Is There Value In A Patient Perspective Parkinson's Resource Website?

www.shakypawsgrampa.com

The first and most obvious thing that must be said in response to this question is that it depends on the content of the website.  The fact that a PD resource website has been created by a PWP makes it interesting, if nothing else, and probably at least somewhat unique, but does not guarantee its value.

There are plenty of high value PD resource websites online (MJFF, PDF, NPF, and many more).  A list of recommended resource websites is included on my site.

So what value might such a website have?  It is similar, in my opinion, to the question of what value PWPs might provide as partners in the planning and execution of clinical research, board participants working with major PD organizations, presenters at conferences and more.  

I have given this a great deal of thought.  What PWPs bring to the table is their experience LIVING WITH this disease.  No matter how much doctors, researchers, or organization leaders know or how many PWPs they have observed, they don't have this experience.  

I am not saying this so much for the benefit of doctors, researchers, or organization leaders, because it is clear that many of them already understand this.  We, as PWPs and care partners, need to understand this fact and live our lives accordingly.  We have not only a chance, but in my opinion, an obligation to ourselves, our families, and others with this disease to act accordingly, starting with taking an active role in our own treatment.

As a result of the current focus on patient-centered input and initiatives, I believe there will be more opportunities for involvement as time goes by.  My plea to my fellow PWPs, who I care about so deeply, is to embrace this challenge and meet it head on!  We can make a difference!

So who made me head cheerleader?  Forgive me if my enthusiasm runneth over.  I guess I am trying to follow my own advice.

In any case, I obviously have been questioning the value of my website (an ongoing work in progress), which led to the thoughts expressed above.  I have to believe my books have value or I wouldn't have had them published.  Thankfully, I have received positive feedback on all three.  I have also received good reviews on my blog, which now includes 106 articles and has had over 20,000 page views by people in 66 countries around the world (I am in the process of attempting to include the entirety of my blog on my website).  My recommendations, which include my "Top 10's" for PWPs and Care Partners, are based on many presentations made to support groups, involvement in national programs such as the PDF PAIR program, participation in over 20 clinical research studies including two at NIH, attendance at the WPC in Montreal, extensive book research, media interviews, interaction with fellow PWPs and care partners in my own support groups, listening to presentations at Denver area conferences including last years ground-breaking Global Family Community conference at Keystone and more.

Let me be clear.  I know many PWPs who are much smarter and do FAR more for the PD community.  That said, I have to remind myself that I DO have something to offer.  I feel a need (based to a large degree on my faith, I think) to do what I can.  I have done what I can to try to create value.  I will leave it to others to judge whether or not I have succeeded.

Alison Paolini Art

I posted an article at http://shakypawsgrampa.blogspot.com/2014/12/a-christmas-wish.html December 6, 2014 on this blog.  The wonderful illustrator for my children's books, Alison Paolini (a 78 year old PWP), was in the midst of a major transition in her life.  Her dear husband, Rudy, had died recently and she was preparing to move to Canoga Park outside L.A. to live with her daughter.

Alison has been an artist on many levels for years.  Her work has included many styles of painting, poetry, and unique craft art.  Linda and I had a chance to visit her home last October.  She took us up into her loft over the barn to see her collection which was extensive and impressive to say the least.  She surprised me by asking if I would use my PD network to investigate opportunities to have her collection sold to raise money for PD research!  I was obviously blown away by her generosity and agreed to try to help.

In early December, my friend Cheryl Siefert (Executive Director for the Parkinson Association of the Rockies) had some ideas and volunteered to help.  She made contact with Jerry Hensberger, her counterpart in San Diego.  I was able to send some snapshots, not including the one below.  He expressed interest and a willingness to work with Alison to pursue some ideas!  I was able to pass on this good news to Alison on New Year's Eve.  I made contact a few days later with Sarah King (PAN Director for S. CA), who is on Jerry's board and also volunteered to help!  I am grateful to some other friends who were involved in trying to help Alison, including  Karlin Schroeder at PDF, Soania Mathur at MJFF, Diane Cook, and Valerie Graham.

Alison just sent me a snapshot of one of the pieces of art I saw in her loft.  She had noticed that I had paid particular attention to it.  While going through her files preparing to move, she found a picture she had taken of the piece and a poem she had written to go with it.  I was very moved by this and wanted to share it.  Of course, as with most of her art, there is a story that goes with it.

