share their experiences and answer questions regarding their DBS surgeries.
July 15 Dr. Michael Munz, neurosurgeon, will be discussing all aspects of Deep Brain Stimulation. Couple this with our June DBS Roundtable, and they are two programs you won't want to miss.
August 19 Caring and Sharing. What an opportunity to find out how other Parkinsonians and their caregivers are doing.
September 16 Dr. David Vargas, D.C., will share his views and experiences with acupuncture and its effect on patients with Parkinson's disease.
May Program
Several tips were offered:
- Always warm up and cool down.
- Workout in safe environment
- Compensate for loss of balance
- Emphasize BIG – MOVEMENTS, ARM SWINGS, & STEPS
- Think F.I.T. frequency, intensity, time
- Always be safe
- If it hurts don’t do it.
- Consider aquatics
Four distinct exercise programs were discussed:
The Alexander Technique – an exercise program that revolves around posture, balance and correct body movements.
The Argue Method – Movement is taught, through several exercises, but training the mind is critical as one needs to be aware of each move they are about to make, and focus upon that movement. Many of the Argue Method exercises are incorporated in our Wednesday exercise group.
LSVT BIG – This is a copyrighted program that stresses large movements during daily routines, and during exercises. The purpose of this program is to combat bradykinesia. (Slowness of movement)
Exerstriding – This technique is a form of cross country skiing on dry land. You walk using ski type poles to push off, help with balance, and help lengthen your steps and exaggerate arm movement. You heart rate is increased, calories are burned quickly, and stress plus downward forces on your lower body are decreased by 25%.
Several pictures of specific exercises, and sample exercise programs were included in the handout.
A NOTE FROM DAN SPANGLER
Numbers in the Wednesday exercise group have reached into the thirties (PD spouses and caregivers combined). Because this packs out the old Turnstone auditorium, during exercise class, several of the caregivers have chosen to walk and/or talk (a lot) about caregiver issues. While this is now being done informally, we have been thinking about creating an official and separate caregivers group. Before the steering committee gives their approval, there are lots of questions to answer: WHAT IS THE PURPOSE OF THE GROUP? WHO SHOULD BE INVOLVED? WHEN (time), AND WHERE SHOULD IT MEET? WHO SHOULD LEAD THE GROUP? WHAT TYPE OF PROGRAMMING SHOULD BE AVAILABLE? HOW CAN WE BEST MEET THE NEEDS OF THE MOST CAREGIVERS? WHO CARES FOR THE PD SPOUSE IF THEY CANNOT BE LEFT ALONE AND MEETING TIMES DO NOT CORRESPOND TO EXERCISE CLASS?
Would you be willing to serve on an exploratory committee? IF so, please e-mail, or call. We welcome your input on this issue. 486-4893.
TIPS to make your life better
If you are fifty years old you probably learned in your high school drivers education class that for every ten miles per hour you are driving, you should follow the car ahead of you one car length. Do you know that now they say we should be at least three seconds behind the car ahead of you?
Or, you were probably taught to grasp the steering wheel at the ten and two o'clock positions; now, if you grasp the wheel like you were taught, and you are in an accident that activates your air bags, you stand a good chance of injuring your arms and hands when the bag activates. Now they say we should grasp the steering wheel at 4:00 and 8:00. Most of us had driver’s education before they had invented air bags, and so there are a number of things that have changed or are different from what we learned.
Auto safety is very important for all ages. Probably few of us have updated our driving skills and knowledge since we were much younger. Many communities have classes for drivers who need to be updated. The classes review the rules of the road and the latest defensive driving techniques.
Some of the driver’s education classes are presented in a classroom, while others are presented over the internet. Some automobile insurance companies reduce the cost of premiums for drivers who have successfully completed the classroom version of the course.
Whether or not you save money, taking the course and brushing up on your driving skills and knowledge is the important thing. I recently took the AARP Driver Safety Program over the internet. I would have preferred the classroom version but was unable to find it locally. The internet course costs $15.95 for AARP members and $19.95 for non-members. The internet course is eight hours long but can be divided up over several days. I think the class was helpful for me. Hopefully, I am a safer driver now than I was a few weeks ago.
If you want more information about the AARP Driver Safety Program online you can type those words in to any search engine (like Google, Yahoo, etc).
The National Safety Council offers a similar class at different sites around the country, but apparently not in Fort Wayne.
Be Safe!
submitted by Ed Gatke
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Parkinson’s Action Network
Dear Friend:
Better treatments and a cure. That is what we are all working toward. With those two goals always at the forefront of our work, PAN works to educate our community with our monthly message. It now has a new look, and I will be giving you a sneak peek at the articles written each month. I hope you like the new look, and we welcome your feedback for ways to improve it.
