Kirk's Blog

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Kirk started writing articles for his blog around the time his first book was published (September 2011). Not having any other bright ideas at the time, he adopted the book title as his “brand” for the blog. Over time, Shaky Paws Grampa (SPG) has become his “identity” in the PD world. The good news is that he hasn’t had to fight anybody for it and there was no competition for the web address (understandably).

He didn’t have any clear goals in mind for the blog when he started other than to make his target audience the “PD world”, opting to write about what ever inspired him at the moment. Over time, various themes emerged:

Book or writing-related
PD-related information
Clinical research study advocacy/participation
Cognition issues
Living with PD-personal
PD meeting/conference announcements
SPG speaking engagements, media interviews, and webinars
Calls to action
Personal

Three years later, he has posted 120 articles that have been viewed by readers from over 60 countries around the world.
Kirk Hall

Denver Area PD Community Awareness Events

 

Community Awareness Events

Your participation in the Parkinson Association’s Community Awareness Eventscreates opportunities to provide vital support and services to Coloradoan’s with Parkinson’s. Through these events you also generate general awareness of Parkinson’s disease; which it critically important for all who are serving individuals with Parkinson’s and their families.

Annually, the Parkinson Association hosts signature community awareness events: the Vitality Walk and Party for Parkinson’s events. We also highly encourage you to host an event to raise awareness of Parkinson’s disease while also raising funds for the Parkinson Association’s programs and services. See below for more information.

We are deeply grateful for your participation and for the community partnerships we have for all our Community Awareness Events.

 

Parkinson Association’s Signature Events

walklogoVitality Walk - Enhancing Lives With Every Step

 

15th annual Vitality Walk Save the Date - Sunday, June 4, 2017

 

Two Sites, 2,000 Steps and One Unforgettable Experience

Wash Park, Denver & Sandstone Ranch, Longmont

Annually, on the first Sunday in June, the Parkinson Association hosts its Vitality Walk. Since 2002, this pledge walk has raised significant funds for the Parkinson Association of the Rockies' programs and services and awareness for Parkinson's disease.

Walk the Walk that connects communities and enhances lives... Walk the Vitality Walk.  

14th Annual Vitality Walk Results

Sunday, June 5th, was a gorgeous day for the 14th Annual Vitality Walk. Thank you to the 1,419 registered walkers who participated on the 106 teams in support of the Walk benefitting the Parkinson Association.

Team Power Punch Parkinson's had the largest team with 116 members (some walking in Wash Park in Denver, some walking in Sandstone Ranch in Longmonth and others walking in a Choose to Snooze location at Memorial Park in Colorado Springs)! They were closely followed by Team Longmont Locomotion, which had 99 registered team members. Team Jackson was the top fundraising team, bringing in $48,000. Team CAMP YOUNG was voted by KOOL 105 as 2016's Most Spirited Team due to the tenacity one of their team members showed when crossing the finish line once, twice and even three times was just not enough!

We are deeply grateful for all your support! As of this moment the Vitality Walk has raised over $183,000 to benefit the programs and services provided by the Parkinson Association of the Rockies.

Logo in blue

About Party for Parkinson’s

The Party for Parkinson’s events, benefitting the Parkinson Association of the Rockies’ programs and services, are expected to raise significant funds while generating community awareness for Parkinson’s disease. These events also serve as an opportunity for us to thank our generous supporters. Through their commitment, we have enhanced, improved and created new programs and services to help Coloradoan’s thrive with Parkinson’s.

We look forward to celebrating with you at an upcoming Party for Parkinson's Event!

Party for Parkinson’s - Party in The City

Join us for an evening of festive drinks and delicious food. This event also includes entertainment, games, an auction and is a celebration of accomplishments and recognition to all those who have supported the Parkinson Association.

