Shake, Rattle and Roll

What Do Camomile Tea, Green Peppers and Celery Have in Common?

 

 

Drinking camomile tea could help to treat sufferers of Alzheimer's and Parkinson's. Writing in the Guardian, Dr Tom Smith said that camomile tea (as well as green peppers and celery) contain luteolin, which is a substance that has been found to reduce inflammatory reactions in the brain.

 

Article at:

 

Camomile tea 'could aid' Parkinson's and Alzheimer's

http://www.barchester.com/Healthcare-News/Camomile-tea-'could-aid'-Parkinson's-and-Alzheimer's/376/2191

 

Related article about the benefits of chamomile tea:

 

A Good Night’s Sleep Is Worth a Million Dollars

http://katekelsall.typepad.com/my_weblog/2008/06/a-good-nights-sleep-is-worth-a-million-dollars.html

I Almost Left Parkinson's at Home

I almost left Parkinson’s at home when my husband, Tom and I vacationed in Colorado last week. Parkinson’s has always accompanied us for the past 12 years.

For six days, I didn’t write in my blog. I left my laptop at home and walked smugly by the Internet cafes that called for me at every corner. I didn’t utter a word about Parkinson’s.

 

I even forgot to bring the access controller for the deep brain stimulator. No worries, I correctly thought, as Parkinson’s is at home.

 

At breakfast, Tom told me to quiet down as I was speaking too loud. This is a first. Perhaps all those "Think Loud" voice therapy sessions were starting to pan out.

 

And then I knew with certainly that Parkinson’s was not vacationing with us when I accomplished the next challenge. After paying for our tickets for a tour at Cliff Palace in Mesa Verde National Park, an out-of-shape, overweight park ranger warned us about the risks involved in scrambling up and down the mesas. If he can do it, I can do it, I rationalized. And do it, I did. I climbed five 10-foot steep vertical ladders and scaled the red rocks on the 100-foot vertical climb to the exit. I was exhilarated.

But later at dinner that night, Parkinson’s “reared its ugly head” (Tom’s words). If I would have thought quickly enough, I would have cautioned “don’t make a mountain out of a molehill.” You must understand that I made a major mistake, an earth-shattering faux pas. I dropped my unused fork on the carpet while we were dining at an Italian restaurant. The expression on Tom’s face was negative. Was it anger, hostility or was he startled or scared? I started to explain how I dropped the fork until I realized the ridiculousness of this argument. I motioned for the young blonde waitress and asked for a replacement fork. She probably never dropped a fork in her life, but then just like magic, the fork inexplicably slipped from her hands. Her negative self-chatter probably went something like this, “How could I be so stupid?”

 

After this incident, I pondered how we all take our lives so seriously, creating mountains, not molehills. And how would Tom respond if and when I started falling just like the fork, but on a much grander scale?

 

Parkinson's will never get left behind again.

 

A Good Night's Sleep Is Worth a Million Dollars

Most of us with Parkinson’s are plagued with sleep disorders. Up until four nights ago, I suffered from insomnia. I was so excited about my new discovery that I posted a question to Kathrynne Holden of the Ask the Parkinson Dietician sponsored by the National Parkinson Foundation. My question and her response follows:

Hi Kathrynne,

Four nights during the past week, I have had a cup of chamomile tea one hour before bed.

I have had wonderful sleep during those four nights. Typically, because of PD, I have insomnia and fragmented sleep.

What are the benefits and risks of one cup of chamomile tea a day? Are some brands better than others?

Thanks,
Kate

Dear Kate,

 

Chamomile tea is an excellent choice, and I recommend it for those who experience insomnia. The benefits are that it soothes and relaxes, and promotes a good night's sleep. The only risk I'm aware of is that it is in the ragweed family; people allergic to ragweed could be allergic to chamomile, although so far I've never heard any reports of this.

I don't know of a particular brand that's better than others; I generally buy it in bulk and keep it in a tightly-closed container.

