PD News Update From John Dean

I would like to share this communication from my friend, John Dean, who is an ardent supporter for all things PD in Colorado.  He travels (almost continuously, it seems) nationally and internationally to stay abreast of the latest developments in PD and is actively involved with the Parkinson Association of the Rockies (PAR).  He is truly committed to helping the PD community.  Thank you John!!

I just wanted to send out a message to everyone about some upcoming events and other Parkinson’s information.

Dr. Kurtz Is Going to Kaiser

First, I'm sure you have all heard but just in case you haven't, Dr. Avi Kurtz will be heading over to Kaiser Permanente on January 1. If you have Medicare or some other insurance provider, he will no longer be able to see you. However, Kaiser is in open enrollment so you could make the switch to that company if you think that is the best solution for your needs.  if you already have Kaiser and had simply been waiting for this opportunity, I would start contacting your doctor now to schedule an appointment in January :-).

I have been in contact with a number of movement disorders specialists to see how to handle the large community of patients that have become accustomed to the quality of care that Dr. Kurtz has provided us over the last three years.

There are a number of neurologists in the community (not movement disorders specialist) and you may consider seeking out their help. Please don't hesitate to contact me if you need any guidance finding a local resource. However, I would recommend also trying to develop a relationship with a movement disorders specialist (i.e a Parkinson's expert).

There are a couple of movement disorders specialists who make office visits in the Boulder area and I wanted to pass along their contact information.  There are a couple of other potential options coming soon but I want to wait to see how those play out before making any announcements.

Dr. Monique Giroux and Sierra Farris

Dr. Monique Giroux and Sierra Farris have been seeing patients in Boulder for the better part of a year. Although they are based out of their "Center for Movement and Neuroperformance" in Englewood, they are in Boulder every month as part of a DBS clinic. They also see people in Fort Collins (again, I think it's currently one time per month). However, they are actively working to increase their presence up north as we speak. It would definitely be worth contacting them at their clinic and seeing whenthey are able to add you to their roster.

To schedule an appointment, call Ingrid McGruder at 303-781-0511

I also wanted to let everyone know that Sierra Farris is one of the best DBS programmers in the country. If you have had any issues that you cannot seem to resolve following DBS surgery, I would recommend giving her a call for a consult. Her experience and skills are simply unmatched.

DBS University

If you want to know more about DBS, Dr Giroux and Sierra Farris(as well as some of their colleagues including surgeon Adam Hebb as well as a physical therapist and a neuropsychologist) will be teaching "DBS University" a daylong program at the Longmont senior center on Saturday, December 6. http://www.centerformovement.org/calendar/action~agenda/page_offset~1/time_limit~1415458801

Dr. Heather Ene

Dr. Heather Ene, a movement disorders specialist from the University of Colorado, is also seeing patients in Boulder. Although she continues to be based out of the hospital in Aurora, she is currently in Boulder 2-3 full days per month, generally the 1st, 3rd and 5th Fridays with a long-term goal towards increasing to one day per week.

Address: (it is just across from NIST)

Dr. Heather Ene, MD

University Family Medicine at Boulder, 350 Broadway Street, Suite 130, Boulder, CO 80305 clinic: 720-848-9200

Referrals from providers should be faxed to 720-848-9202. The clinic will then call the patient to schedule an appointment.

DBS Presentation at the University Of Colorado

Also related to DBS, the University of Colorado is hosting a program with Dr. Olga Klepitskaya and surgeon Aviva Abosch to discuss the latest research including asleep versus awake DBS. That will be during the day on Monday, November 17 from 1:00 PM-2:30 PM at the UNIVERSITY OF COLORADO HOSPITAL, Anschutz Inpatient Pavilion 2, 12605 E. 16th Ave. Aurora, CO 80045. Cost: Free and Lunch will be provided. RSVP: talia.kay@uchealth.org or 720.848.7378.