PAN is making strides to help speed up the development of new drugs and therapies. The Cures Acceleration Network has been passed by Congress, and PAN is now working to get it funded so that the National Institutes of Health can get moving on this life-saving effort. On June 24 we will host an interactive Webcast, "Emerging Therapies: From Microscope to Marketplace," that will discuss issues affecting the therapy development pipeline. One participant, PAN's Minnesota State Coordinator Jackie Hunt Christensen gives an insider's view to clinical trials and how they help the entire community. We are also happy to welcome Joel Havemann, a former editor at the Los Angeles Times, who will be writing a new monthly column for PAN about his experiences in the Parkinson's community.
As we continue working toward our ultimate goal of a cure for Parkinson's, please join us on the critical issues facing our community. Your voice is vital to our success, and your support lets us continue to do this important work.
taken from wwwparkinsonsaction.org
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Parkinson’s Disease Patients Dance
Their Way to Improved Health
Jordan Turgeon
Medill - As Chicagoan Richard Younker, 70, starts to belt a familiar tune, the pianist joins with cheerful accompaniment. Vanya Wang, 72, breaks in with a few lines of “Oh! Susanna.”
Younker and Wang are taking a short break from their twice-weekly dance class for Parkinson’s disease patients, held Mondays and Thursdays at Chicago’s Drucker Center. Both were diagnosed with Parkinson’s disease about three years ago.
Their instructor, dance and movement sciences expert Citlali Lopez-Ortiz, volunteers her time, as does the assistant and live pianist, to help Parkinson’s disease patients maintain or improve their mobility and balance. The dance program began in November 2009 at the request of physicians from the Northwestern Faculty Foundation and the Rehabilitation Institute of Chicago, Lopez-Ortiz said.
“There is a whole set of literature that speaks to the importance of rhythmic, auditory and visual stimulation to improve motor coordination or rhythmic motor patterns in Parkinson’s disease,” Lopez-Ortiz said. “So here, we have the music – that type of auditory stimulation – and we try to design motions that encourage rhythmic patterns and motor control.”
And the participants said the dance classes are working. Wang said her husband has commented on her improvement.
“We have wonderful role models to follow,” Wang said of Lopez-Ortiz and her assistant, Jamila Kekulah Kinney. “They’re so agile and they move with such grace.”
Individuals diagnosed with Parkinson’s disease who are interested in the dance class can contact Lopez-Ortiz at c-lopez-ortiz@northwestern.edu or by phone at (312) 238 – 4401 for more information.
“I don’t know of another program that has all of these components in the city -- nor in the country -- with physicians’ involvement, and scientists’ involvement, and certified movement therapists involved,” Lopez-Ortiz said.
taken from the Northwest Parkinson’s foundation Website
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Bar-B-Que Tips
There's no such thing as too much charcoal fluid.
Always trim the fat from meat. That way you'll have a snack for later.
The cornier the saying on your apron, the better the burgers.
When the grill starts to melt, the coals are hot enough.
If we were meant to eat veggie burgers, cows would be made out of soy protein.
Cleaning the grill is a waste of time because the fire will kill the germs.
If your buns get too toasted, try facing the grill.
If you have a dog, you have a portable garbage disposal.
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The following is an excellent guide for creating your own essential information sheet and can be as easy as printing and filling in the blanks. You can find it at iupdclinic.org. It would be of great value in cases of emergency to help others understand the situation.
Essential information about my Parkinson’s Disease:
Name: ___________________________________________ DOB: _____________________
Family Contact: _______________________________ Phone#: _________________________
I have Parkinson’s disease (PD) which doctors diagnosed in _________ (year). It is important that those who care for me have a basic understanding of the disease so that my symptoms can be accurately recognized and treated.
WHAT IS PARKINSON’S DISEASE?
Parkinson’s disease is a slowly progressive disorder, generally associated with tremor, stiffness,
rigidity of the muscles and slowness of movement. Patients with PD have low dopamine levels in
the brain. The medications for PD increase the level of dopamine. When the PD medications are
not working (off-time), the tremor and stiffness will return. Patients may have wiggly or writhing movements (dyskinesias). When the patient is experiencing dyskinesias it usually indicates that the Sinemet (carbadopa-levadopa) and/or Stalevo level is high.
CHARACTERISTICS OF PARKINSON’S DISEASE
I may personally exhibit those symptoms which have been checked below.