October 13, 2017

Mile High Station | 2027 Old West Colfax Ave., Denver

6:00pm Cocktails | 7:30pm Dinner & Live Auction

General Admission $150/person 

Party for Parkinson’s - Party with a House (What House? The Gingerbread House!)
Join us in a competition for the best decorated gingerbread house while raising awareness of Parkinson's disease. Event participants will be provided with a pre-built gingerbread house, frosting and candy decorations; and are encouraged to add some flair to their home with personal decorations. This festive event provides an opportunity to welcome the holiday season and spread some cheer while creating memories you'll cherish with your family, friends, co-workers, group/club members and more. Looking for a team-building activity? This event also provides and opportunity to have smaller/exclusive competitions within the overall event competition!

Saturday in December, 2017

Location TBD

$25.00/House (Suggested maximum: four participants/house)

Hosted Community Awareness Events

Sharing Your Story to Make a Difference
Does fundraising sound like a scary thing? Does the thought of asking for a gift make you queasy? Why is that? Many people think that in order to make a difference you have to contribute thousands of dollars. This really isn’t the case. Actually, building community awareness is more important than the dollars raised. Read more about how sharing your story can make a difference. 

Get Our Community Involved in National Parkinson’s Awareness Month
Do you have a restaurant, coffee shop or boutique you often frequent? Do you have a friend or family member who is a manager or owner of an establishment? Do you work in an office that doesn’t normally have a casual dress code?

April is National Parkinson’s Awareness Month and this is a great opportunity to get our community involved in raising awareness of Parkinson’s disease. Print this letter and ask the general manager, your friend or your supervisor to partner with you and the Parkinson Association to Raise Awareness and Enhance Lives during April!

Allow them to pick a partnership opportunity that works for them. A dollar for every cookie sold in April will be donated to the Parkinson Association, ten percent of the dinner proceed will be contributed, every employee who want to wear jeans on Fridays in April pays five dollars which will support the Association’s programs and services. The opportunities for partnership are endless – and the awareness raised for Parkinson’s is immeasurable.

Share with others the complete face of Parkinson’s and let get our community involved in raising awareness.

Write a letter to the editor, write your congressman, help get a proclamation signed by your city mayor.  Be sure to ask for a photo of the mayor signing the proclamation with you and your friends by your side. 

Partnerships for Community Awareness Events

In-Kind Contributions for Parkinson Association Community Awareness Events
We utilize in-kind contributions for drawing prizes, through Prize-a-Plooza and as auction items at our Community Awareness Events. We would be honored if you contributed items or gift cards to our events. Please send this form with your contribution.

For more information on all fundraising events and sponsorship opportunities please contact Kari Buchanan at KBuchanan@ParkinsonRockies.org or (303) 830-1839

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Kirk Hall

The Rest of the Iceberg

The paper below written by Diane Cook, Kirk Hall, Linda Hall, Malenna Sumrall, and Terri Schmidt) has been accepted for publication in Neurology:

 

The Rest of the Iceberg

The easily recognizable motor symptoms of Parkinson’s disease (PD) are just the tip of the iceberg. However, beneath the surface lie larger and more troublesome non-motor symptoms. As anyone familiar with the fate of the Titanic can tell you, these are game-changers. Lists of non-motor symptoms include 20+ categories that range from nuisance to life-threatening. At the Second Annual International Palliative Care in PD Working Group in 2016 we, people with PD (PwPD) and their care-partners, were asked to share our experiences with non-motor symptoms. The following stories summarize our talks and provide a window into our lives.

