Answers from the Experts

 


I'm wondering about the benefit of medical marijuana in advanced stages of Parkinson's-- for mobility but also for pain relieft and better sleep. Are there specialists in Edmonton who can help one learn how to administer this type of medicine?

There is a lot of interest in medical marijuana currently, but it should be recognized that there is very little research to support its use in most conditions, including Parkinson disease. It can be helpful in treating chronic pain and anxiety in some cases. It should be recognized that regular use can have side effects such as depression and memory loss. At this time, marijuana cannot be recommended as a standard treatment for PD.  If someone is interested in finding out more about whether it could help their symptoms, there are several special clinics that prescribe marijuana in Alberta that he or she can be referred to by a physician.

 


Will the drug primidone help my Parkinson tremor?

Primidone is a medication that has been used for several decades as a treatment for seizures. By chance, it was found that it also helped tremor in some individuals. It is now recognized that primidone does help essential tremor (a common tremor in the hands when holding objects) but does not help Parkinson tremor very much. It is also well known that primidone has many side effects such as dizziness, nausea, drowsiness, and is quite addictive. It is not used these days to treat tremor, as there are a number of better medications with less side effects available.

 

I'm experiencing pain in my lower back and my legs seem weak and shaky. Not all of the time, but especially in the morning when I get up. I do tai chi 2-3 times per week and even there I experience the same pain. Is pain part of PD? 

The short answer is yes, pain can be part of PD.  This can occur in several situations. First, if a person is on levodopa, and the effects of the last dose have worn off (such as in the morning before the first morning dose) there can be quite a bit of slowness and stiffness in the legs. This can produce an aching discomfort associated with a feeling of weakness.
The second type also typically occurs in the morning, or during the night, when the evening dose of levodopa has worn off, and results in a "Charlie horse" type of cramping in the legs. This can be very painful.  
The third type of pain can occur during the day as a "wearing off" phenomenon, when the pain comes along with the stiffness and slowness.  All three types of pain can be improved by appropriate adjustment of levodopa, or other PD medications.
However, there are a number  of other problems that can cause low back pain and weakness of the legs, such as a prolapsed disc, or arthritis, and a full evaluation by a physician should be done to make sure that there are no other factors contributing to the back pain.

 


My mom was diagnosed two years ago; over the last six months a lot of what she  has been eating has caused issues -- bloating, cramps, and pain to the point of vomiting. There doesn't seem to be a rhyme or reason as to what will set it off.  She has tried easy to digest foods -- while yesterday yogurt and crackers are fine -- today the very same thing causes her issues.  We are being told by her doctor that it iss just the medication and her doctor  doesn't seem interested in trying to help alleviate her discomfort.  TO date, Mom has lost 25 lbs and is constantly hungry but afraid to eat.  Any suggestions on possible diet options, over the counter remedies, or can you suggest alternate avenues for medical treatment?  We are out of options and any suggestions on where to proceed/what to do next would be appreciated.

It is now recognized that Parkinson disease does affect the gastrointestinal tract.  Symptoms such as bloating are not uncommon.  Constipation is very common.  Drugs used to treat PD, such as levodopae recommend that you speak to your mother's physician about a referral to a gastroenterologist for assessment.

 


My dad is 84 and has been diagnosed with Parkinsonism.  He is on levocarb and we reduced the dose recently with no major affect on his physical conditions.  The problem that is bothering him most lately is hallucinations.  His "pixies" keep him up at night with all the construction they do in his residence.  He used to understand that they were not real but now he says he has talked to them and they really do exist.  Should I continue to explain they are not real?  Should we try to get him some anti-hallucination drugs?

