PRACTICAL IDEAS FOR DAILY LIVING WITH PARKINSON'S

I have noticed that fellow PWPs sometimes ask questions about some issue they are dealing with or share information to help others.  Just last week, I participated in this type of conversation with my local PD support group and I think it was helpful for all of us.  Speaking for myself, there are a few things that I have discovered that I have found to be very helpful.  I am sure the same is true of fellow PWPs.  It occurred to me that I need to share these things with the idea that they might be helpful to others as well as me.  I would encourage my PD "brothers and sisters" to do the same.  We are all in this together!  

Before I start, I will mention the obvious caveat which is that I am not a doctor, nor are most of my PD comrades, so appropriate caution should be taken in putting these ideas into practice.  That said, there is a great deal of "trial and error" in PD treatment so it makes sense to try different ideas to improve our quality of life.

Pain

I am just beginning my sixth year since my PD diagnosis.  I have read that pain is common symptom that crops up over time, especially in the feet and legs.  I have mild peripheral neuropathy in those areas as well as a Morton's neuroma (not to be confused with the pot pie) in one of my toes.  I have also experienced pain in my left knee that was compounded during our recent trip to China.  

I was at a park in Shanghai in a "bumper car" with my six year old grandson.  I was riding shotgun since he (obviously) wanted to drive. However, his short legs could not reach the accelerator so I stretched my left leg over to do that. This arrangement worked well enough for a time as we bumped our competitors.  But then Bryson spotted a target further away and headed straight for them.  Since I had my foot on the accelerator, I could have slowed down to lessen the impact, but I lacked the presence of mind to do that.  As a result, we were at full ramming speed when we struck our unsuspecting target broadside.  Bryson screamed with delight while I winced in pain as my left knee hit metal.  Needless to say, I used the accelerator much more judiciously for the remainder of our ride.  Since then I have awoken periodically during the night to significant pain in my left knee.

A year earlier, Linda and I were at a street market in Palm Desert, CA (we get around) where she spotted sample packets for a product named "Topricin" foot therapy cream, a topical cream for pain relief.  She grabbed a few which was very fortunate as I began to wake up to intense episodes of pain in my "pot pie toe".  For those of you who have experienced gout, this was in the same ballpark.  Anyway, she was able to locate these samples and I gave it a try. I am happy to say that my pain subsided within moments after application.  I have been using it for the toe pain, which pays me a visit multiple times each week, ever since.

Returning to our China visit, after the bumper car incident I began waking up to pain in my left knee that was much like the previously mentioned toe pain. In desperation, I applied some of the "toe cream" to my knee and the pain subsided!  Since then, my "toe cream" supply was running low.  I knew I needed to get a new supply before it ran out or I would be "up a creek without a paddle".  I googled "Topricin" and found an assortment of the product on Amazon.  I ended up purchasing two 8 oz. bottles of a generic (not foot-specific) pain relief and healing cream for "relief of joint, nerve, muscle and back pain".  Once I received this new product, I found that it contains ingredients that relieve "pain in the lower back, hip, and spine, pain of impact and falling injuries & contusions to muscles and joints, muscle spasms & night leg cramps, relief of burning pain in hands and feet, relief of sciatic pain and nerve injury pain, and relief of pain from injuries to the knee, shin, and elbow. It further states that it is patented for neuropathy.  I paid about $40 for two 8 oz. bottles.  It has worked for me.

Sleep problems

Getting a good night's sleep is problematic for most PWPs for one reason or another.  A sleep study is something to consider for anyone who has chronic daytime sleepiness (ask your doctor).  I have sleep apnea and have used a CPAP for over ten years.  The sleep issues associated with PD are a different "kettle of fish".  Sleep plays a major role in our quality of life.

I have used foam ear plugs nightly for years to block out much (not all) of the extraneous noise that might wake me up.  These are cheap and can be purchased at WalMart or most drug stores.

