Saturday, January 31, 2015

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.

Friday, January 30, 2015

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!




Thursday, January 29, 2015

Change of Direction Progress Report

Image result for weight loss pictures



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.  

Sunday, January 18, 2015

A Change of Direction


I am ready to shake things up.

Perhaps it is due to the fact that a New Year has started.  Turn over a new leaf. Fresh start, fresh perspective, fresh goals.  Makes sense.

But it's more than that.  I am in a somewhat unique position.  I am a 66 year old PWP with related cognitive issues.  More importantly, I have been a husband for for 45 1/2 years, have two fine sons (42 and almost 40), two wonderful daughters-in-law, and six grandchildren (3 boys and 3 girls from 6-11 years old).

I am happy that I was able to write a book for the PD community that shares intimate insights into my life with a focus on the challenges of living with mild cognitive impairment.  I also shared how I have been attempting to cope with the situation as well as plans for the future.

Linda and I have been travelling extensively for the last few years to places like Mexico, Alaska, Hawaii, Montreal, and China.  Last year we were at the NCAA Final Four basketball tournament in Dallas and the Masters golf tournament in Augusta (a lifetime dream).  We have also continued to make presentations to PD support groups periodically in the Denver area and participate in the Parkinson Disease Foundation (PDF) Parkinson's Advocates in Research (PAIR) program.  Exciting new developments have included the opportunity to provide "patient perspective" to the planning and grant submission for a PD palliative care clinical research study at the University of Colorado Hospital and development of a personal PD resource website (www.shakypawsgrampa.com).

In spite of all this, it has become clear to me that the time is right to set new goals that may improve my health and quality of life.  In the process, I would send a positive message to my family, showing them that I am still willing and able to be proactive in order to maximize my time with them.  While I accept that, ultimately, this in in God's Hands, I have good reason to believe that my efforts could well make a difference. Beyond that, I may also have a chance to motivate fellow PWPs and provide feedback that could be useful to the PD research community.

I have started this past week on a 12-week program with my PCP that is designed to allow me to lose 25 pounds.  The program includes emphasis on nutrition and exercise.  I may provide more details down the road, but for now let it suffice to say that I am committing myself to this plan and am determined to see it through.

It has long been clear to me that we (PWPs & Care Partners) are all in this together.  I have seen and felt this time and again.  We are a source of love, support, and encouragement to each other.  With that in mind, I would covet any words of support you would care to post at the bottom of this page or on my Parkinson's disease facebook page (www.facebook.com/carinaandhercarepartnergramma).



Wednesday, January 14, 2015

Another PDF reprint regarding new drug therapy Duopa

The Parkinson's Disease Foundation (PDF) alerts the community that a medication called DUOPATM, gel formulation of carbidopa/levodopa, has been approved by the US Food and Drug Administration (FDA) for the treatment of advanced Parkinson's disease. This is the second drug approved by the FDA for Parkinson’s disease this week.
Parkinson's Disease Foundation: Solve. Treat. End.
With your support, we are funding research to solve, treat and end Parkinson's.
Support Research
Dr. Beck Video Pic
FDA Approves DUOPATM: What Does It Mean?
DUOPATM, a gel formulation of the drug carbidopa/levodopa that is delivered directly to the small intestine through a surgically-placed tube, has been approved by the US Food and Drug Administration (FDA) for the treatment of motor fluctuations in advanced Parkinson's disease. The approval was announced yesterday by the drug’s manufacturer, AbbVie, Inc.
This new drug is a formulation of the gold-standard treatment carbidopa/levodopa. The manufacturer states that DUOPATM uses the same active ingredients as orally-administered carbidopa/levodopa, but is designed to improve absorption and reduce off-times for people with advanced Parkinson's disease by delivering the drug directly into the small intestine. DUOPATM is delivered for 16 continuous hours every day by a pump through a tube that requires a small surgically-placed hole in the stomach.
What does it mean? According to Kathleen M. Shannon, M.D., Chair of PDF's Medical Policy Committee, this is a welcome advance for a subset of people living with advanced Parkinson’s disease.
Learn more by watching our short video and reading our official statement.
 View our Video
 Read our Statement
Parkinson's Helpline
Parkinson's Helpline
For additional information about medications for Parkinson’s disease, please contact PDF's HelpLine at (800) 457-6676 or info@pdf.org.
Thank you for your support,

James Beck, Ph.D.,
Vice President of Scientific Affairs,

Parkinson’s Disease Foundation
80 Percent
Our Commitment to Efficiency
Thanks to our low administrative costs, 80% of our budget goes directly to Parkinson’s research, education and advocacy. Make a donation today to support our mission. Thank you for your generosity.

Sunday, January 11, 2015

PDF Reprint regarding RYTARY extended release sinemet drug





This new drug is something that PWPs have heard about and have been anticipating for the last year.  I am going to discuss it with my doctor this month.  In my case, I am hoping this will allow me to sleep through the night without having to worry about taking sinemet every four hours, which I currently have to do to avoid feeling "really lousy" in the morning.  I will be interested to learn about how long this "extended release" drug may be effective for me, possible side effects, cost and more.  I would encourage all interested PWPs to discuss with their doctors!