As the symptoms of PD advance, a common problem is the development of visual hallucinations.  At the beginning, the person with PD has insight into the fact that they are not real, but then this insight may be lost as is happening with your father.  The first step in treatment is making sure there are no other medical problems, such as urinary tract infection.  If everything checks out okay, the next step is review of the PD medications.  Some medications such  as amantadine and dopamine agonists can exacerbate hallucinations, and may need to be discontinued.  Secondly, the total dose of levodopa may need to be decreased.  If the hallucinations persist, there are several medications, such as quetiapine that can be used to decrease them.  Finally, the person would need to be evaluated to see if they are developing cognitive prob;ems, which could be contributing to the hallucinations.  This can be treated as well.  We encourage you to speak with your dad's neurologist to determine what tests need to be done, and the best treatment option.

 


My mother was diagnosed with Parkinson's about 15 years ago and she was able to manage her condition fairly well.  About 1.5 years ago she fell  and broke her hip, she had to have a hip replacement.  Since then she has gone downhill and one of her main complaints is the lack of oxygen close to her dose of dopamine.  She is terribly uncomfortable and we are wondering if this problem with breathing is because of her Parkinson's or if it is related to anxiety but we don't seem to find comfort for her.  She is getting very depressed.  Is there something we can do for her?  She has had lung tests, she has oxygen available but nothing seems to help.

When the dopamine level in the brain decreases in a person with PD who is taking levodopa, the symptoms are referred to as "wearing off." The motor symptoms of "wearing off" include tremor, slowness and stiffness.  Over the past decade, neurologists have become increasingly aware that there are many non-motor symptoms of "wearing off", including depression, anxiety, bloating and fatigue.  One of the main types of non-motor "wearing off" can be a feeling of shortness of breath.  Your description that your mother's symptoms of shortness of breath come on just before the next dose of medication is due, is very suggestive of this (and other tests have been normal).  The main treatment is adjusting the medications to prevent the "wearing off."  Please speak to the physician looking after your mother's PD about how the medications could be best adjusted.

 


My husband has just been diagnosed with a very rare disease called progressive supranuclear palsy (PSP).  Apparently this is a very rare brain disease that is also PD.  Can you tell me what medications are available to him?  He was given only six months to a year so it is very important that I get an answer and treatment soon.  Thank you in advance for your kindness on this matter.

PSP (or progrssive supranuclear palsy) is a condition that has a number of features that are similar to those found in Parkinson disease, such as stiffness, slowness in movements, and problems with gait and balance.  In addition, in PSP the affected individual may have problems with eye movements, particularly looking up and down, and problems with slurred speech and swallowing.  It is a slowly progressive neurological problem.  Life expectancy is years after diagnosis (not months unless very advanced).  The cause is not yet known.

 

Treatment is similar to that in Parkinson's.  Generally, we would use levodopa medications as this may help the slowness and stiffness.  Physiotherapy and exercise is important to help gait and balance.  Home care assessment can check the home for safety.  Assessment in speech therapy is helpful with speech and swallowing issues.

 

Although there is no cure, regular follow up in a multidisciplinary clinic is helpful with the problems listed above, and maintaining the best quality of life.  Support services are available through Parkinson Alberta.

 


I've heard about electromagnetic therapy and would like to hear if this is/can be utilized to treat Parkinson disease and of it's effectiveness?

Transcranial magnetic stimulation (TCM) has generated a lot of interest over the past several years, as it has shown to improve symptoms of PD in a small number of studies, for a short period of time.  It is still unclear how long the improvement lasts, or how much stimulation is required.  There are some potential side effects, such as epileptic seizures, so it needs to be used with caution.  It is not used for clinical therapy at this time.  Research is ongoing, and hopefully over the next couple of years, we should know more about its benefits, and if it will turn out to be clinically useful.

 


Is insomnia an effect of Parkinson's or a result of medication?  Currently on levodopa and levocarb.  Is taking a sleeping pill every night going to lead to a problem?

We cannot answer this question directly, as we require much more information about the type of insomnia.  When it began, the age of the person, and other medications they may be on. However, in general, having difficulty falling asleep is not a major feature in PD or the medications (outside of possibly deprenyl).  A more common problem is waking up during the night.  There are many potential reasons for this including stiffness, cramps, nightmares, and having to void.  Some of these can be treated by adjusting the levodopa dosing.