Capturing Grace premiere

This is a documentary about "Dance for PD", produced by Dave Iverson (who also produced "My Father, My Brother and Me"). If you happened to be at the Global Community Conference (in Keystone Colorado) this past March, Dave gave us a little preview of some of the key scenes. "Capturing Grace" is premiering at the Stars Film Festival in Denver on November 17 and 18. Tickets and more information are available at http://www.capturinggracefilm.com/screenings/2014/11/17/capturing-grace-starz-denver-film-festival-1

Party with a House Fundraiser for the Parkinson's Association of the Rockies

On Saturday, November 22, the Parkinson's Association of the Rockies is hosting their second annual "Party with a House" fundraiser at old Chicago pizzeria in Broomfield (1280 E. 1st Ave.). This is a gingerbread house decorating competition and it can be a very nice way to spend some time with grandchildren or other young ones while raising money and awareness for Parkinson disease. There are a number of other venues in Denver throughout November and December. For more information and to register, visit www.parkinsonrockies.org/houseparty or call 303-830-1839.

Every Victory Counts (Third Edition)

I had a chance to take a look at the latest version of this very popular guide at a program with the Davis Phinney foundation in Dublin last month ("International Patient Empowerment Day" although I like to call it the DPF's first "International Victory Summit" ;-)). There is some great video, pictures and other information about this event available at www.move4Parkinson's.com/summit  

The foundation has secured a grant that allows them to provide a free copy of this book to every household affected by Parkinson's. In addition, f you reach out to the members of your support group, you can provide Anna Van Pelt at the Davis Phinney foundation (avanpelt@davisphinneyfoundation.org  - 303-733-3340) with the contact information and details for each member requesting a book and she will give you a set of books for you to pass out at your next support group event.

This is a great opportunity to provide high-quality information to your members while getting the word out about the Davis Phinney Foundation for Parkinson's, our hometown proud Parkinson's advocacy organization with national (and now international :-) reach).

An Opportunity for a Little Fundraising for the DPF

I would recommend that you take a moment during one of your support group meetings to pass out the book and let people know about the Davis Phinney Foundation for Parkinsons. Although the book is free, this is a nonprofit organization and I think all of our groups could take the opportunity to pay things forward and collect a few donations for the Davis Phinney foundation. Because they have gone through the not insignificant effort of securing a grant, they are able to provide the book to anybody and everyone who needs this information but it doesn't hurt to give a little back when you can :-).

PD Me - an app for Parkinson’s (full disclosure, I am involved in this project).

If you happened to be at the E3 a couple of weeks ago, you may have seen app developer Marc Silverman demoing a new app we have been collaborating on for the better part of the year. It has finally been released on the app store https://itunes.apple.com/us/app/pd-me/id927178736?mt=8 . In under two minutes, PD Me can provide you with a quick snapshot of your current function and give you valuable insight about the impacts of your symptoms, medication timing and other elements. So fire up those brand-new iPhone 6's and check it out :-)

We are currently working on a number of other tools for version 2.0  including a version for Health Care Professionals.  We're definitely looking for anybody interested in helping us test the device out.

Boxing For PD

Last week, I had the opportunity to attend the "Boxing for PD" program at the Salvation Army gym near Stapleton. It was an excellent event with so many possibilities for people in our community. Moreover, there are a couple of Life Care PT's, Hope Engel and Meredith Roberts, donating their time and expertise to Rick Schwartz of PAR, former professional boxer Anthony Mora and CU PT student Lee Ming. If you're looking for a challenge and a new experience, I can't recommend this program highly enough. It is being hosted on Saturdays at 10:00 AM at the Salvation Army, Denver Red Shield, 2915 High St, Denver, CO 80205

To register, contact the Parkinson's Association of the Rockies at 303-830-1839 or info@ParkinsonRockies.org.  For more information about what the program involves (i.e fitness level), contact Lee at ming-lee.chow@ucdenver.edu

　

Conclusion

In the meantime, please don't hesitate to reach out to me if I can be of helpful or provide you with any additional information. I am always interested in hearing about any and all things Parkinson's related so please keep me in the loop and let me help get the message out.

I hope to see some of you at the "Partners in Parkinson's" event this Saturday. Next week, I'll be traveling to the West Coast to be part of the faculty for the Allied Team Training Program (ATTP) with the National Parkinson's Foundation and International Parkinson and Movement Disorder Society . I'll send along another message with any interesting information I get from that event.

-John

PS

I'm just getting started in helping John Carlin establish a cycling program for Parkinson's. We are in the earliest stages of development but if that's an area of interest to you, please send me a message so I can get you involved.

PPS Life Care Centers of America will be holding our "Parkinson's Warriors" high-intensity exercise programs again next year (http://www.timescall.com/lifestyles/health/ci_26302422/longmont-parkinsons-event-aims-combat-regression-exercise ).