Best regards,
Kathrynne Holden, MS, RD

For a Parkinson Tip of the Day visit:
http://www.nutritionucanlivewith.com

 

 

http://forum.parkinson.org/forum/viewtopic.php?p=15001#15001

 

*****

 

Now if I also looked and felt like a million dollars, I'd be a wealthy woman.

 

 

Dreaming

Dreaming

By Terri Reinhart

Copyright © 2008

 

Did you ever have one of those days when you just knew you could do anything?  You feel good and confident and if anyone asks if you’d be willing to help with something, you immediately reply, “Of course I will!!” and you mean it. 

 

I must have had one of those days a while back because now I find that I’m responsible for writing the names of all of our high school graduates on their diplomas in beautiful calligraphy.  And, that’s not all.  The person who writes the names on the high school diplomas also writes the names of the 8^th graders on the certificates that they are given at Continuation.  I will get them done and I will probably even enjoy it, but there is some humor in giving a calligraphy job to a person with Parkinson’s disease.  I’d better be fully medicated when I begin this!

 

From time to time, I am pretty realistic about what I should and shouldn’t take on.  I have learned not to volunteer in a classroom all day or I will be thinking murderous thoughts by the afternoon.  That’s not good.

 

I have learned that any heavy work has to be done in short increments, like a minute and a half.  Then it’s time to rest.  I don’t say that I CAN’T do something. I just find ways to do it little by little. 

 

Then there are other times when I just dream.  I get ideas all the time.  I suspect it drives my poor husband nuts, but I can’t help myself.  I know full well that 98 % of my ideas won’t fly and I don’t expect them to.  The fun is in coming up with the ideas to begin with.

 

When I left my job, I had all sorts of plans.  I looked into a number of job possibilities and then looked into going back to school to get a degree in special education.  I researched every angle, calling the advisor at the college and figuring out how I could work half the day and go to school the other half day and get my degree in four years – somehow, without having murderous thoughts by the afternoon.

 

I decided I would build a new chicken house and raise chickens, ducks, and geese again.  I also looked into putting a walkway in our garden, building up the vegetable beds and planting roses along the fence.  I plan on having our garage completely cleaned up and organized by the end of the summer, a bread oven built in back of the garage, a deck built by my studio, and my workroom cleaned.  I also want to do volunteer work, travel, pose nude for a life drawing class, and learn to play at least one musical instrument well.  I have a wide variety of interests.  And these are just the tip of the iceberg.  I haven’t even included anything about the long list of artistic projects that I simply must do someday soon.   

 

I did accomplish one goal.  We have semi finished our little “studio” building in our back yard and it is home to a few art workshops now.  I don’t hope to make a living with my art work, I just want to open up the space and invite people to come and work and learn with me.  I enjoy creating art with other people.

 

Now I also have all sorts of advisors coming up with ideas for me.  My former colleagues would like me make crafty things for their classrooms.  One friend has been trying to convince me (unsuccessfully) of how much I would LOVE skydiving.  I have a new exercise coach who has told me that I WILL start doing Tai Chi.  He’s a big guy, from Delaware, and he’s into Martial Arts.  He’s going to be calling me regularly to make sure I’m following through, so I think I will.  Another friend feels that I should be relaxing and watching lots of movies.  He also checks up on me regularly.  And my younger son says I should go back to college, but not yet.

 

When we drive down Federal Blvd. in Denver, there is a large billboard showing a photograph of a woman receiving her college diploma.  The ad announces “The World’s Oldest College Graduate: Nora Oaks, age 95.”  My son wants me to beat that record.  He wants me to go back to college, but not before age 92.  Then after four years, I’ll have my degree at age 96.  He’s also added another idea.  “But mom,” he says, “you really should live in the dorm.” 

 

I still keep my hatchery catalog.  Maybe someday I WILL have a nice chicken house again. I will also keep my gardening books, my wood working books, and my college catalogs handy.  I plan on coming up with lots more ideas, too.  If it happens that we do have more than one lifetime on this earth, I’ll be in good shape.  I’ll have enough to keep me busy for a long time!

