Category Archives: Parkinson’s

Here’s a WebMD article on some research that shows that PD is associated with pain. “The type of pain that the Parkinson’s patients most reported was related to ‘dystonia’ — involuntary muscle contractions.” Many list members here experience this sort of pain.

Here’s a link to the WebMD article and the full text:

http://www.webmd.com/parkinsons-disease … ns-sets-in

Pain Shows Up as Parkinson’s Sets In
Study Shows Pain Is Felt at Onset of Parkinson’s Disease

By Kelley Colihan
WebMD Health News
Reviewed by Louise Chang, MD

Sept. 8, 2008 — Parkinson’s disease has no known cure, although it is treated with several medicines. The movement disorder takes its time developing; it can go unnoticed for years, or show up initially as just a small shaking in your hand.

New research shows that another thing to look for as Parkinson’s takes hold is pain.

The study, led by Giovanni Defazio, MD, of the University of Bari, shows that people with Parkinson’s have more pain than those who are disease-free.

Researchers found that the pain seems to show up with the onset of the disease or shortly thereafter.

The research team looked at 402 patients who had Parkinson’s disease, comparing them to 317 people who did not have the disorder.

The groups were similar in ages (mid-60s) and the proportion of men and women.

However, more Parkinson’s participants had depression and medical conditions associated with pain symptoms, such as diabetes and herniated discs.

Taking into account age, sex, depression, and other medical conditions associated with pain, 70% of the Parkinson’s patients said they experienced pain lasting at least three months, compared with 63% of the comparison group.

The type of pain that the Parkinson’s patients most reported was related to “dystonia” — involuntary muscle contractions.

Among the Parkinson’s patients, 17% had dystonia. Dystonic pain was more commonly located in the leg, foot, neck, or shoulders.

When it came to pain that was nondystonic, rates were similar between Parkinson patients and the comparison group.

The researchers write that the brain area damaged in Parkinson’s is also involved in pain perception, so this “might at least partly account for the increased risk of pain.”

The average age for the onset of Parkinson’s disease was 60.

The researchers write that pain should be considered an important feature of Parkinson’s disease since it often begins at the onset of the disease or soon after.

They add that the findings could help lead to better treatment strategies for people with the disorder.

Here are “10 Tips for Managing Slowed Communication or Thinking” by the Parkinson’s Disease Foundation and, beneath that, a fact sheet by PDF on “Coping with Dementia.” Some of the “10 Tips” apply to everyone, whether there’s dementia or not. (PWP = person with Parkinson’s)

10 Tips for Managing Slowed Communication or Thinking

1. Consciously slow your rate of speaking to ensure that the PWP is able to process everything you say, and give ample time for them to respond.

2. Avoid overloading memory processing by asking closed questions that invite “Yes” or “No” answers.

3. Organize daily activities to maintain an active mind, such as listening to music, reading, completing puzzles or making time for hobbies and games.

4. Utilize “to do” lists for daily tasks so that the patient can follow the list to accomplish a given task.

5. Place a large calendar in a frequented place with appointments or events written in for each day.

6. Provide clothing that pulls on or has Velcro closings, arranging them in the order in which they should be put on.

7. Make signs using pictures or objects rather than words and place them on the doors of the corresponding rooms.

8. Medical supplies may be kept under lock and key if there is danger of confusion.

9. Have an ID wrist bracelet or pendant to hang around the neck imprinted with the patient’s name, telephone number and diagnosis.

10. Utilize nightlights if confusion or hallucinations are present to make sure that the PWP doesn’t have to walk into a dark room.

http://www.pdf.org/Publications/factshe … _Sheet.pdf

Coping With Dementia: Advice for Caregivers
Reprinted from the PDF News, Spring 2003
Parkinson’s Disease Foundation

Parkinson’s disease is known primarily as a disorder that impairs movement. For some people with Parkinson’s (PWPs), however, there are other disabling symptoms of Parkinson’s. Coping with dementia, including difficulties with memory and slowed thinking or communication, is a challenge to PWPs and caregivers alike. Recognizing the signs and designing appropriate coping strategies can enhance a PWP’s level of function as well as self-esteem.

So, while the subject of this article will certainly not pertain to all of our readers, we hope it can be of benefit to those who may be faced now or later with these symptoms, as well as to those coping with caring for them.