Our younger son (the science teacher we visited in China) recommended something he uses.  It is not addictive, like some sleep aids, and is relatively inexpensive.  The product is NutraSpray Melatonin and comes in a 2 fl. oz. spray bottle (1-3 sprays are recommended).  It doesn't "knock me out", but I fall asleep naturally and generally sleep without waking up for longer periods of time, sometimes the whole night.  It is over the counter and is probably available in drug stores.  Check out the contraindications (not be used in conjunction with some other meds) with your pharmacist or doctor.  I bought mine online on Amazon for under $10.

Constipation

This is another common problem for most PWPs that can be serious if not dealt with effectively.  Based on my research, the most important thing to do lessen the risk of constipation is to be sure to drink enough water!  This is huge for so many things that affect how we feel!  Make it a priority!

Now that I've gotten that off my chest (by the way, I am not good about it either-I have met the enemy and it is me, as Pogo would say).  Eat plenty of fiber and blah, blah, blah-you've heard it all.

I take a stool softener called Prunelax (2 tabs nightly).  I also eat 3-5 prunes every morning.  As a result, I am a "regular guy".  The best price I have found is on drugstore.com ($8.99/bottle).  Each bottle contains 60 tabs (a one month supply for me).  You will read that this product is not intended for chronic constipation (which is what PWPs have) unless instructed by a doctor.  My doctor is a aware that I use it.  Check with yours to see if this makes sense for you.

Cognition/Memory

I mention in my book, Window of Opportunity: Living with the reality of Parkinson's and the threat of dementia, that I am finding the combination of the 9.5 mg Exelon patch and Namenda (5 mg) to be very helpful in terms of improving clarity and ability to function.  This is something you will need to research thoroughly and discuss with your doctor if you are experiencing significant problems.

I am adding two more (4/30/14):

Balance

This is a HUGE problem for many PWPs that carries significant risk due to risk of falls and the complications they can create.  I do not have significant balance problem.  I have had two balance-related falls in the last three years, both due to running while playing football and soccer with grandchilren.  In those situations I recognize that when I start to lose my balance it is much harder to recover.  Fortunately, I was on grass (not the kind you smoke, even though we are in Colorado) which cushioned the falls.

I use the poles as a "safety net" when walking longer distances and also to help me propel myself at a faster rate when walking for exercise.  I inherited a very nice set of Alpine "anti-shock" collapsing poles from a dear friend and fellow PWP who is no longer with us.  I used them on our recent trip to see the Master's golf tournament.  When I went through security, they asked me what they were as they had never seen them before.  I was also a curiosity in China (for more reason than one) walking around with these poles.  I used them last October at the World PD Congress in Montreal.  They are a three piece design that collapse to a length of about 15 inches, so they are easy to travel with.

I have seen videos of how these poles can assist people with more serious balance issues with standing up from a chair, safely negotiating a ramp, going up and down hills, getting out of a car, and much more.  It is much safer than using a cane and more effective.  It is an alternative that I highly recommend for consideration.  They are available at Walmart and Target for $30.  Many others are available online.  

Taking pills on a schedule

I use a small pill timer from Walgreens to remind me to take my Sinemet every four hours.  If I happen to leave it at home, I am likely to forget and don't realize until I start to feel symptoms (headache, dizziness, stiffness, slowness, etc.).  I have learned that, if I get off schedule it takes quite a while to get back on so I end up feeling lousy for the rest of the day.  

The timer I get is designed to stick on the top of a pill container, is white, and can be adjusted in hourly increments.  The old model (Dose-Alert Pill Reminder) worked just fine, but they replaced it with a more expensive model with voice prompts in addition to beeping.  It is still well worth it (under $20 and lasts for months).  I know there other strategies for this same purpose, like watches with timers. or timers on iphones, etc.  I am not very techy plus anything complicated throws me for a loop.  This is a system I have gotten used to that I can manage.


I hope this information is helpful!