Alison and Rudy were in L.A. for a meeting some years ago, after which they drove through the streets which were very quiet that chilly night.  They happened to see a small group of people huddled around a basket fire, which she described as an "eerie sight".  This painting and poem were the result of that experience.

Alison, you are amazing!

Change of Direction Progress Report

I am working with my PCP office on this program.  They established an ongoing program for this purpose a few years ago.  I like the fact that they know me and my medical history.  I will update my movement disorder neurologist on my progress at my appointment later today.

The program is fairly straightforward.  A scale-like apparatus that I stand on provides body composition information including weight, BMI, fat weight, fat percentage and the distribution of fat in different parts of the body (torso, legs, and arms), predicted muscle mass, water weight, water percentage, and resting metabolism.  Based on my age and gender, they estimated the number of calories at which I would maintain my current weight.  They set a daily calorie consumption goal at 1250.  We also talked about the importance of hydration and set a goal of 80 ounces per day (yikes!).  The combination of calorie reduction, hydration and increased exercise results in weight loss.  My 12-week goal is to lose 25 pounds.

I have been able to live within the calorie intake guidelines (with a big assist from my wife, who helps me keep track of consumption).  My plan calls for 1200 calories per day, 600 of which come from shakes (vanilla, strawberry, chocolate)-one for breakfast and one for lunch.  I add a tablespoon of Greek yogurt and fruit (fresh blueberries, strawberries, and/or blackberries) plus crushed ice, put in a smoothie mixer and voila!  Really quite tasty and satisfying.  I have a low calorie yogurt for a snack and lots of celery dipped in calorie free dressing.  For dinner I can have whatever I want.  The target, taking into account other calories above and beyond the basic shake consumed, is about 500 calories, which can go surprisingly far.  We bought a basic calorie counter book and a great cookbook titled Cooking Light Fresh Food Fast Weeknight meals.

The exercise goal I was given was 30 minutes of cardiovascular exercise six times per week.  We are using our local recreation facility to do a combination of cardio (eliptical, walking track, exercise bike, treadmill, etc.), strength training ("station" equipment-I use about ten of these with focus on abdomen, arms, back, and chest), and stretching.  I am trying to do this three times a week plus walking at home 30-60 minutes the other three days.

I had lost over 10 pounds after the first two weeks, 7 of which was fat, with minimal loss of muscle mass.  I have a ways to go but I am off to a good start. I feel good and I think my chronic fatigue is somewhat diminished.  One thing it hasn't helped so far is my memory.

We have a trip coming up to Florida which will be a good test.  However, we do have a plan that should allow me to "stick with it".  I hope I have more good news to report in the future.  

A Change of Direction

I am ready to shake things up.

Perhaps it is due to the fact that a New Year has started.  Turn over a new leaf. Fresh start, fresh perspective, fresh goals.  Makes sense.

But it's more than that.  I am in a somewhat unique position.  I am a 66 year old PWP with related cognitive issues.  More importantly, I have been a husband for for 45 1/2 years, have two fine sons (42 and almost 40), two wonderful daughters-in-law, and six grandchildren (3 boys and 3 girls from 6-11 years old).

I am happy that I was able to write a book for the PD community that shares intimate insights into my life with a focus on the challenges of living with mild cognitive impairment.  I also shared how I have been attempting to cope with the situation as well as plans for the future.

Linda and I have been travelling extensively for the last few years to places like Mexico, Alaska, Hawaii, Montreal, and China.  Last year we were at the NCAA Final Four basketball tournament in Dallas and the Masters golf tournament in Augusta (a lifetime dream).  We have also continued to make presentations to PD support groups periodically in the Denver area and participate in the Parkinson Disease Foundation (PDF) Parkinson's Advocates in Research (PAIR) program.  Exciting new developments have included the opportunity to provide "patient perspective" to the planning and grant submission for a PD palliative care clinical research study at the University of Colorado Hospital and development of a personal PD resource website (www.shakypawsgrampa.com).

In spite of all this, it has become clear to me that the time is right to set new goals that may improve my health and quality of life.  In the process, I would send a positive message to my family, showing them that I am still willing and able to be proactive in order to maximize my time with them.  While I accept that, ultimately, this in in God's Hands, I have good reason to believe that my efforts could well make a difference. Beyond that, I may also have a chance to motivate fellow PWPs and provide feedback that could be useful to the PD research community.

