, I silently questioned:

Will I end up in a wheelchair?

Will I be able to work until retirement?

What about playing in the accordion competition?

Why me, God?

Joe: When someone has Parkinson's Disease they aren't the only one it affects. The disease has both emotional and physical ramifications for loved ones/family members and any other type of care givers. How has this disease affected your family, both physically and emotionally?

Kate: My immediate family consists of my husband, Tom. After 33 years of marriage, I know that it’s best for Tom to speak for himself.

Tom: PD is a disease of function. We have been very fortunate that Kate’s symptoms have been minimal compared to others. When Kate cannot function, such as when her meds are not working and her energy or voice is low, it can be frustrating. Even walking the dog or staying up late is out of the question! PD has taught me how to be more patient and go with the flow. It has also taught me the value of exercise, good health and not taking everyday function for granted. You always need a Plan B!

My biggest fear is that someday Kate’s functioning will deteriorate to the point that she will be in a wheelchair and in need of more extensive care. I have resigned myself to deal with that reality when I come to it. In the meantime, damn the PD and full speed ahead!

Joe: The disease can be devastating, but again, like everything else in life, it can also have a positive impact on a person's life. Name one positive outcome this disease has had on either you or a loved one.

Kate: Although I’ll probably never reach the point where I’ll feel “lucky” to have PD (as Michael J. Fox did in his book, “Lucky Man”), I’ve become a better person because of having it.

I am more appreciative of each day and don’t take life for granted. My new mantra is “Plan for tomorrow AND live for today.” I am less fearful, no longer afraid of trying new things.

I am more generous in helping others by writing my blog, co-founding a local Deep Brain Stimulation (DBS) Surgery Support Group, and soon I will be volunteering at the hospital, meeting with DBS patients and their families.

I am more empathetic and patient with myself and others with disabilities.

Joe: If you had one word of advice for anyone affected by this disease, what would it be?

Kate: My advice to others living with PD would be: stop concealing and start revealing.

My biggest regret along my PD path was not sharing with others about my struggles with PD. I knew that if I didn’t share about PD, others such as my husband those who knew about my PD, would bail me out by speaking for me. I never knew who knew about my secret, and what they knew.

I was ashamed about having PD as though it was my fault that I had this malady. I was living a lie. I insulted people by not sharing my life with PD with them. I deprived people of the opportunity to provide support.

In April 2005 after having PD for nine years, I decided it was time to stop concealing and start revealing. I sent an email disclosing my PD to more than 300 friends, family, work associates and hospital volunteers. I ended my “coming out” story with: “Having Parkinson’s is no longer a taboo subject for me. Please feel free to bring up the topic and ask questions. I may provide more information than you ever wanted to know.”

The Creative Healer

The Creative Healer
An Interview with Filmmaker Deborah Fryer

In recognition of her efforts in fostering understanding about Parkinson’s Disease, Deborah Fryer was awarded Accolade’s Humanitarian Award for her film, Shaken: Journey Into the Mind of a Parkinson’s Patient. Annually, this award is given to a filmmaker who makes a significant contribution to social change or a humanitarian effort. Shaken has also received numerous international awards.

Deborah has spread awareness about Parkinson’s more than anyone that I know. Her film Shaken compassionately explores human suffering and the courage of a man living with young onset Parkinson’s.

The following is my email interview of Deborah:

Kate: Why are you so committed to the Parkinson’s cause (vs. cancer, heart disease, etc.)?

Deborah: Shaken is my first independent film. I met someone my age with Parkinson’s and wanted to learn more about it, so I started researching it on the web. The more I learned, the more I realized that this is a story that has to be told. No one is talking about it the way they talk about cancer or heart disease, but it seems like about one in five of my friends has a family member with Parkinson’s.

Kate: What has been your most satisfying achievement to date?

Deborah: It means so much to me when I get feedback from people with Parkinson’s who thank me for telling their story and thank me for giving them hope. These are some of the comments I have recently received from people with Parkinson’s.