 

But first, I’d better get those diplomas finished.

Taking Up the Challenge

I’ve lost confidence shuffling along my Parkinson’s path for the past 12 years. Now and again, I challenge myself to do something that was easy in the past, but has become more complicated with PD. I now consider traveling alone to be challenging for me (as compared to traveling with my husband, Tom).

 

A couple of weeks ago, I traveled to Kansas City for my nephews’ graduation from Rockhurst High School. Kevin and Neil are identical twins. Aren’t they good looking young men? And smart too.

 

I drove to the Park and Ride and took the Sky-Ride bus to the Denver airport.

 

I schlepped my luggage from the bus to the ticket counter.

 

I used Frontier’s self-serve computerized check-in and walked to the security gate.

 

I had a full body pat-down because of the deep brain stimulator to my brain.

 

I flew to Kansas City.

 

I picked up my luggage at the baggage claim, found the bus to the car rental, rented a bigger car than I am accustomed to and drove to a motel in Overland Park where I stayed for three nights.

 

I visited my family and friends, attended my nephews’ graduation and completed a 5 K walk sponsored by the Parkinson Foundation of the Heartland.

 

Several days later, I flew from Kansas City to Denver repeating the same steps that I had taken when flying from Denver to Kansas City.

 

In my pre-Parkinson’s days, traveling alone was unremarkable and uneventful. Twelve years into Parkinson’s, traveling alone has become a big deal. Taking up this challenge has increased my confidence and self-esteem. Knowing that I am capable of traveling alone has given me a sense of competence and independence.

 

I took up the challenge, and I’m glad that I did!

Too Much Parkinson’s

I’m PD-ed out lately from thinking and talking about Parkinson’s 24-7. Sometimes it feels as though there is just way too much Parkinson’s in my life.

 

When I recently co-lead a PD support group, I became aware of all the tasks and skills involved in conducting an effective meeting:

 

·        Arrange a topic and/or speaker

 

·        Send out announcements of the meeting

 

·        Keep track of RSVPs

 

·        Pick up the key to the meeting room

 

·        Get the room ready and move tables and chairs

 

·        Purchase snacks

 

·        Schlep in snacks into the meeting room

 

·        Welcome and introduce new members

 

·        Introduce the speaker

 

·        Encourage those who talk too little to speak up and ask questions

 

·        Discourage those who talk too much

 

·        Keep track of and follow-up on non-verbals

 

·        Ensure that members are getting what they want from the group while keeping your own PD symptoms under control

 

·        Wind up the meeting on a timely basis

 

·        Move tables and chairs and return the room to its original condition

 

·        Return the meeting room key

 

 

So if your PD support group leader seems tired lately, you’ll understand why she may be PD-ed out. Better than understanding, is offering to share one of the specific tasks required in maintaining a meaningful PD support group.

Colonoscopy’s Unexpected Gift

My doctor says “You are at the age where you need to be concerned about your colon care. You need to have a colonoscopy.” I grimace. “If the first colonoscopy is clear, then you won’t have to have another one for 10 years when you are 68,” she says reassuringly. “With Parkinson’s, I don’t expect to be around in 10 years,” I state matter-of-factly. This time, she grimaces.

By the time I return home, the colonoscopy office left a voice mail indicating they were eager to schedule the procedure. I’m thinking they must not have many patients who willingly call for an appointment. I delay returning the call. The scheduler is persistent and calls me again, even though I did not return her first call.

The scheduler suggests several dates, and my responses are: “Nope, I’ll be in New York City.” “No, that date won’t work as I have a dance performance.” “No, I’m flying to Kansas City for my twin nephews’ high school graduation.” Exasperated, she says, “OK, you suggest some convenient dates.” I come up with the Tuesday after Mother’s Day.

