A Good Day

12/8/16

It is early December.  We just got back from Arizona last week so that we could participate in our oldest grandson’s 13^th birthday party.  The party was for Carson, the subject of my first children’s book Carson And His Shaky Paws Grampa (he was seven when the book was written).  Where has the time gone?

Linda and I have been working on getting our Colorado home ready inside and out for Christmas.  We have lots of decorations, some of which we have had for many years from the time when our boys (now in their 40’s) were growing up.  I took care of the outside lights and Linda did most of the inside.  Last night we worked together on decorating the tree.  We take our time doing this so we can enjoy the memories associated with the ornaments.  Some of them the boys actually made when they were little, some are associated with family vacations, some feature our favorite sports teams, some are in memory of family members no longer with us, and many are connected to our grandchildren (we have six-3 of each ages 9-13).  Places of honor on the tree are reserved for themes that we value like faith, peace, love, family, and hope.

All this was happening in a context of memory “events” that had been increasing in frequency.   I have not been able to keep track of what is on our schedule each day or even what day it is many times.  I seem incapable of remembering names of people unless I know them very well and have frequent contact.  Complex problem solving has been an ongoing problem.  There are many examples, but I can’t remember what they are.  This is frustrating and, sometimes, very discouraging for me.  I can tell that Linda is concerned as well.  This is especially hard to deal with at this time of year when we want to enjoy “living in the moment”.

This sets the scene for what happened earlier yesterday.  I had ordered one of the new “Echo” products from Amazon.  We heard about it from friends and got to see and hear one in action during Carson’s birthday party (my older son, Kevin, had ordered one).  It was very unlike me to take this leap as I have avoiding getting involved with any of the latest technology gadgets (we still use the old style flip cellular phone).  In this case, I was captivated by the ability to access any music I wanted so quickly and easily.  To make a long story shorter, I was actually able to get it set up and operating (we got a 30-day Amazon Prime trial that gave us access to lots of music, movies, and much more that I will try to absorb some other time).  I did run into a problem.  In order to hear music, you have to say “Alexa, play ____________”.  It works beautifully, but I kept forgetting what her (Alexa) name was.  I have since come up with an association that helps me remember.

Another challenge was facing me.  We had been watching movies on our 55” Visio TV home theater system the previous night when the sound went out on the sound bar.  Linda and I had tried everything we could think of to fix it to no avail.  So I called Vizio customer service to see if they could help.  It took patience on the part of the rep and perseverance at my end, but he was able to talk me through the steps to reset the sound bar and IT WORKED!  At this point, I was feeling pretty proud of myself.

With a new sense of self-confidence, I drove to our local Ace Hardware to see if I could find a string of lights to replace a defective one that I had put over the garage door.  Not a big deal but I certainly got “sticker shock” from the cost of the LED products!  Anyway, I had to get the right length and pick the right intensity to match my other conventional lights.  I put it up when I got home and it was perfect.  In fact, when I looked at the whole set-up (including a lighted garland over the front door, two wreaths and a lighted garland on the front window, the new lights over the garage door, and our 12” blue spruce with a combination of white and colored lights, it looked really good!  In fact, I think it is the best I have ever done at this house.

That evening, when Linda and I finished decorating the tree, I built a fire in our (real wood burning) fireplace and we had a glass of wine.  After a while, things took a romantic turn right there by the fireplace with Alexa playing Enya tunes in the background.  It was a good day.

Parkinson’s and Inertia

5/29/18

Some days it is hard to get ourselves to “take that first step” literally and figuratively.  Physically, stiffness, freezing and cramping can make it difficult to initiate movement.  The mental side of things can create an even bigger obstacle.  The “dark side” of PD whispers in our ears, telling us that we are not really up to it and don’t have to get off the couch today.  It can wait until tomorrow.  Or the next day.

