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Parkinson's Recovery - The Challenge of Keeping the Faith

Tue, 07 Dec 2010 19:27:36 +0100

Parkinsons Recovery

Even if you are enthusiastic and optimistic about getting
well today, most people with Parkinson's eventually revert
back to the belief that Parkinson's is a "progressively
degenerative disease." This belief is held by almost
everyone. If you have Parkinson's you will get progressively
worse.

Guess what? This belief is not true.

Government publications say Parkinson's is "progressive."
Most web sites with a focus on Parkinson's say this. Many
health care providers believe Parkinson's is degenerative.

But the truth is that recovery is possible. Relief from symptoms happens. People have done it. People are doing it.

Of course it is difficult to sustain a belief that differs from
what knowledgeable authorities say is true. When a bad
day creeps up on you, the normal reaction is to say to yourself :

       "Oh, right. The evidence is staring me in the face.
       I am feeling worse today than yesterday. This means
       I am getting worse, just as 'they' said would happen."

We feel good some days and lousy other days. Note that I
say "we." By "we" I mean everyone - people who are healthy
and those who are not. The difference is that people who
are healthy say to themselves:

"I will be better soon."

People with Parkinson's say to themselves

"Oh God. Here it is."

The recovery process involves good days and bad days
that come in strange and unpredictable patterns. When
the body makes adjustments in its journey to return to a state
of balance the aftermath can sometimes be pain and discomfort.

Our research shows that as symptoms improve, people
report slightly more pain in the short run. Why is this so?
They are paying attention for the first time in their lives to the messages their bodies are giving them.

Ever had an entire day of being virtually symptom free? It is
so wonderful when this happens. Then, a bad day comes
out of no where. Symptoms smack you in the face. It is
challenge to get out of bed. Brushing your teeth is more
difficult than yesterday.

On a bad day it is tough to dispute the belief that you
are deteriorating. After all, you feel lousy. Those who
love you probably hold the same belief that most other
people hold. What is this belief? Your ill health today
means you are deteriorating.

The path to recovery is not a gentle slope in an upward
direction. My observation from working with clients with
Parkinson's reveals that recovery zigzags all over the place.
Interviews with the Pioneers of Recovery also affirm this
reality. Recovery is difficult to track for this reason, especially
when you happen to be the one who is experiencing the
unpleasant symptoms.

The last ditch hope is always for a quick fix. A miracle
would be nice. Surely there is a supplement, a drug or some
therapy that will cure Parkinson's? Isn't a cure just
around the corner?

Wouldn't it be wonderful if a cure were just around the
corner? Waiting for a cure is just a lame excuse not to
give your body what it needs to recover.

The problem in a nutshell is this. If you believe you are
getting worse, you will get worse. If you sustain the belief
that you are in recovery, you will recover.

The belief in recovery will be absorbed by each and every cell
in your body.

               Your cells will exude hope.
                  Hope is infectious.
                       Hope heals.

Robert Rodgers, Ph.D.

Parkinsons Recovery

Resources From Parkinsons Recovery
Vibration Therapy

Natural Treatment to Reverse Cataracts

Aquas: Remedy for Dehydration

Parkinsons Recovery Cruises

Parkinsons Recovery Memberships

Parkinsons Recovery Chat Room

Symptom Tracker
Parkinsons Recovery Weekly Radio Shows

Daily News Updates about Parkinson's Disease

Books

Road to Recovery from Parkinsons Disease

Pioneers of Recovery

Five Steps to Recovery

Parkinsons Recovery,
7722 Cooper Point Rd NW,
Olympia, WA 98502, USA

$5 billion each year!

Fri, 26 Nov 2010 15:22:55 +0100

Did you know that EACH YEAR, it is estimated that nearly $5 billion is given to U.S. charities through workplace giving campaigns? Parkinson's Action Network (PAN) receives tens of thousands of dollars annually through workplace giving. It's an easy way for people to donate and support what we do.

There is a variety of workplace giving programs around the country. Does your company have one? Here are examples of just a few:

Combined Federal Campaign (CFC)

PAN is proud to participate in the CFC as a National Independent Organization. CFC is the world's largest and most successful annual workplace charity campaign, with more than 300 CFC campaigns across the country and around the globe to help to raise millions of dollars each year. Pledges made by Federal civilian, postal, and military donors during the campaign season (September 1st to December 15th) support eligible non-profit organizations that provide health and human service benefits throughout the world. For more information, visit the CFC Web site at www.opm.gov/cfc.