Everyone who has had a colonoscopy tells me the same thing. “It doesn’t hurt. You’re knocked out. Don’t worry about it.” Finally, the truth comes out about the preparations being the most difficult part of the entire procedure. The medical staff also reassures me that “the patients say that the prep is the most difficult part of the procedure,” as the staff knows better than getting anywhere near a colonoscope.

I was scared of the preparation, more than the procedure itself. For the procedure on Tuesday, the preparation to get your system cleaned out is the following:

• Last meal of breakfast on Monday with no real food until lunch on Tuesday

• No medication from noon on Monday otherwise the meds might clog the colonoscope

• Only clear liquids (and this does not include California Chardonnay) from noon on Monday until 6 AM on Tuesday

 • No liquids of any kind after 6 AM on Tuesday

• At 6 PM on Monday, begin downing at the rate of one glass every 10 minutes, nine glasses filled with 8-ounces of an atomic-powered laxative; totaling 72 ounces

• Set the alarm for 4 AM on Tuesday and drink four more 8-ounce glasses, totaling 32 ounces, before 6 AM

• Bowel movements start about an hour after the first glass and last for 6-8 hours

• You may feel bloated, chilled or nauseated.

• “If you start vomiting, stop drinking the solution for 30 minutes then restart

• Warnings that if you don’t comply with any of the above, then the procedure may need to be rescheduled!

Being a compliant patient, I follow all the above. In fact, it is noted in my chart that “the quality of the prep was excellent.” Being compliant results in me feeling like I have food poisoning, I am dehydrated, and I get very little sleep that night. Also without Parkinson’s meds for nearly 24 hours, I am slow and shaky.

I wake at 4 AM on Tuesday to discover that it’s a cold rainy day in metro Denver. It’s a good day to stay inside and have a colonoscopy, I tell myself. I discover that Cindy, the Medtronic representative for deep brain stimulation, is at the procedure to zero out the stimulator before the colonoscopy and then turn it back to the correct settings afterward. Cindy arrives at the hospital right on time at 7:30 AM after driving 50 miles in rush-hour traffic on rain-soaked freeways.

Right before I change into the hospital night gown for the procedure, Cindy turns off the stimulator by putting the control device on top of my chest. The pre-op staff look inquisitive, and we hear mumblings of "what are they doing?". We say that I have an implanted deep brain stimulator for Parkinson’s Disease, that it’s like a pacemaker to the brain. They scratch their heads as though we are speaking a foreign language.

The colonscopy procedure itself goes "without incident" I am told. Nobody wants an incident.

I am in a sedated fog when Cindy returns after the procedure to turn on the stimulator to the same settings of my last programming session of March 4. I think these settings are close to optimal for me right now.

When I visited New York a couple of weeks ago, the security checks must have inadvertently triggered a change in the settings. Since New York, my voice has been devastated (see Giving a Voice to Parkinson's).

However, when I am discharged from the hospital after the colonoscopy, I notice that my former strong voice returns. With a return to the settings of March 4, getting my voice back is colonoscopy’s unexpected gift.

By the way, the results of the colonoscopy indicated no polyps and no cancer. Yipee!!

Related Link:

Colon Test Not Quite Fantanstic Voyage by Linwood Barclay

May Milestones

“My path has not been determined. I shall have more experiences and pass many more milestones.”
Agnetha Faltskog

Significant personal milestones in my adulthood have occurred in May. These dates in May are forever branded in my brain:

May 19, 1972: Obtained my Master’s degree at the University of Wisconsin in Milwaukee

May 23, 1972: Immigrated to Canada

May 29, 1972: Began my career in Windsor, Ontario

May 11, 1974: Got married in Milwaukee, Wisconsin

May 8, 1996: Diagnosed with Parkinson’s Disease in Westminster, Colorado
See The Answer

May 4, 2005: Had Deep Brain Stimulation (DBS) surgery in Sacramento, California
See Uneventful Brain Surgery

May 5, 2006: After a year of programming sessions, the programmers finally admitted that “we can’t help you with this” or as I interpreted it, "this is as good as it gets."
See Get with the Program