□ Tremor
□ Rigidity / Stiffness of muscles
□ Bradykinesia (slowness of movement)
□ Stooped posture
□ Low blood pressure
□ Difficulty walking / imbalance & falls
□ Difficulty swallowing
□ Dementia / Hallucinations / Confusion
□ Speech problems (reduced volume / slurred)
□ Constipation & Urinary symptoms
□ Drooling
□ Sleep disturbances (daytime somnolence, night time insomnia, acting out dreams)
□ “Masked face” (Flattened affect)
FACTORS THAT WORSEN PD SYMPTOMS
• Not getting medications on time
• Taking Carbidopa/Levodopa, Sinemet®, Parcopa® with protein or iron
• Stress, anxiety, lack of exercise and/or the need for rest
• Being prescribed incompatible medications
• Infection
____________________________________________________
□ ALERT!! I have a DBS (deep brain stimulation) implant.
Questions should be directed to my DBS nurse at: _______________________ or to Medtronic at 1-800-328-0810.
-WARNING: Diathermy (therapy which uses high-frequency current) is completely contraindicated; MRIs can only be done following strict guidelines.
Patient Name: ______________________________ Date Updated:________________ Page 2 of 5
PD AND MEDICATIONS
Medications commonly used to treat PD:
DOPAMINE
• Sinemet®(carbidopa/levodopa))
• Parcopa®
• Stalevo® (Comtan + Sinemet)
MAO-B INHIBITORS
• Eldepryl® (selegiline)
• Zelapar® (selegiline)
• Azilect® (rasagiline)
DOPAMINE AGONISTS
• Requip ® (ropinirole)
• Mirapex ® (pramipexole)
• Parlodel® (bromocriptine)
COM-T INHIBITORS
• Comtan® (entacapone)
• Tasmar® (tolcapone)
ANTI-VIRAL
• Symmetrel ® (amantadine)
INJECTIONS
• Apokyn® (apomorphine)
Current PD medications I am taking:
Medication Dose # of pills ______
Each dose Times taken _________
Why I take this medication _______________________
Common potential side effects of PD medications:
nausea dizziness hypotension
confusion hallucinations orthostatic hypotension
Dyskinesias compulsive behavior
Patient Name: ______________________________ Date Updated:________________ Page 3 of 5
Potential SERIOUS PD medication side effects:
• MAO-B Inhibitors (selegeline, rasagiline, Zelapar): DEMEROL MUST NEVER BE GIVEN WITH MAO-B inhibitors!
IF POSSIBLE, MAO-B inhibitors should be stopped for two weeks prior to surgery. It is imperative that the attending physicians verify and stipulate this interval.
THESE medications may be given with SSRI’s safely.
• COM-T Inhibitors (Stalevo, Comtan, Tasmar):
These medications can cause severe diarrhea which will resolve once the medication is changed.
• Dopamine Agonists (Requip, Mirapex, Parlodel):
Watch for obsessive-compulsive behavior, hallucinations, swelling, and psychosis.
• Atypical Anti-psychotics (Seroquel, Clozapine):
These drugs are utilized to help control hallucinations and delusions. May cause
hypotension, clozapine must be monitored with weekly CBC’s/diff for neutropenia
MEDICATIONS CONTRAINDICATED for use in PD patients:
NEUROLEPTICS
Haloperidol (Haldol) Thiothixene (Navane)
Chlorpromazine (Thorazine) Flufenazine (Prolixin)
Thioridazine (Mellaril) Risperdal
Molindone (Moban) Zyprexa
Perphenazine (Trilafon) Geodon
Perpenazine and amitriptyline (Triavil) Abilify
Benzodiazapines
GI Drugs
Promethazine/Phenergan Metoclopramide (Reglan)
Prochlorperazine
Others
Dextromethorphan*
Benadryl * *These can worsen confusion, particularly in elderly PD patients.
Patient Name: ______________________________ Date Updated: ________________ Page 4 of 5
MEDICATION DOSING AND DIETARY INFORMATION
Medication dosing, timing, and administration:
The timing of my medication is very important to help minimize my symptoms and “off” times. I
must be given my medication(s) promptly at the times specified. If this is not possible, consult my
admitting physician for authorization to administer my own medication, or alternatively, to have it
administered by my caregiver.
IN PARTICULAR, my carbidopa/levadopa (or Sinemet) must be taken 30-60 minutes before
or two hours after my meals, because protein prevents the maximum amount of dopamine from
reaching the brain. The relationship of protein consumption and medication timing greatly affects
my condition.
If I am not able to swallow, my medications may need to be crushed and administered by a
stomach tube (exception: Sinemet CR must not be crushed) or the dissolvable form—
Parcopa®—should be ordered. If I am on Sinemet and Intravenous Protein (TPA) is
proposed, my neurologist must first be contacted because the dosage may need to be adjusted.