At the outset it is important to understand that memory lapses, confusion or slowed communication can be due to a variety of problems such as stress, medications or depression. Therefore, patients who experience such problems should discuss them with their doctors before jumping to conclusions about their thinking difficulties.

When discussing dementia, we often think about Alzheimer’s disease, in which people experience memory difficulties, but also may have
problems such as making mistakes with words or trouble planning and performing daily tasks. In fact, dementia in PWPs may be due to
coexisting Alzheimer’s disease. However, dementia in Parkinson’s can take a somewhat different form and so it often presents a quite different set of challenges. In addition to forgetfulness, thought processes can be slowed, with long lags before answering a question and with
slowed processing of ideas. There can be difficulty concentrating and in particular a lack of drive or initiative, with caregivers complaining that a PWP has become more passive. Visuospatial processing can be impaired; this can lead to difficulties with everyday tasks such as driving, dressing or even inserting a hearing aid.

An important part of any discussion with the PWP’s doctor is to evaluate how medications may contribute to their symptoms, and to take any steps necessary to simplify the treatment regimen, eliminating those medicines that could worsen thinking difficulties, such as anticholinergic or sedative preparations. Moreover, PWPs with dementia may be particularly prone to confusion and hallucinations as side effects of some of the medications used to treat Parkinson’s disease. Second, it is important to distinguish dementia from depression, a common complication of Parkinson’s disease. Depression sometimes leads to slowed responses, poor concentration and forgetfulness, and if recognized is amenable to treatment. Third, a number of medications are now in use that may augment memory and all-round cognitive
abilities and their use can be discussed with the doctor.

Importantly, there are a number of changes that can be made to help PWPs cope with such difficulties, and keeping life simple is the best way of ensuring that he or she will be able to continue to participate in normal activities as effectively as possible, and maintain a degree of independence for as long as possible.

For example, to help overcome slowed thinking, instead of communicating at the “normal” rate, try to make eye contact and slow down your rate of speaking, to ensure that the PWP is able to process everything you say. Leave ample time for their response and avoid interrupting
or finishing their sentences for them. Try not to ask open-ended questions such as “What would you like to drink for breakfast?”. Instead, provide examples and choices with closed questions, such as “Do you want coffee?”. “Yes or no” answers are easier to give either verbally
or with a nod of the head. A simplified home environment can reduce the risk of confusion. Removing clutter and unneeded furniture or little-used kitchen items and appliances is one way of going about this. Another is putting away items you do not want your PWP using.

These include blenders, food processors and sharp knives in the kitchen; ladders, step stools and tools in the garage or basement. Medicines may be kept under lock and key if there is a risk that the PWP may become confused with the doses.

We all know the importance of maintaining a regular exercise regimen. Likewise, mental exercise and activity are important to maintain agile thinking. Exercises can include working crosswords or “seek and find” puzzles, card games, reading or listening to music, keeping a daily diary (also a good memory jogger when reviewed) and pursuing favorite hobbies. Physical activities can also be incorporated — for example, exercising to music or dancing. Again, it is important to realize that these tasks may take much longer to accomplish and patience is a keyword.

For the patient who may have difficulties remembering the sequence of steps to be taken for a particular task, make lists using large print or demonstrate each step so that the PWP can mimic and follow. A “to do” list can be very helpful. For example in the bathroom, a morning list depending on the patient’s abilities/limitations might include:

MORNING ROUTINE
• Brush hair
• Brush teeth
• Flush toilet
• Wash hands
• Turn off light when leaving.

Each step listed should be as simple and straightforward as needed. Remember that these lists may have to become more detailed as time passes. Performing activities of daily living in the same order each day also provides structure and minimizes confusion.

Placing a large calendar in a frequented place (e.g. the kitchen or next to the bed), with appointments or events written in for each day, is another way of helping the PWP to become more independent. This can be reviewed along with a list of tasks for the day on a daily basis.

Another important area to consider is dressing. The message here is to keep it as simple as possible. Have the PWP wear pull-on clothes or clothes that have zippers or only a few buttons in the front, or with Velcro closings. Lay out or stack the clothes in the order in which they should be put on, with socks and underwear on top. If the patient insists on wearing the same thing day after day, buy several identical pieces so you can assure him or her of clean clothes without having to wash them every night.