May 31, 2006: Ended my career in Denver, Colorado because of Parkinson’s disability
See PD Went to Work

and It’s Not Working

May 14, 2007: Began DBS reprogramming sessions with Dr. Olga
See Get with the Reprogramming

Each event has its own story. But May 4, 2008 being the third anniversary of my DBS surgery, I’d like to reflect on the question that people eventually ask: “Would you have DBS over again?” Up until about a year ago, the answer would have been a definite “no.” In fact, I was the only person that I knew who wouldn’t do it over again. I longed for the positive benefits of DBS. I hated having the DBS system inside me and went to a neurosurgeon and asked for it to be removed. Shocked by my request, he referred me to the local expert on DBS programming, Dr. Olga.

Dr. Olga has a passion and knack for DBS programming. This DBS Wizard doesn't give up on her patients. Her compassion and competence has been inspiring.

Now my answer to the “Would you do it again?” question is “yes” providing a skilled DBS programmer is close at hand.

I look forward to many milestones to come.

Baby Stepping It All the Way

I am overwhelmed by the 10,000 persons with Parkinson’s (PD) and their supporters participating in the PD Unity Walk last Saturday, April 26, 2008, at Central Park in New York City. Outside the park, New York is bustling, and people move fast. Inside the park at the walk, people take baby steps.

I long for the days of old, running 10 milers in the Canadian Rockies and 12 kilometers races at the Bay to Breakers in San Francisco and Bloomsday in Spokane. I reminisce about the long bike rides that Tom and I enjoyed in California, Vermont and Wisconsin.

I am confined, restless and eager to get moving. I feel guilty that I can so easily walk, while others with PD have major mobility and balance problems. I fantasize flying above the Baby-Steppers in Central Park but instead I become one of them, baby stepping it all the way. But at least we are out there taking steps, albeit slow ones.

Julius Erving said, “To be great we need to win games we aren't supposed to win.” We take baby steps to win the biggest game of our lives - conquering PD.

Miracle Cures

Miracle Cures
By Terri Reinhart
Copyright © 2008

I was shopping the other day at my favorite natural foods store. We do our best to eat good healthy natural food, of course, all the time. And with the exception of the occasional burger from the fast food restaurant, milkshakes, anything that is chocolate and mmmmm… those jalapeno bites from Arby’s with the red sauce that looks like transmission fluid, I do pretty well. As with everything in life, it is nice to have a balance.

I meandered down one aisle, looking closely at everything and feeling pretty good. I was doing the good mom thing and buying natural organic food. Then I went around a corner and was immediately accosted by an older woman (okay, she was maybe a little bit older than me) offering me samples. Would I like a sample? I asked what the samples were but before she answered, she looked at me closely and asked, “Are you in pain?”

“Uh, no, I’m just moving slowly.”

“But are you in pain?”

Okay, now I figure it’s easier to just explain it right out than to risk any more inquiries. “No, I’m not in pain. I have Parkinson’s disease. I just move slowly.” How could I have known what would happen next?

“Did you know that this is the number one diet supplement for Parkinson’s?” She began. And she went on and on about her product, about which she was obviously very passionate. I learned an awful lot! And after several minutes I was quite ready to believe that it stops pain, cures the common cold, helps hair to grow, makes our bones strong, stops the moodiness of menopause, and helps prevent global warming. She had me hooked. It is fun to listen to anyone who is enthusiastic but a fanatic can be irresistible! It’s very possible that I would have even bought some of her miracle supplement, except for one thing. She was just a little too confident and suggested that I try the sample, walk around the store for ten minutes and then come back to let her know how much better I felt. I had the picture in my mind of the crippled child throwing away his crutches and wondered if I’d rip off my leg braces and dance through the aisles of the store. But no, ten minutes after taking the supplement, I felt no different than I had before. Well, that’s not entirely true. My legs were aching and my speed was approaching that of a geriatric turtle. I was too embarrassed to go back.