Kate: Where does your strong drive to achieve come from?

Deborah: I don’t know. A palm reader once told me that I had a very old soul from the island of Lemuria, and that my karma was to make the world a better place. She told me that I can’t stand it when there is violence, injustice, pain or suffering in the world, and that my life purpose is to tell stories that don’t usually get told for the purpose of healing the suffering that goes on in the world. I had never met this woman in my life, and she knew nothing about me, so how she pegged me so accurately, I have no idea, but she was right.

Kate: How are you able to maintain objectivity and balance in your professional and personal life?

Deborah: I don’t know that I maintain either. I work hard. I get on my yoga mat every day. I meditate and spend time with my boyfriend and my animals daily. I am still working on working less, sleeping more, and building free time into every day. As an independent filmmaker, it is hard to find that balance, and I am still very much in the searching stage.

Kate: Has any particular life experience significantly contributed to your strong sense of confidence?

Deborah: It’s all an illusion. I have good days and bad days just like anyone else. I cry when I need to. I hug my dog and talk to her when I am feeling like the biggest loser on the planet. I write in my journal. I reach out to friends. I go for a hike by myself in the woods.

I try to take the many mistakes I make as an opportunity to learn. I know I reach and aim high, and I sometimes miss the mark. It can be humiliating, disappointing or devastating. And I know that when I hit bottom, that the laws of physics and the universe say that nothing is permanent, so I know that I will be back on top of the wave before long.

And I also know that if something doesn’t work, then I can always try something else. I think my yoga practice has helped me be less attached to the outcome and more interested in the process.

Kate: If you could live your life over again, what would you do differently?

Deborah: I would go to medical school. I am so interested in science, health, healing and the intersection of those three things. I think so much of health and healing has to do with our minds and the stories we tell ourselves, and yet the miracles of modern medicine and pharmaceuticals are mysterious and fascinating to me. I would want to learn what they teach in American medical schools, and would also want to study in India and China to understand more about the eastern beliefs in illness and well-being.

Further information about Deborah and her film Shaken, can be found her website Lila Films at: www.lilafilms.com.

Meet the PD Warrior

Joe Ralph, author of the blog, Day By Day Adventures of the PD Warrior, lives with his wife and daughters in a small town in southwestern New York. Diagnosed with Parkinson’s Disease four years ago at the age of 38, he has been a registered nurse for ten years. Joe started playing the piano at the age of four and received several scholarships throughout the years for his piano playing ability. He also plays several other instruments and is known in his own circle for his artistic ability, i.e. drawing and painting (his passion is aviation art). Joe aspires to become a published author.

Kate: If you have a demanding health or physical or emotional situation that you learned from, describe what you have learned by caring for yourself.

Joe: Parkinson's Disease has been a real eye opener for me. As a RN, I took care of people with the disease for many years before being diagnosed with PD myself. Once I was diagnosed, everything took on a whole new meaning for me. Taking care of someone, and being able to put yourself in their place because you know what it is like to experience the tremors, the loss of strength and balance, and the emotional tidal waves that go along with everything are two different things. Having this disease has brought me to a higher level of understanding and greater respect for all the people I take care of, not just the ones with PD. It is one thing to understand a disease using "book smarts" and quite another to go through it yourself.

Kate: If you have overcome a difficult obstacle, including handicaps, how did doing so help you develop your character and abilities?

Joe: For me, Parkinson's Disease came with two huge obstacles to overcome: the physical aspect of the disease, and the emotional aspect which was compounded by the fact that I had been suffering from clinical depression (which I hid from everyone) for years before ever getting any symptoms of PD.

Initially when dealing with the PD, I went about trying to deal with the physical aspects first, shoving the emotional barriers aside in an attempt to ignore them as I always done in the past. The problem with doing things this way was the fact that no matter what strides I made physically, it was never "good enough" for me which in turn added to the emotional weight I was carrying around. It soon became a vicious cycle.

