May 19 - Dr. Heidi Musgrave talks on Depression and Dementia.
Jun 16 - Disasters and Disabilities. This program is rescheduled from January. A panel from the Red Cross, Police, Fire, and other emergency agencies will present how PWP can handle
emergencies.
Jul 21 – Unconfirmed at this time. Potential topics include constipation, osteoporosis, or podiatry.
Aug 18 – Caring and Sharing
Our April meeting featured the presenter, Dr. Fen Lei Chang, Dean of the IU Medical School's, IPFW Campus.
He presented an update on recent developments in medicines, treatments, therapies, surgeries, etc. He talked briefly about PD causes, then touched on the following topics:
Bio-markers for early diagnosis
Neuro-protection to change the course of the disease...the use of Rasagaline
Some of the new medicines over the horizon (how dosages can efffect PD symptoms)
Treatments for non-motor symptoms (sleepiness, fatigue, erectile-disfunction)
Deep Brain Stimulation (The need to be sure, as it is very delicate surgery)
Cellular transplants (directly into brain, reprogramming into neurons, use of our own stem cells)
Gene therapy (Injection of a benign virus into bloodstream to effect neurotransmitters into keeping muscle balance and reduce tremors).
Two wise thoughts were left with us: 1- The medicines we take should be making a difference or we should be asking why we need them, and 2- The more active you are, ie: exercise, the better off you will be!
Thanks, Dr. Chang
You can sit down and wait for old age to catch you up, or get up and get out and start walking in the opposite direction.
A NOTE FROM DAN SPANGLER
A VIEW FROM WITHIN
By Judi Smolin
For her father, Raymond Herbert McFee, who has Parkinson’s
Perhaps the bow of my head gives you the impression I am beaten.
Perhaps my posture presents a picture of resignation.
Do you see my shaking hands or my slowed pace, or my halting movement as frailty?
I am not beaten! I am not resigned, and I am not frail.
In my lifetime I have loved and received love. I love with all my heart now, as I receive your love… perhaps more quietly.
In my lifetime I have created beautiful things, accomplished wonderful things, and now long to share your creations, and your accomplishments.
I have been a rock and a saint, and as imperfect as any other. I stand before you now unchanged.
It is me – the son who achieved & engendered pride, the husband who walked through heaven and hell, the father who has loved totally and is profoundly loved in return.
With short steps I teach you patience.
With silenced words I teach you to listen.
As my strength ebbs, I teach you to be stronger.
So you see, I am "different", not diminished.
My strength is in my soul and in the opportunity I am giving you to be your best.
Presented to the FWPSG exercise class by Leah Huffman, nursing student at St. Francis University. Thank you, Leah. This is quite a challenge for those of us with Parkinson’s.
TIPS TO MAKE YOUR LIFE BETTER By Ed Gatke
This month's article is a continuation of G.E. Cordingley's column, Parkinson's Disease: Ten Tips for Patients. The focus last month was on getting the most benefit from your medication; this month's points 6 through 8 are on maximizing function, while 9 and 10 have to do with staying healthy.
6. Swallow your pride and use a walking stick. As symptoms of PD slowly worsen over the years, imbalance can make walking less safe and secure. Yet many patients avoid using walking sticks, canes or walkers. Sometimes they even buy these gait-stabilizing devices, but leave them in the closet, unused. I hear patients say they don't like the idea of "giving in" to the disease by using such devices. I usually reply that wounding one's pride is better than breaking one's hip in a fall.
7, Take advantage of useful gizmos. When loss of motor skills interferes with getting dressed, eating food or taking a bath, then it's time to make use of devices designed to make these other activities of daily living easier. Objects as low-tech as button hooks, dressing sticks, fat-handled utensils, large-buttoned telephones, grab bars and shower chairs can make life simpler and promote independence.
8. Mentally rehearse your next move. Sometimes getting out of a chair requires multiple attempts. Or, when walking is interrupted by a "freezing attack", an uncomfortably long period of time is required to get unfrozen and moving again. In these circumstances, the trick is to mentally rehearse the next move so thoroughly that you can actually picture yourself accomplishing it. Then, when you actually do try to move, you're more successful.