PD and Surgery
1. If possible, stop MAO-B Inhibitors (Eldepryl/selegiline, Azilect, Zelapar) two weeks prior to surgery.
2. Pre-operative dosing instructions: There should be no reason to skip PD medications prior to surgery even if directions are NPO (nothing by mouth) for 6-10 hours prior to surgery.
Discuss with surgeon or anesthesiologist.
3. Restart PD medications post-surgery (except MAO-B Inhibitors) as soon as possible even if NPO; discuss with surgeon.
4. Be aware that PD patients have a lower threshold response to analgesics (sedation/pain medications) and could experience hallucinations; however, this is not a contraindication (reason to avoid) their administration.
Patient Name: ______________________________ Date Updated: ________________ Page 5 of 5
Additional concerns / comments / other conditions for which I am being treated:
________________________________________________________________________________
________________________________________________________________________________
________________________________________________________________________________
________________________________________________________________________________
NEUROLOGICAL ADVISORY
Ready access to a neurologist/doctor who is familiar with my condition is very important.
My neurologist is: _____________________________________Phone # _____________________
My DBS nurse is: _____________________________________Phone # _____________________
My family doctor is: ___________________________________Phone# _____________________
My home caregiver is: __________________________________Phone#_____________________
Additional medical support:
____________________________________________________Phone#_____________________
____________________________________________________Phone#_____________________
Optional: I concur with the above considerations: _______________________________________
Physician’s Signature:_______________________________
Please Note: This guide does not replace the orders of my admitting physician (s). I have chosen to
use this guide to encourage communication among all my physicians, nursing staff and myself.
Thank you for taking the time to review this document in order to improve my care.
□ I have an Advanced Directive. □ I have a Healthcare Power of Attorney.
* Drawing from the experiences of those who have contributed to this publication, we recommend that, if
hospitalized, you or your caregivers have sufficient copies of this leaflet to distribute: one to your admitting
physician, one for the nurse on each shift (4), one for the attending surgeon if surgery is to be done, and one
for the anesthesiologist.
Adapted from a document created by Parkinson’s Resources of Oregon and OHSU’s Parkinson Center of Oregon
Benadryl * *These can worsen confusion, particularly in elderly PD patients.
Patient Name: ______________________________ Date Updated: ________________ Page 4 of 5
MEDICATION DOSING AND DIETARY INFORMATION
Medication dosing, timing, and administration:
The timing of my medication is very important to help minimize my symptoms and “off” times. I
must be given my medication(s) promptly at the times specified. If this is not possible, consult my admitting physician for authorization to administer my own medication, or alternatively, to have it administered by my caregiver.
IN PARTICULAR, my carbidopa/levadopa (or Sinemet) must be taken 30-60 minutes before or two hours after my meals, because protein prevents the maximum amount of dopamine from reaching the brain. The relationship of protein consumption and medication timing greatly affects my condition.
If I am not able to swallow, my medications may need to be crushed and administered by a stomach tube (exception: Sinemet CR must not be crushed) or the dissolvable form— Parcopa®—should be ordered. If I am on Sinemet and Intravenous Protein (TPA) is proposed, my neurologist must first be contacted because the dosage may need to be adjusted.
PD and Surgery
1. If possible, stop MAO-B Inhibitors (Eldepryl/selegiline, Azilect, Zelapar) two weeks prior to surgery.
2. Pre-operative dosing instructions: There should be no reason to skip PD medications prior to surgery even if directions are NPO (nothing by mouth) for 6-10 hours prior to surgery.
Discuss with surgeon or anesthesiologist.
3. Restart PD medications post-surgery (except MAO-B Inhibitors) as soon as possible even if
NPO; discuss with surgeon.
4. Be aware that PD patients have a lower threshold response to analgesics (sedation/pain medications) and could experience hallucinations; however, this is not a contraindication (reason to avoid) their administration.
Patient Name: ______________________________ Date Updated: ________________ Page 5 of 5
Additional concerns / comments / other conditions for which I am being treated:
___________________________________________________________________________
___________________________________________________________________________
___________________________________________________________________________
NEUROLOGICAL ADVISORY
Ready access to a neurologist/doctor who is familiar with my condition is very important.
My neurologist is: _________________________________ Phone #____________________
My DBS nurse is: ________________________________ Phone # _____________________
My family doctor is: ________________________________ Phone# ____________________
My home caregiver is:____________________________ Phone#____________________.
Created by: Indiana Parkinson Center of Excellence
E-mail: info@iupdclinic.org
Website: www.iupdclinic.org
