Change of Direction Progress Report 4

As promised, here is another update on my wellness program.

As of 3/19/15 I had lost another pound, now down 24 pounds in eight weeks.  My

fat weight was down 1.5 pounds and water weight up 1/2 pound, both good things.  My muscle weight was also down 1/2 pound, not a good thing, but my exercise has kept muscle mass loss to a minimum, so the doctor was pleased.

The good news overall is that I am 4 pounds from my 12-week goal with four weeks to go.  The good news for this last two weeks is that I was in Chicago for half of that time.  Anyone who has been to Chicago knows that the food there is great!  Luckily, the temperatures were up to the 50-60 range, so we were able to do a good bit of walking from our apartment in the loop area.  We walked across the street to Millennium Park, up north on Michigan a mile or so to the John Hancock Building (where we had lunch on the 95th floor, one of my favorites), south more like 2 miles to the Shedd Aquarium and northeast about a mile to the Navy Pier.  This helped offset meals at Greek Town, the JH lunch, a Irish pub lunch, and a dinner at Harry Carry's sports bar.  I enjoyed each of these, but was able to make choices that limited the damage, not throwing "caution to the wind" as I have done in the past.

Now that we are back home, it is easier because I am back into my routine.  But I am not concerned about life after this program because I think I have a different mindset and enough knowledge to make good decisions.

I have set a new goal for the 12-week period another five pounds lower, which the doctor feels will get me to a desirable fat % where I should level off.  So far so good!  I don't look like I have lost as much weight as I have due to abdominal bloating that result from gastrointestinal changes in the last year, but I feel good.  Hopefully it is obvious which is the before picture.

                                       

COLORADO COMMUNITY CONFERENCE 2015

COLORADO COMMUNITY CONFERENCE The conference, brought to you by the Parkinson Association of the Rockies, is Colorado's premier conference focused on Parkinson's research and medical treatments. Conference attendees can expect to be educated, through seminars and panel discussions, on current research, medications and treatments, as well as tips and tricks to thrive with Parkinson's. Conference also includes Clinical Research Resource Fair for conference participants to speak directly with clinicians and physicians who currently have open research trials as well as individuals who have participated in past and/or present clinical research trials. WHO SHOULD ATTEND Those serving the Parkinson community, individuals living with the disease and their care partners. FREE TO ATTEND - Registration is Required PLEASE COME PREPARED: All conference participants, speakers and volunteers will be provided a box lunch. Coffee will also be available during registration. Breakfast or Snacks will NOT be provided prior to lunch. Please make sure you come prepared for your personal needs for meals/snacks for the morning portion of the conference. WHEN & WHERE Friday, April 10, 2015 Crowne Plaza, DIA Click for information on Conference Center & for directions CONTACT FOR MORE INFO Info@parkinsonrockies.org | (303) 830-1839 CONFERENCE SPONSORS Visit 'View Our Sponsors' link in the menu for a complete list of Colorado Community Conference Sponsors. Sponsorship Opportunities: Email Kari Buchanan: KBuchanan@ParkinsonRockies.org

Event Location:

Crowne Plaza, DIA 15500 East 40th Ave. Denver, CO 80239 (303) 371-9494 Click for directions and map

Event Schedule:

Colorado Community Conference Visit 'Conference Schedule' (COMING SOON) in the menu above on the left for a more detailed schedule and information on guest presenters. 4/10/2015 Friday, April 10 4/10/2015 8:45am Conference Check-in 4/10/2015 9:15am WELCOME 4/10/2015 9:20am SEMINAR I Benefits of Research Stuart Isaacson, MD 4/10/2015 9:55am SEMINAR II Benzi Kluger, MD 4/10/2015 10:35am Stretch Break Erica DeMarch, PT 4/10/2015 10:55am RESEARCH: ENVIRONMENTAL IMPACTS What's Current: Updates on Ground Water & Stem Cells Research Curt Freed, MD Katherine James, PhD 4/10/2015 11:55am Lunch and Resource Fairs Visit Clinical Reaearch Resource Fair and Conference Exhibitors 4/10/2015 12:40pm RESEARCH: SCIENTIFIC MATTERS Rajeev Kumar, MD 4/10/2015 1:40pm Stretch Break Opportunity to Visit Conference Exhibitors 4/10/2015 1:50pm RESEARCH: PHYSICAL EFFECTS Margaret Schenkman, PT, PhD 4/10/2015 2:50pm SEMINAR III 4/10/2015 3:20pm CONFERENCE CLOSING 4/10/2015

Fees:

Conference Participant: No Fees FREE to Attend - Registration is Required

Change of Direction Progess Report 3

I am not trying to belabor this topic by providing these updates.  I am hoping that by sharing these details, others in my position will get a better idea of how to approach the issue of weight loss, keeping in mind that what I am really attempting to accomplish is overall wellness (via a program combining weight loss, exercise, and nutrition).  For more information or to locate a participating doctor in your area visit https://www.centerformedicalweightloss.com/.