Notes from the Twilight Zone: I am not alone

More Bad News for Boomers

In “Have You Lost Your Mind?” (p. 32 of this weeks New Yorker magazine), Michael Kinsley explores the possible mental effects of Parkinson’s disease, a condition he was diagnosed with twenty years ago. Kinsley writes that following his diagnosis, after several weeks of quietly freaking out, “it occurred to me to wonder whether it would affect my brain.” Kinsley asked his neurologist. “He answered carefully, ‘Well, after a few years you may lose your edge,’ ” Kinsley writes. Kinsley continues, “My edge is how I make a living. More than that: my edge is my claim on the world. It’s why people are my friends, why they invite me over for dinner, perhaps why they marry me.” In the two decades since Kinsley’s diagnosis—during which his physical symptoms have advanced quite slowly—“there has been a revolution in thinking” about Parkinson’s disease. While Parkinson’s has “always been classified as a ‘movement disorder,’ ” neurologists now believe that deficits in cognition and memory can predate the physical symptoms that lead to diagnosis of the disease. Wondering whether he might be experiencing the mental effects without being aware of it, Kinsley signed up for a cognitive assessment. “My motive was part scientific inquiry, part hypochondria, and part the journalist’s reaction to any interesting development—‘This would make a great piece,’ ” Kinsley writes. His results in the test over all were “not bad, but not great.” He’d been “off the charts” when he took a similar assessment, nearly a decade before. “This time, I did poorly in exactly the categories where someone who’s had Parkinson’s for twenty years would be expected to do poorly,” Kinsley writes.  “Parkinson’s is a degenerative disease, so things are not likely to get better.” But, he writes, they’re really not so bad now. “How bad could a symptom be if it takes a five-hour test to find it?” Please see this link: http://nyr.kr/1hTItVtF

For those who follow my blog, my interest in this article will be obvious.  Many of the comments in this article resonate with the message in my new Window of Opportunity book.  

I have been thinking about why I wrote this book, which I have tried to explain previously.  It certainly is not meant to create anxiety for PWP's, care partners or their families.  The fact is that most of them are already aware of PD-related cognition issues, either because they have read about them or have experienced them, and are, I believe, interested in knowing more.  I hope that the book sheds light on this discussion that it will be interesting/helpful.  Additionally, by sharing how Linda and I have chosen to deal with these problems, it will give others ideas about how they can approach their own challenges and see that it is possible to continue a happy, productive, and fulfilling life.

I was grateful to receive the following quote from Dr. Michael Okun, Professor of Neurology at University of Florida regarding my book:

"This book by Kirk Hall with a forward by Benzi Kluger, M.D. offers a real-world honest and helpful window into the life of a Parkinson's disease patient who is experiencing cognitive challenges.  There are many useful tips, and also many great stories that will provide comfort to both Parkinson's disease patients and caregivers.  This is just terrific and a really important contribution to the literature.   I highly recommend the book."

Clinical Research Forum Announcement

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Learn more about the state of Parkinson’s research today, the different types of trials and how your loved ones can participate. Speak with some of the most active Principal Investigators in Colorado about their research. Ask questions of Research Coordinators about their ongoing trials. Talk to others who have participated in trials about their experiences. Decide to participate. Make a difference.Clinical trials and studies play a critical role in the development of new and better medicines. Yet, enrollment of patients is one of the top challenges clinical researchers face. Slow and/or low enrollment hinders the research process and deters potential funders from investing in research. Many clinical trials fail to recruit a single subject. Only one in 100 people with Parkinson’s takes part in a trial. We can do better. When: May 3, 8:30am-12:300pm Where: Mile Hi Church, 9077 W. Alameda Ave., Lakewood, CO 80226 What:  8:30      Registration • Exhibits 9:00      Welcome                     Cheryl Siefert, MNM, Executive Director, Parkinson Association of the Rockies 9:10      Parkinson’s Research: Where We Are Today                      Rajeev Kumar, MD, Medical Director, Rocky Mountain Movement Disorders Center 9:25      Panel Discussion of Cutting-Edge Research                      Curt Freed, MD, Professor, Division of Pharmacology and Toxicology, University of Colorado Denver                      Benzi Kluger, MD, MS, Assistant Professor, Department of Neurology, University of Colorado Denver                      Rajeev Kumar, MD, Medical Director, Rocky Mountain Movement Disorders Center 10:20      Movement Break                     Meredith Roberts, PT, DPT, Outpatient Rehab Manager, Life Care Center of Aurora 10:40      Rehabilitation and Integrative Medicine Research                     John Dean, MS, CCC-SLP, Parkinson’s Program Coordinator, Life Care Centers                      of America                      Cynthia McRae, PhD, Professor, Morgridge College of Education, University of Denver 11:10      Panel Discussion on Deep Brain Stimulation Research                     Aviva Abosch, MD, PhD, Director of Research and Professor, Departmentof Neurosurgery, University of Colorado Denver                     Monique L. Giroux, MD, Medical Director and CEO, Movement and Neuroperformance Center of Colorado                     Olga Klepitskaya, MD, Assistant Professor, Department of Neurology, University of Colorado Denver 12:15      Research Fair • Exhibits Event is FREE, but registration is required In Collaboratiaon with:                    Special Thanks to:
Location : Mile Hi Church, 9077 W. Alameda Ave., Lakewood, CO 80226 Contact : info@parkinsonrockies.org This email address is being protected from spambots. You need JavaScript enabled to view it. or 303-830-1839