We hope to expand it to more locations. If you think that's something you want in your neighborhood, just give me a quick email or phone call to let me know so I can include it in our planning.

John M Dean MA CCC-SLP
Parkinson Disease Specialist
www.johnmdean.com
john@johnmdean.com
303-532-6209

Parkinson's And Autonomic Dysfunction

We know now that non-motor symptoms of Parkinson's disease are often more problematic for PWPS than motor symptoms.  One of the more complex categories within the non-motor group is autonomic dysfunction, which includes a wide range of issues that are familiar to those living with PD.  These include constipation and other digestive problems, orthostatic hypotension (changes in blood pressure that can cause dizziness and falls especially when standing up from sitting), swallowing, sweating, vision problems (like light sensitivity or blurriness), urinary problems , and sexual problems.  The information below is reprinted from Wikipedia:

 

From Wikipedia, the free encyclopedia

Dysautonomia (or autonomic dysfunction, autonomic neuropathy) is a condition in which the autonomic nervous system (ANS) malfunctions. It is an umbrella term for various forms of ANS malfunction. Dysautonomia is a type of neuropathy affecting the nerves that carry information from the brain and spinal cord to the heart, bladder, intestines, sweat glands, pupils, and blood vessels. Dysautonomia may be experienced in a number of ways, such as difficulty adapting to changes in posture, as well as digestive symptoms.

The diagnosis is achieved through functional testing of the autonomic nervous system, focusing on the organ system affected. Investigations may be performed to identify underlying disease processes that may have led to the autonomic neuropathy that is causing the dysautonomia. Symptomatic treatment is available for many symptoms associated with autonomic neuropathy, and some disease processes can be treated directly.

Signs and symptoms

The symptoms of dysautonomia are numerous and vary widely from person to person depending on the nerves affected and underlying cause. Symptoms often develop gradually over years. Each patient with dysautonomia is different—some are affected only mildly, while others are often left disabled.

The primary symptoms present in patients with dysautonomia include:

• Excessive fatigue
• Excessive thirst (polydipsia)
• Lightheadedness or dizziness, often associated with orthostatic hypotension (abnormally low blood pressure on standing), sometimes resulting in syncope (fainting)
• Rapid heart rate or slow heart rate
• Blood pressure fluctuations
• Difficulty with breathing or swallowing
• Shortness of breath with activity or exercise
• Distension of the abdomen
• Mydriasis (abnormal dilation of the pupils) leading to blurry vision
• Urinary incontinence or neurogenic bladder dysfunction
• Gastroparesis (delayed gastric emptying) with associated nausea, acid reflux and vomiting
• Constipation
• Excessive sweating or lack of sweating (ahydrosis)
• Heat intolerance brought on with activity and exercise
• Sexual problems including erectile dysfunction in men and vaginal dryness and orgasmic difficulties in women

Causes

Dysautonomia may be due to inherited or degenerative neurologic diseases (primary dysautonomia) or it may occur due to injury of the autonomic nervous system from an acquired disorder (secondary dysautonomia). Side effects of drugs can cause abnormalities in the function of the autonomic nervous system, producing an iatrogenic form of dysautonomia.

The most common causes of dysautonomia include:

• Autoimmune disorders including Sjogren's syndrome, lupus, sarcoidosis, Anti-NMDA receptor encephalitis
• Diabetes mellitus
• Multiple sclerosis
• Parkinson's disease (in advanced parkinsonism or early in multiple system atrophy)
• HIV and AIDS
• Hereditary disorders including familial dysautonomia and Ehlers-Danlos syndrome
• Pure autonomic failure
• Amyloidosis
• Botulism
• Chronic alcohol misuse
• Some bacterial infections (Lyme disease and tuberculosis)
• Spinal cord injury
• Surgery or injury involving the nerves
• Physical trauma or injury

Sympathetic nervous system-predominant dysautonomia is common in fibromyalgia, chronic fatigue syndrome, irritable bowel syndrome, and interstitial cystitis, raising the possibility that such dysautonomia could be their common clustering underlying pathogenesis.

