Thursday, February 19, 2015

Change of Direction Progress Report 2

Image result for weight loss pictures

Since I made a commitment to the world (what was I thinking?) to follow through with this lifestyle & wellness program, here is an update on my progress.  

It has been about 3 weeks since my first progress report and 5 weeks since I started.  I have lost 18 pounds including 13 pounds of FAT (yuck!).  On the not so positive side, I have lost about 2.5 pounds of muscle mass, so I need to work on reversing that trend, as muscle consumes calories even at rest.  Also important is water % which has risen 2.5% from the start.

I think it is worth noting that we were on vacation in Florida for 12 days of the last 3 weeks.  In the past, I would have used this opportunity to forget about the diet and "run amok" (a term we use in our family for eating whatever we feel like).  This time, I had a plan and Linda to help me make it happen.  She packed the shake powder in plastic bags and we took our smoothie machine to make them.  I did go off the wagon a couple times in restaurants, but was able to "stay the course" overall.  Bike rides and walks on the beach provided the exercise I needed.

I am 10 pounds from the goal I set to reach after 90 days and I have not reached the halfway point.  Since it is not a good idea to lose too much too fast, I may make some minor adjustments.  However, if, strike that WHEN I reach my goal I will set a new one.

It is an oversight that I have not mentioned all the associated health benefits that I hope to realize from these changes, besides feeling better and having more energy.  I have been taking blood pressure and anti-cholesterol meds for over 30 years.  I would like to get off these altogether.  Statins (for cholesterol reduction) in particular have come under heavy fire in recent years.  Additionally, I started using a CPAP to avoid sleep apnea (which, left untreated, can kill you) about 15 years ago.  So I go to bed looking like a deep sea diver and sounding like Darth Vader (just ask my grandkids).  I have a realistic chance to leave that behind as well.

I went into this hoping to put a dent in my cognitive/memory problems.  So far, I have not seen improvement but hope that will change over time.

Monday, February 2, 2015

Parkinson's Research Will Find A Cure

  •                         Living Proof

Linda and I watched a wonderful dvd movie from our library called Living Proof (http://blog.nola.com/davewalker/2008/06/harry_connick_blog_take_w_audi.html) about Dr. Denny Slamon (played by Harry Connick, Jr.), a real life UCLA cancer researcher.  Dr. Slamon's amazing commitment and persistence against all odds resulted in a revolutionary drug called Herceptin that has saved the lives of thousands of women with breast cancer.  His story is extremely inspirational and a source of hope for patients with life-threatening diseases.

But how frustrating it was to witness what Dr. Slamon had to go through to get support for his drug, pay for clinical trials, and, finally (after many years during which lives were tragically lost that could have been saved).  This reminded me that PWPs have to do everything we can to support the research process at EVERY stage, including the political work that lays the groundwork for the actual research (a BIG thank you goes to all PAN members!) and financial support to speed new drugs to market (thanks of all organizations who contribute, particularly the Michael J. Fox Foundation), as well as the actual research!


I am excited about and have registered to investigate participation in phase 2 research being planned by Dr. Charbel Moussa at Georgetown University to study the effects of a drug (nilotinib) used to treat leukemia patients . Preliminary research using animal models has shown that this drug "provides a novel strategy in treating neurodegenerative diseases that feature abnormal buildup of such proteins involved in Parkinson’s, Alzheimer’s disease, amyotrophic lateral sclerosis (ALS), frontotemporal dementia, Huntington disease and Lewy body dementia, among others." (http://www.georgetown.edu/news/cancer-drug-parkinsons-study.html)


Linda read an article in a magazine inserted into the Sunday Denver Post about this study the day after we watched Living Proof, made the connection, and showed it to me.  I googled information about it and emailed Dr. Moussa.  He replied the next day, telling me I could register to participate, which I did.  If you watch the movie, you will see that a variety of people learned about the Herceptin trials in ways that defy explanation.  Some of those initial participants went on to have their conditions improved, sometimes substantially, and at least one experienced total remission of her cancer.


I am daring to hope that I might be included in this study.  If so, I might benefit with regard to PD and/or mild cognitive impairment and/or help develop treatments that will make a difference in the lives of others.  Hope is a good thing.