Make signs on doors utilizing visual and word cues. For example, as well as printing the word “bathroom,” put a picture of a toilet on the door, or a picture of a bed, as well as the word “bedroom” on the bedroom door.

If mental confusion or hallucinations are present, a dark room can arouse all sorts of scary images. Accordingly, you should consider installing nightlights that automatically go on when a certain level of darkness is reached. This way, your PWP never has to walk into a completely darkened room.

By keeping tasks and questions simple for the patient with thought-processing difficulties, and by preventing situations in which a confused individual can get himself or herself into trouble, you can eliminate a great deal of the frustration that can arise routinely. And just as important, it can allow the PWP to continue to function and manage parts of his or her own life. This can help with the responsibilities of the caregiver while giving the PWP a sense of accomplishment and involvement in home and life. It is important to reiterate that memory problems, slowed thinking and confusion do not come automatically with Parkinson’s, to be endured by all. But these problems can co-exist and we believe that the best strategy is to be prepared.

Thanks to the Alzheimer’s Disease and Related Disorders Association (ADRDA) for some of the suggestions mentioned above. Although not specifically for Parkinson’s disease, readers may contact the ADRDA headquarters for further information at: 919 North Michigan Avenue, Suite 100, Chicago, IL 60611 or by phone, (800) 272-3900 or by finding chapter details in a local directory. Further information is also
contained in ‘Parkinson’s Disease: A Self-Help Guide’ by Marjan Jahanshahi, M.D., and C. David Marsden, M.D., published by Demos Medical Publishing in 1999.

Jeanne Rosner, Parkinson’s Disease Foundation, and Claire Henchcliffe, M.D., DPhil, Center for Parkinson’s Disease and Other Movement Disorders.

The Parkinson’s Disease Foundation (PDF) hosted a symposia on Parkinson’s on July 18, 2008.  The overall topic is “Mind, Mood and Body: Understanding Nonmotor Symptoms of PD.” Here’s a link to the archived recording of the symposia:

event.netbriefings.com/event/pdf/Archives/nonmotor/register.html

There was a terrific question and answer session with panelists.  The panelists were:

• Peter LeWitt, M.D., Henry Ford Hospital
• Doree Ann V. Espiritu, M.D., Henry Ford Hospital, geriatric psychiatrist
• Edwin B. George, M.D., Ph.D., Wayne State University School of Medicine
• John L. Goudreau, D.O., Ph.D., Michigan State University, neuro-ophthalmologist
• Matthew Menza, M.D., Robert Wood Johnson Medical School
• Ronald F. Pfeiffer, M.D., University of Tennessee Health Science Center, neurologist

I’ve copied below notes that I took from the Q&A session with the panel.  (Time markings refer to the time in the recording, should you want to check out the original source yourself.)

Robin
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Question:  (43:57)  Relationship between impulsive behavior and PD?

Answer by Dr. Menza:  Impulse control disorders are major personality changes.  This happens largely due to medication.  Can happen with Sinemet but is more of a problem  with dopamine agonists.  Please talk to your physician about these problems as they are treatable.

Answer by Dr. LeWitt:  There is no profile for who is going to get these.  These behaviors can begin years after meds begin.

Question:  (46:38)  Are hallucinations caused from the disease or the meds?

Answer by Dr. Espiritu:  Some of the meds can cause hallucinations.  When dementia starts to develop, the risk for hallucinations increases.

Answer by Dr. George:  People with DLBD (diffuse Lewy body disease) can develop hallucinations without being on medications to trigger them.  We don’t have the answer how much pure PD in the absence of meds can trigger hallucinations.

Question:  (49:05)  Is losing sense of smell 20 years prior to diagnosis a coincidence or is this connected?

Answer by Dr. Pfeiffer:  Loss of sense of smell is a common and early finding in PD.  Many may not realize it.  This can happen much earlier than the onset of motor symptoms.  Twenty years is a long time but this could still be seen as being part of PD.

Question:  Any suggestions for erectile dysfunction when Viagra and similar meds don’t help?

Answer by Dr. Pfeiffer:  (50:27)  There are a variety of methods that can be used to treat ED, including injections, vacuum devices, rings, etc.  Urologists know about this.