Just in case I have not made this clear, the basic philosophy of the program I am using is to consume less calories on a daily/weekly basis than my metabolism.  Including the protein shakes the program provides, I had been consuming about 1250 calories per day (roughly half of "typical" metabolism, which I am trying to ramp up with increased exercise).  

Because I was concerned about losing too much too fast (not a good thing), I "loosened the reins" a bit to about 1400 calories per day, including a "serving" of red wine (4 oz.) in the evening.  My report today at the doctor's office indicated that I had lost an additional five pounds (now 23.5 lbs. total), three pounds of which was fat so I am still losing weight but at a decreased rate.  I am only five pounds from the goal I had set.

It definitely feels good to have lost this weight.  I am able to wear clothes that I haven't worn for years, so I have a lot of "new" wardrobe choices available to me.  I do have more energy in spite of the chronic fatigue that is part of my PD "package".  For example, I filled in for my son at a "father-daughter" dance recently (she is eight years old) and danced (more or less) for two hours.  I had a great time!  It always feels good to reach an important goal I have set for myself.

I realize now that the length of the program is important.  It is giving me time to "reprogram" myself.  I am developing new habits in terms of using the calorie book (particularly helpful in restaurants), portion size, and desirable level of the appropriate exercise.  I have said for many years that I am most comfortable making "informed choices".  I plan to put what I have learned into practice once the program is completed.  I have spent too many years "in the dark" not really wanting to know what I didn't know.  Now I know.  Ignorance,as it turns out, is NOT bliss.  OK, I'm getting carried away now, but you get the point.

This is not to say that I intend to never have another dessert or pastry, but when I do it will be an informed choice and will not lead to abandonment of the new habits I have only started to ingrain.  Also, this is a choice I have made for myself and I do not plan to become a "wellness evangelist".  That said, I will glad to discuss this subject with anyone who is interested.

All this talk is nice, but the real test will be my ability to stay on this path long term.  Once again, I am committed to doing this.

PD ExpertBriefing: Vision Symptoms of PD

I am reprinting the following from PDF to help extend it's reach.  I think this will be interesting to many of my readers.  Use this link to register: http://event.netbriefings.com/event/pdeb/Live/vision/register.html

Dear Friend of PDF: How does Parkinson's disease affect vision? Find out by joining PDF and Dr. Daniel Gold for a one-hour PD ExpertBriefing on Tuesday, March 3 at 1:00 PM ET.

More Than Meets the Eye: Vision Symptoms of PD

Who: Daniel Gold, D.O., is Assistant Professor of Neurology, Ophthalmology, Otolaryngology – Head & Neck Surgery, and Neurosurgery at The Johns Hopkins School of Medicine in Baltimore, MD. How to Attend: Sign up here to join online or by phone. Please keep your confirmation email, which has instructions for joining the day of the live seminar. Phone participants will receive seminar slides by mail, with a unique toll-free number to use the day of the seminar. CEUs: Are you a health care professional seeking continuing education units? CEUs are managed through PDF's sponsorship of the American Society on Aging. You will receive a link to apply for CEUs within several days of the LIVE seminar and will have up until 30 days to view and apply (a recording will be posted one week after the live event). An additional 30 days will be needed to process your application. Learn More and Sign Up This series has been made possible by an educational grant from AbbVie, Inc.     Event Info When: Tuesday, March 3, 1:00 PM - 2:00 PM ET Where: Online or by Phone Will you attend?   Yes       No       Maybe  RSVP Now Dr. Gold is a neurologist specializing in neuro-ophthalmology. In his clinical practice, he cares for individuals who experience vision symptoms related to brain diseases such as Parkinson’s disease.  RSVP Now

Change of Direction Progress Report 2

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.

Parkinson's Research Will Find A Cure

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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/)

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.