9. Maintain body weight. In patients with advanced PD, the mere act of chewing food can require so much work and effort that dietary intake plummets. If the patient is overweight to start with, this might be useful to a point, but continued weight loss can threaten health. In such circumstances, one should take advantage of food supplements that permit intake of important nutrients with a minimum of effort. This is a good time to indulge one's love of ice cream and milk shakes, which are packed with protein and calories, and require a minimum of chewing. Supplementing one's usual diet with a can or two of pre-packaged products like Ensure or Sustacal adds missing ingredients that prevent weight loss. Carnation Instant Breakfast provides many of the same ingredients, but at lower cost.
(Ed's note: Comments made in this column are not in any way intended to replace advice from your physician or other health professional. Neither does our inclusion of comments about specific products consist of an endorsement of them.)
10 Stay flexible by exercising. You've heard the expression, "Use it or lose it". As a saying, it is trite and overused, but in PD it is nonetheless true. By exercising the very movements that PD affects, one can improve them. The emphasis is on flexibility rather than strength-building. Although pumping iron can be helpful, too, one should focus on stretching, limbering and range of motion.
Depression in Parkinson’s disease
Everyone with Parkinson’s disease (PD) at one time or another gets the ‘blues’ and at least 40% of people with PD experience a major bout of depression. Depression of PD, however, has some unusual characteristics, and these unusual characteristics require special efforts to shed the depression. But it can certainly be done.
Depression in PD occurs for long periods of time in approximately 40% of persons with PD and it can occur for short bouts at one time or another in almost all persons with PD.
Beside the unpleasant mood characteristic of depression, depression can make all the other symptoms of PD much worse. When you are depressed, the motor symptoms seem worse, thinking becomes more difficult, relationships with others seem more strained and doing the daily chores become that much more difficult. When you have PD its simple: You can’t afford to get depressed.
Depression in Parkinson‘s Disease?
Distinctive characteristics of depression in PD (as opposed to depression in people without PD) include more intense worrying, brooding, loss of interest, pessimism, hopelessness, suicidal tendencies, social withdrawal, self-depreciation, ideas of reference, and anxiety. There is the usual sadness but little guilt or self-reproach, a high rate of anxiety symptoms, a relative lack of delusions and hallucinations, and a low suicide rate though thoughts of suicide are not uncommon.
Causes of Depression in Parkinson‘s Disease?
You would think that this question would be a ‘no-brainer’ right? What causes depression in PD, you say, is the condition PD itself: Its relentless course and ever continuing taking, taking, taking from you. But there is a problem with this simple answer. Not all people with PD experience long-lasting depression. When you get depression, it is not necessarily related to the severity of your symptoms or duration of the disease.
When we compare brain activity patterns of PD patients with depression versus PD patients without depression who are at equal disease severity levels, we find that the PD patients with depression exhibit lower brain activity levels in a portion of the brain known as the orbitofrontal cortex. This pattern of low activity in the orbitofrontal cortex was strongly related to the degree of depression experienced by patients with depression. Now the orbitofrontal cortex is that area in the brain where we experience and evaluate pleasurable rewards of various kinds from the mundane rewards of a good meal to the highly abstract rewards of prestige and influence. Dopamine fibers normally regulate operations in the orbitofrontal cortex. When these dopamine fibers degenerate, as they do in SOME, not all, persons with PD, the ability to normally experience pleasure and the ability to anticipate future rewards becomes difficult.
Who Gets Depressed?
So as we have just seen you can have PD and not get to badly depressed or you can have PD and experience long-lasting and severe depression. What factors determine who gets the long-lasting variety of depression? If the dopamine fibers that travel to the orbitofrontal cortex become damaged then depression becomes more likely. So, what leads to the orbitofrontal damage and what protects the orbitofrontal cortex?
The short answer is that we do not know. It may be that faster progressing forms of PD are more likely to invade orbitofrontal areas. Patients with long-lasting depression in PD tend to have younger-onset forms of the disease and are at first less motorically impaired (damage at first more severely affects orbitofrontal rather motor areas of the brain). Akinetic-rigid PD is associated with higher rates of depression (38% vs. 15%). Patients with predominantly right-sided motor symptoms have also been shown to have more depressive symptoms.
Depression and Apathy In Parkinson’s Disease
Apathy is defined as a generalized loss of interest and motivation to do anything at all… without, however, the loss of pleasure in things once found pleasurable. Depression is typically associated among other things, with loss of pleasure in things once found pleasurable.
Depression and Cognitive Impairments
Cognitive impairment, particularly with respect to decision-making capacity, planning and abstract reasoning are almost always negatively affected by depression of PD. Long-lasting depression also makes you more vulnerable to later dementia.