The extra emotional weight made the physical traits worse, which then compounded my depression even further until eventually I had a break down - I almost committed suicide. Thank God I decided to get help instead. Once I dealt with all of my emotional turmoil and had things under control that way, it became much easier to deal with all the physical set backs PD sent my way. I learned a lot because of this.

Now when I talk with my patients I address their emotions first. Sometimes I even open the door by sharing my own emotional roller coaster ride with them. Having PD seems to have made me wiser in ways I never thought possible. It has certainly made me look at things from more of a philosophical point of view.

Kate: What particular character trait do you most value in yourself and how did you discover you had this trait?

Joe: To me, my most valuable trait is my ability to listen well, and empathize with others. It's a trait that I seem to have had all of my life. Ever since I can remember, all of my friends have come to me with their problems and I have always been able to help them look at things from a different angle, either by playing the "devil's advocate," or by simply telling them my opinion and reassuring them, building up their self-esteem. Now I seem to have an even greater ability to empathize.

Kate: Have you contributed to a person or group in a way that makes you proud?

Joe: One of the duties I have as a RN is to educate others, including fellow staff members. Several month's ago I was approached by the in-service coordinator for the facility where I work. She asked me if I would be interested in developing a presentation about Parkinson's Disease and presenting it to our PATHWAYS Class (PATHWAYS is a class we offer to our Nurses Aides as they gain more experience. These classes teach them how to be good mentors for their coworkers, and also enhances their leadership skills). She said she wanted me to do it, specifically because she was looking for someone that could put a spin on the program by giving them an insiders view of the disease. It was an offer I couldn't refuse.

The result was a Power Point presentation entitled "Who Am I?" The presentation not only provides information about PD, but is set up to make people realize that the patients they are taking care of are "real people." People that have their own story to tell, people that have seen and done fantastic things in their lives. People that have had their own hopes and dreams - and still do - people that have had their own identity stolen from them in some fashion or another by some disease. The presentation was originally intended to be a one time thing, but the response from those taking part was so huge that it is has now been incorporated into the training class that all nurse's aides must go through before they become certified at our facility.

Kate: Have you won an award or received a reward that made you proud?

Joe: The best reward I have ever received - one that I certainly don't deserve - is the family I am blessed with: my wife, my children, and as of one month ago my first grandchild. To say that I am proud of them does not even begin to describe how I feel. To say that I couldn't survive my PD Adventures without them is only the beginning of the story. They are the crutch that I lean on when I am feeling weak. They are the shoulders that I cry on when times are bad. They are my heart and soul. Without them I am nothing.

CHECK OUT JOE'S INTERVIEW OF KATE AT HIS BLOG AT DAY BY DAY ADVENTURES OF THE PD WARRIOR.

Inspiring Words

Perhaps I’m nosey, but I am fascinated by people and how they manage their lives. I’ve been inspired by reading interviews of everyday people.

In an effort to promote awareness and understanding about Parkinson’s Disease, I have decided to implement this concept in my blog.

My email interview of Carol D. O’Dell, author of Mothering Mother was published on my blog.

Tomorrow, I will publish an email interview of Joe Ralph, the author of the blog, Day by Day Adventures of The PD Warrior, on my blog.

Simultaneously, Joe will publish an email interview of me on his blog.

It’s not as confusing as it seems. Just check back tomorrow, Monday, September 17, 2007 on both blogs for two inspiring interviews.

Shake, Rattle and Roll
http://katekelsall.typepad.com/my_weblog/

Day by Day Adventures of the PD Warrior
http://pdwarrior.wordpress.com/

Day 1 of Virtual Book Tour: Carol O'Dell, Author of Mothering Mother

I'm excited! Today is Day 1 of Carol O'Dell's Virtual Book Tour.

The following is my online interview with Carol O'Dell, author of Mothering Mother. I look forward to your comments about this interview and further questions to Carol.