Once home, the more reasonable parts of my brain kicked in. How many miracle supplements, remedies, and therapies had I been presented with in the last ten years? I’m actually not knocking them at all. I believe very strongly in natural, wholistic medicine and have often consulted with doctors who practice wholistic medicine. There are so many different products out there that I am more than happy to allow my doctor do the recommending for me. He’s also an M.D. so I know he’ll understand my prescription medicines and how things might interact, too. Letting him be the expert makes less work for me and is ultimately less expensive. As with any medicines, what works for one person doesn’t always work for others. Even at best, it can take time to find what’s right. When we do find something that works well for us, it’s tempting for us to become the fanatical salesperson telling about our wonderful miracle cure-all.

Here are my magic remedies:

1. Hot baths. I am a firm believer that there is nothing that isn’t helped by a hot bath. If need be, you can even take three or four in a day. The only side effect is wrinkly fingers and toes.

2. Naps. I’m up to two a day. When my body says go to sleep, I say “Sure, why not.”

3. P.G. Wodehouse. Having my husband read passages out of Wodehouse’s novels can be nearly as good as the meds. But it has to be my husband reading them! It’s not just the words, you see. It’s his presentation. As I said before, an enthusiast is fun to listen to, a fanatic is irresistible!

4. Chocolate. This is best when shared with my 14 year old daughter.

5. Late conversations with my son. And it doesn’t matter what we are talking about.

6. Going out to the coffee shop with my good friend. I’m not going to divulge his name. I don’t want him to be suddenly deluged with invitations for coffee. He’s hyper enough as it is. But he makes me laugh and even if I forget to take my meds, I will be symptom free for another couple of hours.

7. Diet pop. I know, those who promote natural healthy foods will say that diet pop is poison. But in reasonable doses and shared with a dear friend, there is therapeutic value.

8. And last but not least, those jalapeno bites from Arby’s. Don't forget the transmisson fluid.

I’ll tell you what. Try one of these remedies. Walk around for ten minutes and then come back and let me know how much better you feel.

Message from the Folks at the Parkinson's Unity Walk

The rain cleared away and the sun came up just in time to welcome thousands of people into Central Park for the 14th Parkinson's Unity Walk last Saturday, April 26. The weather was beautiful all day, and the experience was more than humbling for everyone there!

As many of you know, we webcast this event Live from Central Park! Beginning in 2-3 weeks, the webcast will be available on our website to view all year. You will hear from walkers, sponsors, PD organizations, and will get to see the entire program! So, if you were unable to participate in the Walk, or would like to be a part of it again, please check out our website, www.unitywalk.org, to enjoy the webcast all year long!

One man tells his Parkinson's Fight, and Efforts to make the disease history. He hopes to step closer to a cure by helping us spread awareness. Jerry Tully, a producer for ABC news magazines, joined us on Saturday at the Walk, and put together this great article:

Stepping Closer to a Parkinson's Cure
http://abcnews.go.com/Health/MindMoodNews/story?id=4728498&page=1

Please continue to help us as we continue to find a cause and cure for Parkinson's disease. Share this article with your family and friends, and remember, donations for the 2008 Parkinson's Unity Walk will be accepted until June 1, 2008.

From everyone here at the Parkinson's Unity Walk, we are all in this together.

All the Best,

Stacie Mishler
Event Director
Parkinson's Unity Walk
866-789-9255 (866-PUW-WALK)
staciem@unitywalk.org

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.

"One Half-Hour Later in Newfoundland"

When I lived in Canada from 1972 to 1986, I always chuckled when I heard the phrase on television “one half-hour later in Newfoundland.”

The Canadian Broadcasting Corporation tries to broadcast shows nationally at the same time (a movie will play at eight p.m. everywhere in Canada), although this is not always possible. It has never succeeded in doing so for Newfoundland, however, and hence every advertisement for a nationally broadcast show must end with the catch-phrase "one half-hour later in Newfoundland."