Cook

10 PM: It’s dark, inside and outside. Most people are asleep. I’m not. I have already taken mirtazepine and melatonin. I’m trying to sleep but my skin itches. I get up and rub on some Benadryl. It usually doesn’t work, but I try it anyway. Eventually, I doze off and sleep fitfully. Midnight: I’m awake. I just can’t get comfortable. I’m too cold. I’m too hot. I toss the covers off. My legs have that creepy, crawly, jittery sensation. I get up and walk around the house. After a while I go back to bed. 2 AM: Painful shoulders and hips wake me up. Then I realize my stomach hurts. I go to the kitchen and eat some cheese. That helps me go back to sleep. 3 AM: I hear my husband telling me to stop shouting and to please turn over. I was having one of those terrifying dreams. I turn slowly because I am so achy and stiff. I try to continue sleeping. 4 AM: I get up to go to the bathroom. Sometimes I just stay up. It is less of a struggle to stay up than to try to get back to sleep. I am never sure how much rest my body has gotten. I worry about the physical and cognitive effects of lack of sleep. 5 AM: Gas and flatulence await me as I wake up and begin to move in bed. I drink 2 cups of Miralax hoping that today I will have a bowel movement. Mylanta is my constant companion. I have been to see 4 specialists over 10 years and still have no relief from intermittent constipation, cramping, diarrhea, bloating and gas. If I am constipated for 4-5 days, I become physically ill and am overcome by lightheadedness, nausea and weakness, sometimes to the point that I cannot drive. In pursuit of a remedy, I have drastically restricted my diet so I no longer eat most of the foods I enjoy. In fact, there are far more foods I can’t eat than I can. I am now underweight. 9 PM: The day is over. I again take mirtazepine and melatonin to help me sleep. I take Zantac for my stomach. And I hope, perhaps tonight, each time I wake up, somehow I will be able to roll over and go back to sleep.

K Hall

Cognition issues began soon after my diagnosis with PD and have since been my biggest concern. I initially encountered resistance to open discussion of this subject by doctors and patients as well as lack of online information. However it didn’t take long for me to realize that a significant percentage of PwPD are eventually diagnosed with dementia and that it is a terminal condition. This news would get most people’s attention and I was no exception. In the eight years that have passed since my PD diagnosis I been diagnosed with mild cognitive impairment (MCI). As MCI increases the risk of an eventual dementia diagnosis, I committed to myself to be transparent about the impact this had on life and hoped to encourage open discussion of this subject. Part of honoring this commitment was writing a book on this topic that shared information designed to expand the conversation, outlined scientific ideas and thoughts regarding causation and discussed implications for the future. My own experiences in this prodromal time period have enabled me to continue to live well and productively. Now I have reached acceptance of whatever the outcome may be. My goals are to 1) learn from the past, plan for the future, and live in the moment, 2)focus on quality of life 3) remain engaged as long as possible and 4) finish the race well.

L Hall

Through 47 years of marriage, my husband and I experienced many life events (jobs, children, relocations, surgeries, etc.) which resulted in “planned” relationship role changes. However my current role as care-partner with a PwPD and MCI involves not only planned role changes but also role “shifting”. Just like driving a car with manual transmission, our daily lives are shifting from one gear to another: up, down, neutral and don’t forget reverse! MCI has impacted my husband’s focus, attention, concentration, problem solving, and multi-tasking. As these deficits fluctuate throughout the hours and days our roles must shift. Some shifts include using an updated daily planner/calendar, limiting activity options, and assuring I have his undivided attention.

Driving patterns are an example of how our roles have shifted. Years ago when travelling to Colorado, my husband would drive all the way there. Returning home we would share the driving time. Let’s call that first gear. As years have passed, my husband’s ability to multi-task, concentrate and focus have diminished. Therefore, I now do most of driving to and from the mountains with my husband driving occasionally in areas of minimal traffic or when close to home. We are now living our lives in what I call second gear. For now, we have not yet shifted to third gear where I do all the driving.

Needless to say, the fluctuations and role shifting impacts many areas of our daily life. We have found that effective and sensitive communication helps keep us on course. Oh and don’t forget the benefits of a good sense of humor and lots of laughter. So yes, having PD/MCI is often like driving a car with a manual transmission. Rev up your engines and cherish the journey.