1. If you could do one thing differently while caregiving your mother, what would that be?

Relax. Trust. Be present. Seek out more help. Prepare. Accept. I would say all these things about life in general. I wish I could have made her happier, more relaxed. I know that realistically, I couldn’t have, but maybe in small ways. It always seemed like I had so much to do. I wish for more quiet time with her and me at peace.

2. What, in your estimation, was the impact of caregiving your mother on your husband and children?

The impact was huge, but not all bad. It affected every area of our lives—our intimacy, our interaction with each other and others, and our time spent together. I would say that it restricted our activities. We were limited on how much we could all go and do. We took turns. At the time, and at times it felt like a huge imposition, but in retrospect, we were still a family. We still did things together, and the sacrifices don’t seem so huge now.

The psychological impact on my girls is something I think about. I don’t think anyone suffered irreparable damage, but we certainly made sacrifices. I tried (very hard) to shield my girls from anything I felt was too dark, too harsh, and too shocking. Sacrifice is part of being a family. We’ve almost become too cushy in our society. Our children will not be prepared to face life if they don’t have some difficult events to live and work though. Family life teaches us how to live. The tricky part is knowing when enough suddenly becomes too much.

3. How did caregiving your mother impact your marriage in the short and long term?

My husband was amazing, and honorable, and he kept my mother and myself from “losing it” on more than one occasion. But, to my defense, let me emphasize as I did in my book—he got up and went to work each morning. He left the house. He had other goals. Did he sacrifice his personal time? Our marriage time? Absolutely. In regard to long term effect? Nothing detrimental. Our marriage feels stronger for all the “trials and traumas” life has thrown at us. We’ve been married 28 years and raised three daughters, so this isn’t the first difficult challenge we’ve faced, and probably won’t be the last. When I look back at his strength, his faithfulness, his tenderness with my mother and with me—my heart beats faster.

4. How did you decide to be the sole caregiver for your mother, as opposed to other options (e.g., assisted living, nursing home, home health care agency in home, sharing caregiving with relatives, etc.)?

As I wrote about in MOTHERING MOTHER, it began with my mother asking me over and over as a child to never put her in “one of those homes,” and then, when my adoptive dad died and he had us all promise to “be good and take care of each other.” As an adult, I do know that I had options, and that I had to do what was right for everyone, but I am a deeply connected family type person. I had stayed home (primarily) to raise our three daughters, and therefore we had not grown into a two income lifestyle. We chose not drive the latest car and live in a less palatial house in order for me to be more involved in parenting our children. So, when my mother needed my care, I had already created a lifestyle she could be a part of. We moved, found a home where we could add a small apartment onto our house, and brought my mother to live with us. It felt natural.

I might also add that at the end of my mother’s life, her dementia/Alzheimer’s had escalated to the point that if she had continued to live, I would have had to seek alternate arrangements. She was more than one individual could manage, and I was truly at the end of my physical and emotional rope. It was also the time she began to let go, and I hung in there and was able to give her a home passing.

I am in no way against other options—every family needs to find their own path, and they also need to realize that they may wind up making a series of decisions, and not just one. I know of so many amazing people and communities within the health care and elder-care fields. It’s important to do your homework, but there really are much better choices than there used to be. Caregivers also need to consider the possibility of caregiving more than once in their lifetime.

5. What did you learn from the experience of caregiving your mother about yourself, your mother, Parkinson's and Alzheimer's Disease?

I learned how strong my family was. I learned how we resilient we all are. I learned how to give all that I had and then some—and that I could do it. I learned how much I’m loved. I learned to take responsibility. I learned to accept my relationships just as they are, and me, just as I am. I learned to stop trying to fix things—or people. I learned that even after a lifetime of faith, the fear of dying is still a pretty big fear. I learned that I don’t and can’t be perfect, and to let it go. I learned that my sense of humor (and sarcasm) could keep me alive. I learned to finish something.