Newfoundland has a time zone one half-hour out of sync with the rest of Canada, and most of the rest of the world. Being on Parkinson’s (PD) time is like being on Newfoundland time – out of sync with the rest of the world.

Everything is slower with my body on PD time. Getting out of bed, taking a shower, putting on my clothes and make-up, eating, brushing my teeth, walking, talking, and even thinking sometimes move at a snail’s pace.

I used to pride myself on being a prompt and efficient person. No stopping and smelling the roses for me during my pre-PD days. Brian, a colleague, once said to me, “Kate, you’re such an instant person,” and I thought he was paying me a compliment. And last year when I attended my 40th high school reunion, former classmates inquired if my flying fingers still typed 99 wpm on a Selectric typewriter like I did in 1967.

The clichéd, tired and overused joke in Canada is that "the world will end at midnight - 12:30 in Newfoundland." Despite what the docs say that “you won’t die from PD only with it,” this is the one race in my life where I will finish early.

I’ve always been competitive, but this is ridiculous.

Related Link about Newfoundland Time:

http://wwp.greenwichmeantime.com/time-zone/north-america/canada/newfoundland/

Dr. Curt Freed Responds to Nature Medicine Articles

Dr. Curt Freed Responds:

There were three articles published in Nature Medicine. Two said that some of the transplanted cells had deposits of protein similar to those seen in Parkinson's but that the transplants still seemed to function. The third said that the transplanted cells looked normal 14 years after transplant.

My group has seen no deterioration in dopamine neurons up to 14 years after transplant. Therefore, I think these articles are worth noting, but the authors had no reason to say that the transplants had "caught" Parkinson's from the patient. I am writing a letter to the editor of Nature Medicine saying that.

Let's look on the positive side. What would a kidney or liver transplant look like 14-16 years after transplant in a patient who did not receive immunosuppression (fetal cell transplant patients do not need immunosuppression). The kidney or liver would have been destroyed. These three Nature Medicine papers and our transplant patients show that dopamine cell transplants survive and function indefinitely without immunosuppression.

Curt R. Freed, MD
Professor and Head
Division of Clinical Pharmacology and Toxicology
Director, Neurotransplantation Program for Parkinson's Disease
University of Colorado School of Medicine
Denver, Colorado

Related Links.
http://www.newswise.com/p/articles/view/539402/

I’m Not Foolin’

April 1, 2008
Click on image to enlarge

April is recognized as Parkinson’s Awareness month. This April, join thousands of others in the Parkinson's community in advocating, educating and bringing awareness to the existence and reality of Parkinson’s Disease (PD).

Here are some suggestions to increase PD awareness:

1. Purchase the book, Proud Hands.

Sponsored by Teva Neuroscience, and distributed by the American Parkinson Disease Association (APDA), Proud Hands is filled with personal photos and stories from people across the nation (including me!) sharing messages of hope and encouragement. The coffee table book is a unique collection from people with diverse backgrounds and ages.

Show your proud hands, and join us in celebrating these daily victories by ordering your copy today!

All proceeds from the sale of this book go directly to the APDA to support research, people living with PD, their caregivers and Parkinson's education.

2. Purchase the award-winning film, Shaken: Journey into the Mind of a Parkinson’s Patient.

3. Purchase the Awkward Dance CD by Charlie Nimovitz. Charlie is a singer, songwriter, and musician living with PD.

4. Participate in, sponsor a walker or make a donation to the Parkinson’s Unity Walk in Central Park in New York City on April 26, 2008.

5. Participate in, sponsor a walker/runner or make a donation to the Steps to the Cure 5K sponsored by the Parkinson Foundation of the Heartland in Overland Park, Kansas on May 18, 2008.

6. Participate in, sponsor a walker/runner or make a donation to the Shake, Rattle & Stroll sponsored by the Parkinson Association of the Rockies in Denver, Colorado on June 15, 2008.

7. While this suggestion won't cost you any money, it is the most difficult task for me personally in spreading awareness about PD: Inform one person a day during the month of April about your experiences living with PD.