Question:  What’s the impact of caffeine on PD?

Answer by Dr. LeWitt:  A study showed that neither PD tremors or essential tremors are worsened by caffeine.  (52:12)  Doesn’t seem to be any downside of caffeine.  Long term studies show that caffeine intake correlates with less progression of PD and lower incidence of PD.

Question:  What can we do about dizziness?

Answer by Dr. LeWitt:  Don’t accept the word “dizziness.”  Pin down what this means.  “Dizziness” is non-specific.  No medication can really help with this.  Is this:  low BP, inner ear problem, balance mechanism problems?

Question:  (54:19)  Is there a connection between nightmares and PD?

Answer by Dr. Menza:  Clinically, we worry that someone who develops bad nightmares may be in the early stages of developing hallucinations during the day.  So we want to know if there’s any problem during the day.  And, there are a number of sleep disorders that can include nightmares.

Question:  (55:37)  Is there any evidence that Seroquel is any more effective than Risperdal in treating hallucinations and behavioral problems in late stages of PD?

Answer by Dr. Menza:  Seroquel and Risperdal are antipsychotics.  Risperdal is a drug that I would not encourage those with PD to use.  Most of those with PD will not tolerate Risperdal.  It makes their PD worse.  There may be exceptions.  I don’t know if there’s any efficacy difference but there’s a tolerability difference.

Question:  (58:19)  Does DBS help with pain?

Answer by Dr. George:  Good question.  We don’t know.  There is some reason to think it would help.  But we usually wouldn’t use that sort of symptom as an indicator to go ahead and do this surgery.

Question (by Dr. Menza):  What do you think the relationship between pain syndromes and depression in PD is?

Answer by Dr. George:  (59:38)  Pain complaints are a major issue in those with depression.  They can certainly co-exist.

Question:  What’s your experience in using Ritalin to treat the symptoms of PD?

Answer by Dr. Espiritu:  (00:20)  Ritalin is a medication given for attention deficit disorders.  In geriatric patients, Ritalin (in the morning) can be used to augment an antidepressant (such as Zoloft, Paxil); it helps with fatigue and alertness.  There are no studies of Ritalin in PD.  Sometimes it is considered where there is extreme fatigue.  Another med that is used is Provigil.  A possible drawback can be anxiety, especially if the patient is already anxious.

Question:  (02:00)  Correlation between young-onset PD and seizures?

Answer by Dr. LeWitt:  Not aware of any connection.

Question (by Dr. LeWitt):  What is the connection between exercise and doing well with PD?  Is there evidence of this?

Answer by Dr. LeWitt:  There is lots of animal research (in animals with PD) that shows that exercise helps PD motor symptoms.  The evidence is convincing.

Answer by Dr. Pfeiffer:  In one study, the human equivalent would be a marathon a day for the amount of exercise the mouse got.  But there are human studies coming out of the Univ of Memphis that show that exercise helps.

Question:  Can loss of sense of smell be in both men and women?

Answer by Dr. Pfeiffer:  Yes, both men and women.

Question:  (04:15)  My wife is losing her teeth.  Her dentist told her it is due to the lack of saliva in the mouth from medication taken for PD.  Is this true?

Answer by Dr. Pfeiffer:  There is a literature on dental problems in PD, but it’s confusing.  Some reports say that people with PD have more dental problems due to the absence of saliva and the change in saliva pH.  On the other hand, there have been studies (one out of Japan in particular) showing that PD patients have better teeth.  It seems possible that absence of saliva could leave to poor dental care, gingivitis, and ultimately to loss of teeth, though this isn’t a common problem.

Answer by Dr. Goudreau:  (05:39)  The dentist could be referring to anticholinergic meds (such as Artane) which can dry up saliva quite remarkably.

Question:  (06:03)  Why is there an increase in muscle cramps in PD and what is recommended?

Answer by Dr. George:  Are we talking about dystonia or simple muscle cramps?  PD patients can get dystonic contractures which can occur as a result of medication (peak dose) and as a wearing-off effect of medication.  We typically see people with dystonia of the feet early in the morning from wearing-off of PD meds.  This can be confused with nocturnal leg cramps.  There could be a separate problem of neuropathy.  Have to sort out what sort of cramping the patient is experiencing.