Mechanism

The ANS is a component of the peripheral nervous system and is made up of two branches: the sympathetic Nervous System (SNS) and the parasympathetic nervous system (PNS). The SNS controls the more active "fight or flight" responses such as increasing heart rate and blood pressure. The PNS can be thought of as the "rest and digest" part of the autonomic nervous system, as it slows down the heart rate and aides in digestion. Symptoms typically arise from abnormal responses of either the sympathetic or parasympathetic systems based on situation or environment.

Diagnosis

Dysautonomia does not produce unique symptoms. It is the set of symptoms, taken together, that suggests that a dysautonomic state is present. The patient's individual complaints can each be part of another disease process which often leads to misdiagnosis. Collaboration between many specialists is often necessary. Care is primarily directed by a neurologist.

Indications for laboratory evaluation include:

• Diagnosis of generalized autonomic failure
• Diagnosis of benign autonomic disorders
• Diagnosis of distal small fiber neuropathy
• Evaluation of orthostatic intolerance
• Evaluation for autonomic dysfunction in known peripheral neuropathies
• Detection of sympathetic dysfunction in sympathetically mediated pain syndromes

Routine autonomic nervous system dysfunction tests include:

• Valsalva maneuver
• Tilt table test
• Gastric emptying tests
• Quantitative sudomotor axon reflex test (QSART)
• Thermoregulatory sweat test
• Urodynamic testing

Other tests may be done to check for disorders that can cause the autonomic disorder include:

• Small fiber neuropathy biopsy
• Endocrine testing

Management

Treating dysautonomia can be difficult. There is no one scientifically proven treatment for dysautonomia. Since dysautonomia is made up of many different symptoms a combination of drug therapies is often required to manage individual symptomatic complaints.

Drugs such as fludrocortisone, midodrine, ephedrine and SSRIs and anticonvulsants can also be used to treat an assortment of symptoms with varying degrees of success. Measures to combat orthostatic intolerance include elevation of the head of the bed, frequent small meals, a high-salt diet, fluid intake, and compression stockings. Proton pump inhibitors and H2 receptor antagonists are used for digestive symptoms such as acid reflux.

For cardiovascular symptoms, a cardiac ablation, or balloon angioplasty procedure, can be performed for heart related symptoms of ANS.

Dysautonomia secondary to autoimmune diseases or multiple sclerosis (MS) can often improve if the underlying disorder is diagnosed and therapy targeted for the underlying disorder is successful. Immunosuppressive treatment regimens have varying success in alleviating autonomic symptoms.

Prognosis

The outlook for patients with dysautonomia depends on the particular diagnostic category. Some autonomic nervous system disorders get better when an underlying disease is treated or offending agent is removed.

Cases secondary to autoimmune diseases, diabetes and MS are not life-threatening, though minor to major limitations in activities of daily living can occur.

Patients with chronic, progressive, generalized dysautonomia in the setting of central nervous system degeneration such as Parkinson's disease or multiple system atrophy have a generally poorer long-term prognosis. Death can occur from pneumonia, acute respiratory failure, or sudden cardiopulmonary arrest in such patients.

Often there is no cure. Damage to the nerves of the autonomic system is often not reversible, and comprehensive disease management is essential to improving patient quality of life.

See also

• Familial dysautonomia
• Postural orthostatic tachycardia syndrome
• Dopamine beta hydroxylase deficiency
• Peripheral nervous system
• Autonomic nervous system

 

 

November is National Family Caregivers Month

                          

 

 

 

 

 

 

                                                                                

 

I am reprinting this article from November 2013 as it is, once again, National Family Caregivers Month:

This post includes information from the Caregiver Action Network* site, to which all those who benefit from the support of caregivers are indebted.  This important information is included on their website:

• There are as many as 90 million family caregivers in the U.S. today.
• Two out of every 5 adults are family caregivers: 39% of all adult Americans are caring for a loved one who is sick or disabled – up from 30% in 2010.
• And it’s not just women doing the caregiving: Men are now almost as likely to say they are family caregivers as women are (37% of men; 40% of women). And 36% of younger Americans between ages 18 and 29 are family caregivers as well.
• Family caregiving is serious work: Almost half of family caregivers perform complex medical/nursing tasks for their loved ones – such as managing multiple medications, providing wound care, and operating specialized medical equipment. 
• Family caregivers are the backbone of the Nation’s long-term care system: Family caregivers provide $450 billion worth of unpaid care each year. That’s more than total Medicaid funding, and twice as much as homecare and nursing home services combined. 