 

We recommend that you talk with your physician about it, and if needed, ask to be referred to a sleep specialist.

 

With respect to sleeping pills, again, we would need to know which medications are being referred to.  In general, a number of them are addictive, and should only be taken intermittently.  There are a number of natural remedies that can help with falling asleep, and again discussion with your physician or a sleep specialist may be helpful.

 


We have heard that pole (Nordic) walking can be helpful for people with PD; could you tell us more about this?

For most people, pole walking is a low impact, total body workout which activates more muscles and burns more calories than regular walking.  It can be done outdoors or indoors with tips.  Below is a list of specific benefits which makes pole walking an ideal activity for a person with Parkinson disease:

 

Adding poles to your walking program may not come easily to everyone due to coordination and attention deficits.  Practice may be required with a poling instructor or physical therapist to obtain your best walking pattern.  Pole walking is not recommended for persons with frozen shoulder, severe balance or vision impairment, or if adding poles makes your walking pattern worse.

 

A recent research study has shown that pole walking is as effective as LSVT BIG exercise program for improving cognitive aspects of movement preparation (Ebersbach et al, 2014).  Previous studies have shown an improvement in postural stability, stride length, gait pattern and gait variability (Reuter et al, 2011); as well as reducing physical in activity in PD and improving quality of life (van Eijkeren et al, 2008).

 

Lastly, join a walking group for added motivation and socialization.  Start at 1/3 your usual walking distance as the poles increase the intensity of the work out.  Make sure you drink enough water to stay hydrated and wear safe footwear for the terrain including spikes or coils over winter boots if it is icy out.

 


My husband has had PD for 20 years.  He is functional however has developed extreme fatigue over the last couple of years.  He gets spinal blockage shots for chronic back pain which alleviates the pain.  His thinking has slowed down and he has difficulty expressing his thoughts into words but his memory is fairly good.  Would taking DHEA lessen some of his fatigue?

Parkinson disease (PD) is a disorder that has multiple symptoms in addition to the tremor, stiffness and slowness of movement, and fatigue may be a prominent feature.  However, a number of other things can cause fatigue such as a lack of sleep and certain medications (meds).  It may also be due to the PD meds being too low.  In some cases the PD meds themselves can cause fatigue.  These factors and all meds should be reviewed by your husband's neurologist to determine if the fatigue is due to PD or other factors.  If it is due to PD there are some medications such as those used for ADHD that may be of help.

 

With respect to the slowness of thinking this is also quite common in PD.  The person should be given enough time to answer the question and not rushed as this will worsen the problem.  Increasing the PD meds may help as well.  Again, this should be discussed with the neurologist to determine if there is any evidence of cognitive dysfunction or other factors that could be contributing.

 

There is no evidence that DHEA is helpful in either of these problems and is not recommended for use in PD.

 


Does a person with rigidity have it bother them at different times throughout the day, or will it be the same time every day and how bad can it get?

First, rigidity is a medical term which refers to the tone of the joints and muscles on neurological exam.  What a person with Parkinson disease (PD) feels is stiffness and/or slowness.  These symptoms are an important part of PD.  When the individual is treated with a drug such as levodopa, the stiffness and slowness improves.  If the dose is too low, the person may feel stiff and slow all the time.  As the condition advances a symptom known as "wearing off" occurs.  This means that the levodopa benefit only lasts for 3-4 hours.  If the person is taking levodopa every 6 hours, for example, the stiffness and slowness will disappear for 3-4 hours, and then recur for the 1-2 hours before the next dose is taken.  In this case, the medication needs to be taken more often during the day.

 


I have significant gait issues.  I run into doorways, trip, easily tire during ambulation and look like a drunk when walking.  I fatigue very easily.  Should I see a movement specialist or PT?  My current neurologist has told me to walk more and take my pills.  Help.