Depression and Anxiety Disorders
Symptoms of anxiety, including panic disorder, social phobia, and generalized anxiety disorder, have been found in up to 40% of depressed PD patients.
Treatment of Depression in PD
The good news is that effective treatments are becoming available to treat depression in PD.
Selegiline, a monoamine oxidase type B (MAO-B) inhibitor, can have antidepressant effects when given in doses of doses of 30 to 40 mg –- far above the range to treat motor symptoms.
At such doses, you need to follow a tyramine-free diet and restrict the use of certain medications (such as meperidine). You should also consult your doctor before taking any other medications, particularly anti-depressant medicines, when you are taking seligilene or other MAO inhibitors.
The dopamine agonists pergolide and pramipexole may have anti-depressant effects in some patients.
The classic anti-depressant SSRIs (selective serotonin reuptake inhibitors) have shown some effectiveness in treating depression of PD but no convincing studies have been done.
Nefazodone, a mixed serotonin-receptor antagonist and reuptake inhibitor, was as effective as fluoxetine in treating depression in PD in a small study.
A relatively new treatment, repetitive transcranial magnetic stimulation (rTMS) has demonstrated antidepressant effects in PD patients. Here the doctor magnetically stimulates different parts of your brain so that more dopamine is released. But at present the use of rtMS is not widely available.
Nortryptiline inhibits the inputake of norepinephrine, and is used to treat the symptoms of major depression.
Sources: McDonald, W.M. (2008). Depression. In: Parkinson’s Disease: Diagnosis and Clinical Management: Second Edition Edited by Stewart A Factor, DO and William J Weiner, MD. New York: Demos Medical Publishing; pps. 159-173. Menza M, Defronzo Dobkin R, Marin H, Mark MH, Gara M, Buyske S, Bienfait K, Dicke A Neurology. 2008, Dec 17. Starkstein S. & M. Merello (2002). Psychiatric and Cognitive Disorders in Parkinsons’s Disease. Cambridge: Cambridge University Press.
taken from www.parkinson.about.com
Parkinson’s Disease Dementia
Parkinson's disease dementia (PDD) is a type of dementia that occurs when a patient with Parkinson's disease develops a progressive dementia at least two years after a diagnosis of Parkinson's disease has been made, and other causes of dementia have been ruled out. Approximately 25-30% of all patients with Parkinson's disease also have dementia, but after having Parkinson's disease for 15 years, the prevalence of PDD increases to 68%.
PDD is usually different in how it presents itself from Alzheimer's disease: In PDD, for example, people usually have major problems with attention, executive functioning, and memory retrieval. In Alzheimer's disease, the memory problem is more often one of storing memories. People with PDD may also have more insight into having a memory problem than people with Alzheimer's disease.
Diagnosing Parkinson's Disease Dementia
A key to identifying PDD is the development of cognitive problems that are severe enough to affect daily functioning. The Mini-Mental State Examination (MMSE) is a screening test that is often used to help diagnose both Alzheimer's disease and PDD.
Dementia is common in people with Parkinson's disease, especially since the average age of onset of Parkinson's disease is 60 and the longer a person has it, the more likely they are to develop dementia. Being male and having visual hallucinations are strong predictors of developing dementia in people with Parkinson's disease.
Another type of dementia in which visual hallucinations are common, and that is related to both Parkinson's and Alzheimer's diseases, is called lewy body dementia. In fact, lewy bodies are found in the brains of people with PDD, lewy body dementia, and even some people with Alzheimer's disease.
Treating Parkinson's Disease Dementia
Presently, there is only one FDA-approved treatment for PDD. The Exelon patch (rivastigmine transdermal system) and Exelon (rivastigmine tartrate) capsules are indicated for the treatment of mild to moderate dementia of the Alzheimer’s type and mild to moderate dementia associated with Parkinson’s disease.
Sources: Aarsland D, Zaccai J, Brayne C. A systematic review of prevalence studies of dementia in Parkinson’s disease. Mov Disord. 2005;20:1255-1263
Dubois B, Burn D, Goetz C, etal. Diagnostic procedures for Parkinson’s disease dementia: recommendations from the Movement Disorder Society Task Force. Mov Disord. 2007;22:2314- 2324.
Essential information about my Parkinson Disease
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 your situation.
This was presented in an earlier newsletter, but we think that it is important enough to run it a second time for your convenience. It can also be found on the FWPSG website.
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/levadopa))
• 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 caregiver 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.