If you would like to designate PAN as a recipient of your CFC giving, our designation number is 10849.

United Way

The United Way (and other independent workplace campaigns) provide payroll deduction options to make it as easy as possible for the employee to give to charities that are important to them. Although the United Way has one of the best known workplace giving programs, there are many companies that offer their own programs as well.

If your company participates in a workplace giving program, you can make monthly pre-tax contributions that can make a substantial contribution to PAN. Please designate PAN as a write-in option to receive your support.

Matching gifts

Employee matching gifts (also known as matching funds) are grants an employer makes to match its employees' charitable contributions. Employee matching gifts often are dollar-for-dollar, but some companies will give double or even triple the original donation. Some companies may also give matching gifts for employees' volunteer efforts.

Procedures vary with each company. Ask your human resources department if your company matches giving! It's an easy way to INCREASE your gift to PAN!

Even if you don't have an employee giving program, it's still easy to give to PAN.

Just click here to give today!

Angela's Story

Thu, 28 Oct 2010 22:33:36 +0100

Parkinsons Recovery

Angela's Story

My guest on the Parkinsons Recovery radio show this week (October 28th) is Angela. Below is an edited version of a story you will find posted on the Parkinsions Recovery blog:

My journey to become PD-free is a work in progress.

I am ending my experiments with Mucuna and NADH
as these have been totally ineffective.

The most effective therapy I have yet encountered
is intramuscular stimulation (IMS) for relief of
shortened muscles.

The most interesting therapy I am currently
involved with is neurofeedback.

I am about to embark on a program of taking
hyoscyamus niger (henbane) in an attempt to
combat the tremors in my right hand.

Angela

Angela will answer questions from listeners during the show. To talk with her, call toll free: (877) 590-0733 between 11:00 am - 12:30 pm pacific time.

Or, connect to the show through your computer by visiting:

www.blogtalkradio.com/parkinsons-recovery

Follow-Up to the Radio Show Interview with Cheryl

I extend a warm invitation to all Parkinsons Recovery members to do the daily meditations that are posted this week on the member website. I invented a series of self- assessments that are designed to help you ascertain whether a dental appliance for adjusting a misalignment in your jaw bone might be a worthwhile strategy to pursue. The assessments were inspired by Cheryl's story which aired last week on the radio show which involved the use of a dental appliance.

P.S.: The Parkinsons Recovery Magazine for October is attached in case you did not receive your copy from last week.

Robert Rodgers, Ph.D.
Parkinsons Recovery

Resources
Dehydration Therapy: Aquas
Parkinsons Recovery Membership
Parkinsons Eye Problems
Vibroacoustic Therapy
Parkinsons Recovery Chat Room
Symptom Tracker
Parkinson's Disease News

Books
Road to Recovery from Parkinsons Disease
Pioneers of Recovery
Five Steps to Recovery
Meditations for Parkinsons

Parkinsons Recovery,
7722 Cooper Point Rd NW,
Olympia, WA 98502, USA

MJFF ANNOUNCES $2.5 MILLION TO DRIVE NEW CLINICAL STUDIES

Thu, 21 Oct 2010 16:36:06 +0100

October 2010

Dear Friend,

Welcome to FoxFlash, The Michael J. Fox Foundation’s monthly update designed to keep the Parkinson’s community apprised of MJFF activities and breaking Parkinson’s news. Please visit www.michaeljfox.org for more information on any of the stories below, to read archived editions of FoxFlash, and to sign up for our mailing list.

MJFF ANNOUNCES $2.5 MILLION TO DRIVE NEW CLINICAL STUDIES

The Michael J. Fox Foundation recently awarded $2.5 million to drive four new clinical studies under the 2010 Clinical Interventions Awards. In one of the first placebo-controlled clinical studies of acupuncture in Parkinson’s, Dr. Benzi Kluger of the University of Colorado, Denver, will lead an investigation into the effects of acupuncture on PD-related fatigue and motor symptoms of the disease. Other grantees will focus on different approaches to alleviating side-effects of long-term dopamine replacement therapy, including dyskinesia.