Update: It appears that I do not meet one of the inclusion requirements (https://foxtrialfinder.michaeljfox.org/trial/3974/)

Saturday, January 31, 2015

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.

Friday, January 30, 2015

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!




Thursday, January 29, 2015

Change of Direction Progress Report

Image result for weight loss pictures



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.  

Sunday, January 18, 2015

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).



Wednesday, January 14, 2015

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.
Parkinson's Disease Foundation: Solve. Treat. End.
With your support, we are funding research to solve, treat and end Parkinson's.
Support Research
Dr. Beck Video Pic
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
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
80 Percent
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.

Sunday, January 11, 2015

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.
Parkinson's Disease Foundation: Solve. Treat. End.
With your support, we are funding research to solve, treat and end Parkinson’s.
Support Research
Support Research
Pic
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
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
80 Percent
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.

Saturday, December 13, 2014

PD and Gastrointestinal Issues

I have written a previous article on autonomic dysfunction related to PD which includes gastrointestinal (GI) issues.  None of the PD symptoms are fun to talk about, but this is one of the least "savory" but most important in terms of impact on quality of life.  

It is extremely common for PWPs to have problems with constipation.  For me personally, I would rank this one right up there with getting a good nights sleep in terms of it's potential to impact the way I feel on a daily basis.  I was diagnosed early in 2008 and mild constipation became noticeable within the first year or so.  I managed it well enough with prunes, a laxative called Prunelax, adding fiber to my diet, and doing my best to stay hydrated (very important).  For the last six months or so, I have noticed that I feel bloated pretty much all the time to the point where I feel like I have swallowed a balloon even when I haven't eaten much.

The ways in which Parkinson’s disease can increase the risk of constipation include:
  • Lack of dopamine (a neurotransmitter) in the brain – impairs control of muscle movement throughout the body. Bowel muscles can become slow and rigid.
  • Uncoordinated bowel motions – the bowel muscles may be weak and unable to contract, or they may clench instead of relaxing when trying to pass a motion.
My movement disorder neurologist came up with a game plan to try to deal with this problem.  He started by prescribing carbidopa (the ingredient in Sinemet, which is a combination of carbidopa and levodopa, that enables the levodopa to cross the blood brain barrier in order to control many PD symptoms).  Apparently, there was a chance that this might help with my GI problems.  After about a week, I didn't notice and improvement plus I was experiencing significant dizziness and fatigue, so I stopped taking it.  He had also recommended taking Gas-X to help eliminate gas and reduce bloating. Unfortunately, that hasn't really helped either.

The next step was a prescription for a drug named domperidone (sounds much like the expensive champagne), which is described on the Mayo Clinic website as "a medicine that increases the movements or contractions of the stomach and bowel."  This drug is not available in the U.S., but is available online from Canadian pharmacies (prescription required).  This medication sounds promising.  I have it on order and will share its effectiveness (or lack thereof) once I have taken it.  Meanwhile, I thought this info was important enough to share with the PD community.

Update 12/28: I have been taking the domperidone for only 24 hours, but it is already helping a lot!  If interested, ask your doctor about it.

Tuesday, December 9, 2014

A Christmas Wish


Linda and I met the amazing and talented illustrator for my Shaky Paws children's books 

(www.shakypawsgrampa.com), Alison Paolini, at her home in Paradise, CA in October.

Alison is a 78 year old PWP and accomplished artist. She will be moving to Canoga Park

just north of LA in the near future to live with one of her daughters. I am trying to help

Alison with her wish to have her fantastic collection of paintings (oil, water color,

sketches, framed & unframed, diverse subjects) sold to raise money for Parkinson's

research! A friend will be transporting the paintings to LA in December.  I hope all my 

PD friends will share this with their networks in LA. What is needed is  to put 

together some type of PD (or other-like a hospital) event in the LA area or tie into an 

existing one. 


I am going to try to channel Mickey Rooney so that all "us kids" can work together to find 

a way to make Alison's wish come true!  If I were Mickey, I would have a great idea for a

show and pull together the resources to make it happen.  This is where I need help. 

Anyone connected with the "PD world" in the LA area or who knows anyone in the 

LA area that might have ideas, connections, or be willing to help put together such 

an event, please email me at kirk1248@comcast.net.