Window of Opportunity book now available

Window of Opportunity: Living with the reality of Parkinson's and the threat of dementia is now available as a book.  Order in book format at http://www.pygmybooks.com/BuyBooks.html (page 2) or http://www.amazon.com/Window-Opportunity-Reality-Parkinsons-Dementia/dp/0984206345/ref=tmm_pap_title_0. Order in ebook format at http://www.amazon.com/WINDOW-OPPORTUNITY-reality-Parkinsons-dementia-ebook/dp/B00JG577PG/ref=tmm_kin_swatch_0?_encoding=UTF8&sr=&qid=.  

A webinar is planned for Wednesday, June 4, 2014 at 2 pm Eastern on Webex.  Registration and access information will be available on the Lewy Body Dementia Association (LBDA) website (www.lbda.org) in May.  The goal of the webinar is to give Lewy body dementia (LBD), Parkinson's patients (PWPs) and their caregivers the opportunity to hear first hand from Alexander Dreier, who has been diagnosed with LBD, and his wife, Olivia, about what is like for them and how they deal with this diagnosis.  My wife, Linda, and I will also participate as representatives of the "PD world" and how we are dealing with my mild cognitive impairment (MCI) diagnosis, as MCI is often a precursor to Lewy body dementia (LBD).  There will be an opportunity to ask questions. 

My book tells in detail of our journey with the cognitive issues that are common with PD, my MCI diagnosis, what I have learned about PD dementia (which most often falls into the LBD category) and plans for the future.  

I had the pleasure of meeting Helen and James Whitworth (Jim was one of the founders of the LBDA), authors of the best seller A Caregivers Guide to Lewy Body Dementia (available on amazon.com) at the recent Keystone PD Conference.  They will be publishing a new book in the near future that sheds additional light on LBD and insights that will be of interest to anyone concerned about LBD, including remarks specifically addressed to PWPs and their caregivers.  They have reviewed my book and made these comments:

"When Jim and I met Kirk Hall at a Parkinson’s conference in Colorado, we were impressed with his obvious intelligence and knowledge. When I read his book, that was confirmed, but most of all, I was impressed with his courage and determination. Like others facing the possibility of dementia, he found himself alone. Even his wife could see only the positives at first. Yet, he motored on, seeking a diagnosis that fit his symptoms. In the meantime, Kirk’s book shows that he did all of the physical things that help to keep dementia at bay—things like exercising, yoga, eating right and decreasing stress. But he did more. He improved his quality of life and made his days worth living. He moved closer to his grandchildren, increased his focus on spirituality and reached out to others, teaching and sharing. And then he started writing, joining that small group of men like Dr. Thomas Graboys, Rick Phelps and Charles Schneider who tell about dementia from the inside out. As caregivers, Jim and I can only write about dementia from the outside in. We join all dementia caregivers in our gratefulness to men like Kirk who give of their very soul as they tell us what it is like to feel dementia encroaching. Thank you, Kirk, for your heartfelt story. We recommend it to not only all PD and LBD caregivers, but to the medical community as well."

Helen & James Whitworth