Sumrall

Mood and motivation disorders are among the most challenging non-motor symptoms to diagnose accurately in PD. Depression, a mood disorder, and apathy, a motivation disorder, have distinct characteristics, but they also have characteristics in common.1 Someone who is depressed might benefit from antidepressants; therefore, being diagnosed as apathetic could deprive such a person of needed medication. On the flip side, someone who is apathetic but is diagnosed as depressed might be prescribed unnecessary and possibly harmful medication.2

            My husband was a strong, confident PwPD. He was prescribed antidepressants for depression, however I was never convinced he was depressed. His diagnosis was based on interaction during a doctor’s visit, not a screening scale. So I wonder if there was miscommunication between us and the doctor about mood versus motivation. Yes, he felt the loss that PD had caused him, but he still enjoyed life. Joy and happiness shone on his face until the end.

          In spite of being a care partner who was always on the internet looking for answers, I never discovered apathy as a symptom until late in my husband’s life. Neurologists have only a short time every few months with the patient. Between those visits, the patient and care partner make many observations. I wish that we had been given better information and guidance about how to communicate his symptoms to his doctor. Good communication is absolutely crucial when it comes to PD non-motor symptoms. My husband was likely apathetic, not depressed. The thought that he might have been made worse by years of antidepressants is very hard to live with.

Schmidt

I do not talk about PD, because PD is not the most important part of me. I would rather talk about my grandkids, my family, my friends, my adventures and travels, my years as an emergency and now palliative care physician. However, it is important for health professionals to have some understanding of what it feels like on the inside therefore, here are the top ten things I hate about PD.

10: Is it me or PD?

Is my decision to eat a second piece of cake my old love sweets or the effect of dopamine on the reward system? I do not like that the disease might change my personality.

9: Unpredictability.

Despite taking medications on time, exercising, getting sleep and rest, I cannot predict and know how a day will unfold.

8: Internal weird, hard to describe feelings.

I often do not feel right on the inside. The right and left sides of my body can feel different sizes. I often see, think and feel through a fog of pea soup.

7: Knowing this is the best things will get.

It is difficult to come to grips with the meaning of the words “chronic, progressive, neurologic disease”.

6: My grandkids will remember me for things I could not do.

“Be careful of grandma… she can’t do that.” My wonderful is defined by what I can do, not what I cannot do. I traveled around the world, rafted class 5 rivers, climbed mountains, motorcycled across the continent and rappelled into crevasses. I like to see myself as the glittering, magical “fairy grandmother” but what will my grandkids remember? That I move slowly? Maybe am confused at times? Cannot do the things others in the family do?

5: Everything is work.

It is harder to do things others take for granted. When I get out of the car, I pause, think for a moment, “turn, put your feet on the ground, put your hand on the door post, stand-up…”. Nothing is automatic.

4: I hate asking for help.

I am a caregiver. First as a life guard, then as a nurse, now as a physician. PD takes me out of that role. I have to rely more and more on others. I do not like it and want to scream, “I can do it myself” but I cannot.

3: I am often not excited to get up.

I am not depressed. I wake up comfortable and relaxed but I do not want to start the day because the stiffness, pain and headaches start. It would be nice to wake up, get out of bed and feel good.

2: My biggest fear… that I will lose my mind!

My grandfather had Alzheimer’s, as did my mother. Now, there is a strong likelihood that I will develop dementia related to PD. THIS SCARES ME! I hope when it happens I have associated apathy and do not care. I hope that I do not know that I am a demented old lady. I hope it does not happen to me. I would rather go out with a bang than a whimper, please.

1: It is not the motor stuff; it’s the other stuff.

I am fatigued. It is work to do everything. I often cannot fall asleep (unless I cannot stay awake) and once asleep cannot stay asleep. If I stay asleep too long, I get stiff, so I have to set an alarm to wake up and take meds. Fatigue and insomnia make the best of us foggy. Add to that the slowness of PD and the side effects of the various medications and I am back to thinking through a fog or swimming in pea soup. My mouth is dry, the corners of my mouth are wet, my eyes are dry, my eyes water, my toes spasm, I have hot flashes, I get orthostatic, my head hurts, my neck hurts… the little things add up. None of them is a big deal alone but together they make it hard to forget about that chronic, progressive neurologic disease. Even when you cannot see it on the outside and “my symptoms are under control” I can feel it on the inside and it does not go away. Please remember that!

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