We in the Parkinson's world refer to caregivers as care partners in order to emphasize the joint involvement of patient and care partner.  We recognize that care partners come in a variety of "shapes and sizes", including women, men, family members, or friends  We also need to pay tribute to the important roles played by paid homecare, assisted living, or nursing home staff, many of whom are driven primarily by their desire to care for others.

 

I have written recommendations for PWPs and care partners in previous blog posts that include thoughts priorities for each group as well as how they can support each other.   Mutual support, communication, patience, teamwork, and love are hallmarks of a desirable PWP/care partner relationship.  I would emphasize the desirable part of that statement while recognizing that we are all human and that there are forces at work that can make this difficult on any given day.  The important thing, I think, is that when we "stray off course" to recognize the importance to both parties of returning to that mindset as soon as possible.  If we have times when that is difficult, it is important to be willing to reach out to resources like support groups, "umbrella" organizations (like Parkinson Association of the Rockies in our area), clergy, family, or friends.  We are not in this alone!

In my case, I am extraordinarily fortunate to have the best caregiver I could ever hope for, my wife of 44 years, Linda.  As a former social worker, it is her nature to care for others and put their needs ahead of her own.  While we have our ups and downs (see the previous paragraph) like anyone else, we are blessed by mutual love, devotion, support of family and friends, and shared faith that serves as our "true north".  Importantly, we are also both involved in and committed to supporting our local support group in Highlands Ranch, Bionic Brigade (the Denver area DBS support group), Parkinson Association of the Rockies (PAR), a new care partner support group, and the Parkinson Disease Foundation (PDF) patient research advocacy program, as well as remaining involved in community support programs through our church.

One of the ways Linda displays her patience is by allowing me to spend hours at my computer working on my writing, which currently includes this blog and finishing a new book titled Window of Opportunity: Living with the reality of Parkinson's and the threat of dementia**.  She did the same as I wrote my PD-related children's books***in 2011 and earlier this year (the new one focuses on the role of care partners as well as other PD issues).  We travelled together to the recent World Parkinson Congress in Montreal.

 



She demonstrates her commitment to my well-being by encouraging me to join her for walks, bike rides, or to work out at our local recreation center.  She is my golf partner, camping buddy, and travel companion (we have a trip to Shanghai planned to visit our son and family next March).  Since I only drive very short distances infrequently, she is also my chauffeur.  

I would invite all my PWP friends to go out of their way in November (and in the months that follow) to find ways both subtle and overt to express our love and appreciation to those who are devoting their lives to us, often at the expense of their own interests.  Finally, we need to recognize that PWPs have a caregiver role to play by ensuring that our partner's wellness is not overlooked.  After all, where would we be without them? 
 

 

* The Caregiver Action Network is the nation’s leading family caregiver organization working to improve the quality of life for the more than 65 million Americans who care for loved ones with chronic conditions, disabilities, disease, or the frailties of old age. CAN serves a broad spectrum of family caregivers ranging from the parents of children with special needs, to the families and friends of wounded soldiers; from a young couple dealing with a diagnosis of MS, to adult children caring for parents with Alzheimer’s disease. CAN (formerly the National Family Caregivers Association) is a non-profit organization providing education, peer support, and resources to family caregivers across the country free of charge.
**Not yet released
***Kirk's children's books are books one and two in his "Shaky Paws Grampa" series titled Carson And His Shaky Paws Grampa (http://www.innovopublishing.com/innovo-store/digital-titles/product/190-carson-and-his-shaky-paws-grampa-by-kirk-hall-paperback-edition.html) and Carina And Her Care Partner Gramma(http://www.innovopublishing.com/innovo-store/digital-titles/product/343-carina-and-her-care-partner-gramma-by-kirk-hall-hardback.html).

How is Lewy Body Dementia different from Alzheimer's?

I hear this question quite a bit and thought I would share this link to a helpful article: http://alzheimers.about.com/od/typesofdementia/a/Whats-The-Difference-Between-Alzheimers-And-Lewy-Body-Dementia.htm.

In presentations I have heard by experts on this subject, the major difference is described this way:

"With Alzheimer's, information is not retained in memory.  It is not there to be accessed. With Parkinson's and Lewy Body dementia (the category of cognition/memory related problems that sometimes occurs with PD), information is received and stored in memory, but the brain has trouble retrieving it"