Find more information, including grant abstracts and researcher bios, on our Web site.

PPMI LAUNCHES AND
MICHAEL J. FOX TALKS TO CNN

Last month, MJFF officially announced the launch of the Parkinson’s Progression Markers Initiative (PPMI), a landmark clinical study to identify and validate Parkinson’s disease biomarkers. The same week, CNN aired an hour-long prime-time special with Michael J. Fox talking about the importance of getting involved. Catch the program in its entirety here.

PPMI will be carried out in 18 sites in the United States and Europe. The study is testing today’s most promising biomarker candidates and, if successful in identifying a PD biomarker, could allow scientists to predict, objectively diagnose and monitor PD as well as definitively determine which medications work and which will not. The study will track 400 people newly diagnosed with PD and 200 who do not have the disease. Recruitment of study volunteers is now under way at eleven sites, with all sites expected to be recruiting by year-end.

To learn more, visit http://www.michaeljfox.org/PPMI. And look for our fall newsletter, exclusively devoted to PPMI, in your mailbox or on our Web site.

READY! SET! RUN!

On Sunday, November 7, runners from across the nation will lace up their sneakers to be a part of one of the most inspiring days of the year. The ING New York City Marathon will play host to 194 Team Fox athletes who are taking on the 26.2 miles to raise funds and awareness for The Michael J. Fox Foundation. We look forward to being there to cheer our runners on and would love to see you out there as well!

If you want to be part of the energy and excitement, throw on your favorite orange clothes and join us! Look for us in Brooklyn (4th Ave and Carroll St, just after the 7-mile mark) or Manhattan (northwest corner of First Ave and East 97th St, just after mile 18) proudly waving our MJFF banners!

Questions? Email teamfox@michaeljfox.org. See you on marathon day!

PAN Advocates Go Above and Beyond

Thu, 23 Sep 2010 16:35:18 +0100

In this issue...
- Policy Focus
- Comments from the Udall Dinner Committee
- Denying Denial, by Joel Havemann
- Bette and Buddy Levenson – A legacy that will not be forgotten

Dear Ralph:

With so much news from the past few weeks concerning embryonic stem cell research, it is easy to lose sight of the many other issues the Parkinson’s Action Network (PAN) has been working on this year. But, this recent court battle over stem cell research highlights the need for advocacy and the importance of the Parkinson’s community in the policy issues of our country. PAN will remain actively engaged as this process plays out, and we will keep you informed as the case proceeds.

Aside from embryonic stem cell research, PAN advocates have gone “above and beyond” in their advocacy this past August and throughout the year. Whether it is attending a town hall meeting to discuss a Parkinson’s registry and funding for research during the August recess, as Illinois Congressional Coordinator Roger Halleen did, or serving on PAN’s Morris K. Udall Awards Dinner Committee to raise awareness for our fundraising dinner, members of our community constantly find new and innovative ways to advocate on behalf of the Parkinson’s community. Joel Havemann writes this month about the inspiring advocacy work of James Trussell, this year’s recipient of the Milly Kondracke Award for Outstanding Advocacy. We also pay tribute to Bette Levenson, who, with her husband Buddy, supported the Parkinson’s community for many years. Bette recently passed away, but her and Buddy’s legacy lives on in the work of Parkinson’s advocates and their accomplishments throughout the year.

As you see, members of our community are tirelessly making contributions toward better treatments and a cure for people living with Parkinson’s. While our work may not always be easy, it is important that we all remain engaged and aspire to go above and beyond like so many members of the Parkinson’s community do every day.

Amy Comstock Rick
Chief Executive Officer

P.S.: PAN’s Morris K. Udall Awards Dinner is less than a month away. If you have not done so already, please visit our Web site and support the work of PAN advocates everywhere.

New Newsletter August 2010

Wed, 18 Aug 2010 15:19:01 +0100

August 2010

THE MICHAEL J. FOX FOUNDATION IN THE NEWS

Research projects supported by The Michael J. Fox Foundation have made the headlines this month. Yesterday Medical News Today reported on an MJFF-funded study that found a link between an immune system gene and PD. The finding will aid research on the role of the immune system in the development of PD to help find better treatments for patients.