Question:  Any contraindications for caffeine and Azilect?

Answer by Dr. LeWitt:  None known.  There are some foods to avoid with Azilect (rasagiline).  (07:51)

Question:  Treatment of compulsive behaviors.  If off agonists and behaviors persist, is the only choice to reduce Sinemet?

Answer by Dr. Espiritu:  The compulsive issues are very destructive in relationships.  After you’ve tried to decrease the meds that potentially cause these behaviors, and the behaviors persist, we need to take into consideration other meds, such as those for bipolar disorders.  For example, Depakote and lithium.  But these meds contribute to tremor and can worsen PD symptoms.  Antipsychotics are another choice to calm the behavior.  Have the patient see a therapist.

Question:  (10:15)  Is there a time late at night when you shouldn’t exercise?

Answer by Dr. Menza:  As best I understand, you can exercise any time you want.  It always helps with sleep.

Question:  Is sleepiness a biomarker for PD?

Answer by Dr. Menza:  As far as I know, no.

Question:  (11:05)  How do you treat the loss of libido in women?

Answer by Dr. Espiritu:  There was once talk about a nasal spray that was being tested in a small study in women.  There are many psychological issues that need to be addressed with regard to one’s libido.

Question:  (12:37)  Heavy-sweating in PD.

Answer by Dr. Pfeiffer:  40% of PDers have problems with increased sweating.  Usually face, neck, and maybe chest and arms.  Can be precipitated by activity (too much tremor or dyskinesia).  This can happen out of the blue.  Sometimes clothes have to be changed.  Presumably this occurs because of autonomic dysfunction.  This is bothersome but not dangerous.  Treatment is problematic.  I haven’t found an effective treatment for this — not botox, not propanolol.  If it’s due to dyskinesia or wearing-off, controlling PD symptoms should be addressed.

Question:  (15:30)  Impairment in visual-spatial processing.

Answer by Dr. Menza:  Complicated to sort out what in your environment you are going to pay attention to.  Maybe some of the AD drugs will help (maybe Namenda).  Obsessive-compulsive disorder is sometimes seen in PD.  It’s an anxiety disorder.  Treatment in PD is the same as treatment for OCD without PD.

Question:  (17:54)  Creatine, CoQ10, etc.

Answer by Dr. LeWitt:  No effectiveness seen in CoQ10.

Question:  (18:40)  How do you get involved in trials?

Answer by Dr. LeWitt:  See pdtrials.org (he said .com but it’s .org)

Question:  How can we slow PD?

Answer by Dr. LeWitt:  We don’t know.

Question:  What about gene therapy?

Answer by Dr. LeWitt:  There are several studies going on and some planned for in the US.

Question:  (20:40)  Can swollen ankles be caused by PD or PD meds?

Answer by Dr. George:  This can be a side effect from dopaminergic agents.  Also, there are changes in vascular tone that can occur in PD.  Other things can cause this such as heart failure.

Question:  What do you know about Azilect?  Can this halt progression of PD?

Answer by Dr. Pfeiffer:  There’s a clinical trial that’s been going on for several years now in Azilect.  News has been coming out about this trial.  The formal report has yet to be released.  Pre-clips have been released.  We don’t know which 2 of the 3 study objectives were met.  In August, the study results will be presented at a meeting in Spain.  At this point, the answer is “maybe.”

Question:  (23:40)  What is the danger of discontinuing Sinemet suddenly?

Answer by Dr. Goudreau:  One danger is NMS (neuroleptic malignancy syndrome).  Life-threatening syndrome.  This is rare.  Other danger is the risk associated with profound immobility that insues from stopping Sinemet:  increased risk of deep vein thrombosis, respiratory infections, etc.  “Drug holidays” have been discontinued because of these risks.  Sudden discontinuation of Sinemet is not recommended.

Question:  My “get up and go” has gotten up and went.  Can you address this?

Answer by Dr. Espiritu:  Apathy is common in PD.  Different from depression.  In apathy, there’s no drive to do anything.  Need to rule out depression.  Talk to a therapist about this.  Use of stimulants has not been studied.

Answer by Dr. LeWitt:  (26:33)  Medication trial in apathy is going on in a small way.  It’s not treated with anti-depressants.