The Parkinson’s Disease Foundation (PDF) alerts the community that RYTARYTM, an extended release formulation of carbidopa/levodopa, has been approved by the US Food and Drug Administration (FDA) for the treatment of Parkinson's disease.
Parkinson's Disease Foundation: Solve. Treat. End.
With your support, we are funding research to solve, treat and end Parkinson’s.
Support Research
Support Research
Pic
FDA Approves RYTARY: What Does It Mean?
PDF alerts the community that RYTARYTM, an extended release formulation of carbidopa/levodopa, has been approved by the US Food and Drug Administration (FDA) for the treatment of Parkinson's disease. The approval was announced on Thursday by the drug’s manufacturer, Impax Pharmaceuticals. Carbidopa/levodopa remains the gold-standard for easing motor symptoms. But as PD advances, the drug becomes effective for shorter time periods. This "wearing off" leads to a worsening of motor symptoms.
The manufacturer of RYTARYTM states that the drug is designed to reduce these “off times” in people with Parkinson’s disease. What does it mean? See our team’s take.
 Read our Statement
 View our Video
Parkinson's Helpline
Parkinson's Helpline
For additional information about medications for Parkinson’s disease, please contact PDF's HelpLine at (800) 457-6676 or info@pdf.org.
Thank you for your support,

James Beck, Ph.D.,
Vice President of Scientific Affairs,

Parkinson’s Disease Foundation
80 Percent
Our Commitment to Efficiency
Thanks to our low administrative costs, 80% of our budget goes directly to Parkinson’s research, education and advocacy. Make a donation today to support our mission. Thank you for your generosity.

Saturday, December 13, 2014

PD and Gastrointestinal Issues

I have written a previous article on autonomic dysfunction related to PD which includes gastrointestinal (GI) issues.  None of the PD symptoms are fun to talk about, but this is one of the least "savory" but most important in terms of impact on quality of life.  

It is extremely common for PWPs to have problems with constipation.  For me personally, I would rank this one right up there with getting a good nights sleep in terms of it's potential to impact the way I feel on a daily basis.  I was diagnosed early in 2008 and mild constipation became noticeable within the first year or so.  I managed it well enough with prunes, a laxative called Prunelax, adding fiber to my diet, and doing my best to stay hydrated (very important).  For the last six months or so, I have noticed that I feel bloated pretty much all the time to the point where I feel like I have swallowed a balloon even when I haven't eaten much.

The ways in which Parkinson’s disease can increase the risk of constipation include:
  • Lack of dopamine (a neurotransmitter) in the brain – impairs control of muscle movement throughout the body. Bowel muscles can become slow and rigid.
  • Uncoordinated bowel motions – the bowel muscles may be weak and unable to contract, or they may clench instead of relaxing when trying to pass a motion.
My movement disorder neurologist came up with a game plan to try to deal with this problem.  He started by prescribing carbidopa (the ingredient in Sinemet, which is a combination of carbidopa and levodopa, that enables the levodopa to cross the blood brain barrier in order to control many PD symptoms).  Apparently, there was a chance that this might help with my GI problems.  After about a week, I didn't notice and improvement plus I was experiencing significant dizziness and fatigue, so I stopped taking it.  He had also recommended taking Gas-X to help eliminate gas and reduce bloating. Unfortunately, that hasn't really helped either.

The next step was a prescription for a drug named domperidone (sounds much like the expensive champagne), which is described on the Mayo Clinic website as "a medicine that increases the movements or contractions of the stomach and bowel."  This drug is not available in the U.S., but is available online from Canadian pharmacies (prescription required).  This medication sounds promising.  I have it on order and will share its effectiveness (or lack thereof) once I have taken it.  Meanwhile, I thought this info was important enough to share with the PD community.

Update 12/28: I have been taking the domperidone for only 24 hours, but it is already helping a lot!  If interested, ask your doctor about it.

Tuesday, December 9, 2014

A Christmas Wish


Linda and I met the amazing and talented illustrator for my Shaky Paws children's books 

(www.shakypawsgrampa.com), Alison Paolini, at her home in Paradise, CA in October.

Alison is a 78 year old PWP and accomplished artist. She will be moving to Canoga Park

just north of LA in the near future to live with one of her daughters. I am trying to help

Alison with her wish to have her fantastic collection of paintings (oil, water color,

sketches, framed & unframed, diverse subjects) sold to raise money for Parkinson's

research! A friend will be transporting the paintings to LA in December.  I hope all my 

PD friends will share this with their networks in LA. What is needed is  to put 

together some type of PD (or other-like a hospital) event in the LA area or tie into an 

existing one. 


I am going to try to channel Mickey Rooney so that all "us kids" can work together to find 

a way to make Alison's wish come true!  If I were Mickey, I would have a great idea for a

show and pull together the resources to make it happen.  This is where I need help. 

Anyone connected with the "PD world" in the LA area or who knows anyone in the 

LA area that might have ideas, connections, or be willing to help put together such 

an event, please email me at kirk1248@comcast.net.

Wednesday, November 5, 2014

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

Tuesday, November 4, 2014

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:

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

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