We returned from Arizona to Colorado in early April.  I had experienced a series of challenges starting last December that made activity difficult.  I had hernia surgery in early December that forced me to be inactive in order to heal properly.  Later that month, Linda and I both came down with the “flu-like symptoms”, including cough and congestion that seemed to plague almost everyone we knew.  It took six weeks and multiple trips to the doctor to get over that.  Unfortunately, I then developed foot problems which I documented in a previous blog article.  It was around the middle of April when we finally found a solution that has helped.  I was finally able to get up and moving (I was more than ready after four months of relative inactivity).  I was able to ramp up my activity and exercise but was still feeling the effects of my “layoff” when we got back to Colorado.

Since we returned, I have gradually become more energized.  I have been doing a lot of work in my two “garden areas”, including my “meditation garden” adjacent to our back patio.  I started slowly, but became motivated to add some new plants that will give it more of the “English garden” look I wanted.  I also made some changes in the front yard garden and spent time fixing the irrigation systems.  It was challenging (and sometimes frustrating) for me to come up with a plan and then go out and buy plants that would work.  I also bought plants for the back patio and a new fountain to “dress it up” for the summer.  The finishing touch was distributing eight bags of mulch.  It was a lot of work, but I feel very good about it and have been spending time listening to the fountain and reading with Linda by our meditation garden.

I attended our local support group meeting last week.  We were talking with our guest speaker, a dance therapy instructor in our area.  As we talked about the ongoing battle to overcome the urge that many of us experience to remain sedentary, the phrase “a body in motion tends to stay in motion” popped into my mind.  Someone remembered that this was part of Newton’s theory, which I googled when I got home.  Sir Isaac Newton proposed his First Law of Motion, the law of inertia, in 1687: “A body at rest tends to remain at rest. A body in motion tends to stay in motion.” Those of us with PD know this first hand.

The four months I spent recovering have given me a new appreciation for being active, though there are still days that I would rather not.  We all have to continue to find the courage and energy to take that first step.  More often than not, we will be glad we did.

Shaky Paws Grampa Update

I made a difficult decision during the summer of 2019 to discontinue my SPG website as I was scaling back on most of my advocacy activities.  As I approach my 12-year anniversary of my PD diagnosis, I am no longer able to do the things I have enjoyed so much over the years.   My PD focus and priorities these days still includes PD palliative care and Tremble Clefs, but I am spending most of my time "living in the moment" and enjoying my wife and family.

I have re-opened my blogspot site which contains my earlier articles.  The SPG website included all my articles, but I couldn't find a way to move the last half over to this site.  My books are still available on Amazon.

I appreciate the interest that has been shown for my website, blog, PD facebook page and advocacy activities since 2011!

Kirk Hall

January 2, 2020 

NEVER GIVE UP*

6/20/18

I think it is fair to say that my PD “advocacy career” started in 2011, the year I wrote my first PD children’s book, had DBS, and began speaking to support groups and doing media interviews.  My blog, the ongoing “voice” of my advocacy work, was first created late that year.  About five years later, my blog became part of my Shaky Paws Grampa website.

While it was important to me to be honest and transparent when talking about PD, it quickly became apparent that it would be important for me to be a source of encouragement.  “Never give up” became a theme that was consistently communicated by national and regional PD organizations and advocates like me followed suit.  Rightly so.

It has been over ten years since I was first diagnosed.  In hindsight, I know that the symptoms began before that.  Neurological symptoms began around 1992.  So I really don’t know when the “clock starting ticking” and it really doesn’t matter.

I have by no means stopped fighting my personal battle with PD.  That said, the nature of “the battle” has changed over time, as it does with all of us.  While I don’t have a crystal ball, I can truthfully say that, while I continue to fight, I accept and am at peace with whatever lies ahead thanks to PD Palliative Care.  I know I will recognize, with the help of my Palliative Care Clinic at University of Colorado Hospital, when the time has come to stop fighting.  And thanks to the advance planning we have done and will continue to do, my family will understand and support my wishes.

I highly recommend that anyone who has PD or is connected with it in any way in the Denver area make it a priority to learn about the University of Colorado PD Palliative Care program.  Regardless of where you live, ask your movement disorder neurologist where this type of service, which is a relatively new development, is available.  Or contact the Parkinson Foundation for information.

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

•                         

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/)