Question:  Benefits of metronome therapy?

Answer by Dr. LeWitt:  This is undergoing research now.

Question:  (27:28)  What is being done to help with cognitive problems?

Answer by Dr. LeWitt:  There are some medication trials being studied for this.

Question:  Neupro patch.

Answer by Dr. LeWitt:  It will likely be returning to the market in the US next year.  Benefits of over-night effects.

Question:  How does someone decide to stop driving?

Answer by Dr. George:  There are many non-motor symptoms that affect driving.  Speak with your physician if you or your family has concerns about driving.  Often an occupational therapist can do a driving evaluation.

Question:  Music therapy.

Answer by Dr. LeWitt:  This is part of the symposium in September.  People with gait problems have been able to overcome these problems with music.

Question:  Balance and walking problems due to PD.

Answer by Dr. Pfeiffer:  Multi-factorial due to the case.  Does falling and hitting one’s head disrupt the inner ear?  Probably.  Balance problems occur later in PD.  If it occurs early in PD, you ares probably dealing with a Parkinson’s Plus syndrome.

Answer by Dr. George:  Antivert is a drug that suppresses the balance organ in the inner ear.  This drug can make your balance worse in PD.

Answer by Dr. Goudreau:  Important to determine if balance problems only occur when levodopa wears off.  Many things contribute to balance problems, such as a pinched disc, impaired vision due to cataracts, etc.  A physician needs to review this.  Balance is a common problem in PD but other reasons should be considered.

The Parkinson’s Disease Foundation (PDF) hosted a symposia on Parkinson’s on July 18, 2008.  The overall topic is “Mind, Mood and Body: Understanding Nonmotor Symptoms of PD.” Here’s a link to the archived recording of the symposia:

event.netbriefings.com/event/pdf/Archives/nonmotor/register.html

One of the panelists, Dr. John Goudreau, gave a good, albeit short, presentation on the topic of “Visual Impairment in Parkinson’s Disease.”  He is a neuro-ophthalmologist at Michigan State University.

Copied below are the notes I took from his talk along with relevant Q&A.  (The time markers refer to the time in the recording, if you want to refer to the original.)

Robin

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Speaker:  John L. Goudreau, D.O., Ph.D., Michigan State University

Visual impairment is a common complaint in PD and ageing.  Many of the non-motor symptoms are common in ageing.

Symptoms:

• decreased acuity
• “tired eyes”
• irritation (such as grittiness) or pain
• blurred or double vision
• visual-spatial confusion

Functional impact:

• decreased reading
• decreased driving
• risk factor for dementia and visual hallucinations
• contributing factor in falls

Causes of visual impairment in PD:

• decreased blinking and dry eyes syndrome
• quality of tears is poor
• convergence insufficiency
• loss of retinal dopamine (causing loss of color discrimination and loss of visual contrast sensitivity)
• brain pathology of PD (causing visual-spatial impairment)

Subtle changes in vision are apparent in early PD.  Is this a biomarker for early PD?  (38:45)  We could introduce neuroprotective drugs earlier.

Changes in retinal function progresses in parallel with PD.  Is this a biomarker for disease progression?

Treatment of impaired vision:

• hydration (aqueous drops 4-5 times/day, viscous or gel preparations, increase humidity in house, punctal occlusion for severe cases)
• prisms
• use of near vs. distance glasses
• dopaminergic medications can help vision (and vision may fluctuate along with these meds)  (41:30)

Q&A with the Panel

Question:  Any link between PD and pal optic nerves (sp?)?

Answer by Dr. Goudreau:  The optic nerve fiber layer is not the one that seems to degenerate in PD.  The interconnection cells are degenerated in PD.

Question:  (56:40)  Severe double vision.

Answer by Dr. Goudreau:  With any of these non-motor symptoms, PD may not be the only explanation for them.  Severe double vision can be due to PD.  Need to see an ophthalmologist.  This can be treated with prisms.  Cover up one eye when reading.  Alternate the patch.

Question:  (14:36)  How do you do an eye exam in someone who has difficulty communicating?

Answer by Dr. Goudreau:  There are limits.  But there are some basic parts of the exam that could probably still be done.

Question:  (15:30)  Impairment in visual-spatial processing.

Answer by Dr. Goudreau:  Challenging area.