I have started this past week on a 12-week program with my PCP that is designed to allow me to lose 25 pounds.  The program includes emphasis on nutrition and exercise.  I may provide more details down the road, but for now let it suffice to say that I am committing myself to this plan and am determined to see it through.

It has long been clear to me that we (PWPs & Care Partners) are all in this together.  I have seen and felt this time and again.  We are a source of love, support, and encouragement to each other.  With that in mind, I would covet any words of support you would care to post at the bottom of this page or on my Parkinson's disease facebook page (www.facebook.com/carinaandhercarepartnergramma).

Another PDF reprint regarding new drug therapy Duopa

The Parkinson's Disease Foundation (PDF) alerts the community that a medication called DUOPATM, gel formulation of carbidopa/levodopa, has been approved by the US Food and Drug Administration (FDA) for the treatment of advanced Parkinson's disease. This is the second drug approved by the FDA for Parkinson’s disease this week. With your support, we are funding research to solve, treat and end Parkinson's. FDA Approves DUOPATM: What Does It Mean? DUOPATM, a gel formulation of the drug carbidopa/levodopa that is delivered directly to the small intestine through a surgically-placed tube, has been approved by the US Food and Drug Administration (FDA) for the treatment of motor fluctuations in advanced Parkinson's disease. The approval was announced yesterday by the drug’s manufacturer, AbbVie, Inc. This new drug is a formulation of the gold-standard treatment carbidopa/levodopa. The manufacturer states that DUOPATM uses the same active ingredients as orally-administered carbidopa/levodopa, but is designed to improve absorption and reduce off-times for people with advanced Parkinson's disease by delivering the drug directly into the small intestine. DUOPATM is delivered for 16 continuous hours every day by a pump through a tube that requires a small surgically-placed hole in the stomach. What does it mean? According to Kathleen M. Shannon, M.D., Chair of PDF's Medical Policy Committee, this is a welcome advance for a subset of people living with advanced Parkinson’s disease. Learn more by watching our short video and reading our official statement.  View our Video  Read our Statement Parkinson's Helpline For additional information about medications for Parkinson’s disease, please contact PDF's HelpLine at (800) 457-6676 or info@pdf.org. Thank you for your support, James Beck, Ph.D., Vice President of Scientific Affairs, Parkinson’s Disease Foundation Our Commitment to Efficiency Thanks to our low administrative costs, 80% of our budget goes directly to Parkinson’s research, education and advocacy. Make a donation today to support our mission. Thank you for your generosity.

PDF Reprint regarding RYTARY extended release sinemet drug

This new drug is something that PWPs have heard about and have been anticipating for the last year.  I am going to discuss it with my doctor this month.  In my case, I am hoping this will allow me to sleep through the night without having to worry about taking sinemet every four hours, which I currently have to do to avoid feeling "really lousy" in the morning.  I will be interested to learn about how long this "extended release" drug may be effective for me, possible side effects, cost and more.  I would encourage all interested PWPs to discuss with their doctors! The Parkinson’s Disease Foundation (PDF) alerts the community that RYTARYTM, an extended release formulation of carbidopa/levodopa, has been approved by the US Food and Drug Administration (FDA) for the treatment of Parkinson's disease.

With your support, we are funding research to solve, treat and end Parkinson’s.

FDA Approves RYTARY: What Does It Mean? PDF alerts the community that RYTARYTM, an extended release formulation of carbidopa/levodopa, has been approved by the US Food and Drug Administration (FDA) for the treatment of Parkinson's disease. The approval was announced on Thursday by the drug’s manufacturer, Impax Pharmaceuticals. Carbidopa/levodopa remains the gold-standard for easing motor symptoms. But as PD advances, the drug becomes effective for shorter time periods. This "wearing off" leads to a worsening of motor symptoms. The manufacturer of RYTARYTM states that the drug is designed to reduce these “off times” in people with Parkinson’s disease. What does it mean? See our team’s take.  Read our Statement  View our Video Parkinson's Helpline For additional information about medications for Parkinson’s disease, please contact PDF's HelpLine at (800) 457-6676 or info@pdf.org. Thank you for your support, James Beck, Ph.D., Vice President of Scientific Affairs, Parkinson’s Disease Foundation Our Commitment to Efficiency Thanks to our low administrative costs, 80% of our budget goes directly to Parkinson’s research, education and advocacy. Make a donation today to support our mission. Thank you for your generosity.