MJFF’s landmark clinical study to identify biomarkers of PD, the Parkinson’s Progression Markers Initiative (PPMI), was also reported in the New York Times. The NYT article was part of a series on recent developments in the search for Alzheimer’s biomarkers. To learn more about the implications of recent Alzheimer's findings to speed progress toward PD biomarkers, read MJFF’s News in Context with Todd Sherer, PhD, vice president of research programs. To learn more about the importance of PD biomarkers, read MJFF’s News in Context with Ken Marek, MD, principal investigator of PPMI.

2009 ANNUAL REPORT NOW ONLINE

MJFF’s 2009 annual report is filled with in-depth stories about the research we’re driving to find a cure for PD. With your support, last year MJFF funded over $39 million in Parkinson’s research. We continued to do whatever it takes to bring life-changing treatments closer to patients by driving key next steps on top therapeutic targets. At the same time, we expanded our emphasis on critically needed research tools that will speed the pace of progress across the board.

We’re excited to share with you the 2009 annual report, now available online. Your dedication allows us to continue to make progress toward translating the most promising areas of research into practical treatments for people living with PD.

BRIAN GRANT JOINS

Former NBA star Brian Grant hosted an incredible two days of Team Fox events on August 1 and 2 in Portland, Oregon to raise funds for Parkinson’s research. The events, called Shake It Till We Make It, raised $350,000 for MJFF.

Shake It Till We Make It kicked off with a celebrity gala attended by more than 600 people, including Muhammad Ali, Pat Riley and other NBA stars. A golf tournament was held the following day at a private course at Portland’s Pumpkin Ridge Golf Club.

“These events surpassed my dreams and what I imagined for a first year effort,” said Grant, who was diagnosed with early onset Parkinson’s at age 36. “It’s like winning an NBA Championship your rookie year.”

For more information about the events, visit the MJFF Web site.

New News

Sat, 24 Jul 2010 17:38:56 +0100

JULY 2010 Please note that the information below is from a monthly newsletter sent and received each month by me and the subsequent publishing here is not a endorsement of any type or kind from the Michael J. Fox organisation, it is simply offered here as a informational source.

Welcome to FoxFlash, The Michael J. Fox Foundation’s monthly update designed to keep the Parkinson’s community apprised of MJFF activities and breaking Parkinson’s news. Please visit www.michaeljfox.org for more information on any of the stories below, to read archived editions of FoxFlash, and to sign up for our mailing list.

MRS. LILY SAFRA MAKES LEAD GIFT OF $2.5 MILLION TO SUPPORT PPMI

The Foundation announced today that philanthropist Lily Safra had donated $2.5 million to support the Parkinson’s Progression Markers Initiative (PPMI). Mrs. Safra’s commitment will help galvanize the search for a biomarker of Parkinson’s disease progression.

PPMI is a landmark clinical study that aims to build the toolbox needed to develop breakthrough therapies for PD that could slow or stop the disease from continually worsening over time, at present a critical unmet need for Parkinson's patients.

Read today’s Wall Street Journal article to learn more about Mrs. Safra’s contribution to PPMI.

WHAT CAUSES PARKINSON’S DISEASE?

This month MJFF’s podcast series explores some of the possible causes of Parkinson’s disease. In part one of two podcasts on the topic, KQED’s Dave Iverson talks to Dr. J. William Langston of the Parkinson’s Institute about the current state of research, with a focus on environmental risk factors. Visit MJFF’s Web site to listen to the podcast and read more information on environmental contributors to PD.

Part two in the series, available at the end of the month, will feature a discussion with Dr. Andrew Singleton of the National Institute on Aging about PD-implicated genes and how they contribute to Parkinson’s disease risk.

ENTER OUR PHOTO COMPETITION

Calling all Team Fox members! We want to share all of the fun and creativity of your Team Fox events. Help us out by posting your favorite Team Fox event photos to our Facebook page along with a few fun facts about the day.

We know how much our Team Fox members love a good competition – so we’ll be publishing the best five event photos in MJFF’s newsletter, Accelerating the Cure. And the top five photos will be chosen by Team Fox Celebrity Chair Ryan Reynolds.

Visit the Team Fox Facebook page for rules and eligibility and to post your photo today!