It is important to take your medications on time and as prescribed by your neurologist along with practicing your walking daily.  A physical therapist (PT) with experience in treating PD can assess your walking and determine what components of gait are causing the problems you are experiencing.  Some of the components we look at are: range of motion, strength, balance, coordination, rigidity (stiffness), bradykinesia (slowness), posture, proprioception and visual neglect.  Recommendations, exercises, and/or treatments to address those impairments can be started.  A variety of walking strategies or cueing techniques to improve walking pattern, speed, step length, arm swing, and toe clearance may be taught.  Researched treatments for PD like LSVT BIG, Nordic pole walking, treadmill training, etc. may also be helpful.  Education on fall prevention and the use of walking aids like canes and walkers might be considered.

 

If you or your PT think that your PD medication is not optimized, then a consult to a neurologist who specializes in movement disorders could be beneficial.

 


My wife has been diagnosed with PD for 15 years.  Last July she went into delirium for months and lost the use of her legs.  I wonder if a physiotherapist would help in getting any movements?

Delirium can occur in people with PD due to a variety of factors, such as too much medication, hospitalization, infection or other illness.  As these factors are corrected, the delirium gradually clears.  It would be expected that the individual would return to the same condition as he or she was in prior to the delirium.  It is unusual for there to be permanent effects of the delirium.  In particular, there should not be an effect on gait or mobility.  Your wife should have a thorough medical evaluation to assess if there is another cause for the difficulty walking.  Once this is determined, an assessment by a physiotherapist would be helpful to help with mobilization.

 


I am 54 years old and had DBS (Deep Brain Stimulation) surgery 3 years ago; and ever since I have had balance issues, strength and stamina issues.  I have an underactive thyroid, but that is under control.  I have been working with neuro-nurses and 'Medtronics' developers (DBS developer) to get my brain to tell my foot to straighten up so I can walk right, and I'm frustrated as I've gained weight and can't do exercises as the above mentioned gets in the way.  Since DBS, I have been Parkinson disease drug free.  Any suggestions would be appreciated!  Thanks!

Without knowing more about your medical history, there are a couple suggestions you may want to consider.  A referral to a physical therapist who is experienced in Parkinson disease could help you with your gait, balance and strength.  They can recommend exercises that you will be able to do with the limitations you describe.  Being able to participate in physical activity is important for people with Parkinson disease and may help you lose some of the weight you have gained.  (It is documented that weight gain can occur with deep brain stimulation.)  A dietician can also be a great resource to provide advice on how to reduce weight in a healthy way.

 

It may be helpful to follow up with your neurologist and DBS team to review your current therapy to see if it may be an option to reintroduce medication for your Parkinson's.  If this is an option, you may need to have your stimulation parameters adjusted.  As Parkinson disease progresses, you can anticipate the need for adjustments to be made to either the stimulator or medications. 

 


My wife has recently been diagnosed with Parkinson's.  She is 51 and has always had the "family tremor" in her right hand.  I have heard that women presenting at an earlier age than average may have slower than average onset of the disease.  Is this something you've heard to be true?.

Parkinson disease is a slowly progressive disorder.  There is some research to suggest that people with Parkinson's who have tremor as the first symptom may have a slower rate of progression than others.  Women may have a slower rate of progression as compared to men.  However, as their is significant variability from person to person, we cannot predict how slowly or quickly each individual will notice progression of their symptoms.

 

For anyone, the most important thing that may slow down progression of PD appears to be regular exercise, at least 3 hours per week.  We encourage everyone with PD to exercise regularly.

 


When I sleep my joins and muscles feel like they are full of water, heavy and hard to move.  Any ideas?  I see a therapist in the CAR program.

If your last dose of medication is early in the evening, you may be wearing off - that is the benefit of the medication may have worn off.  You may speak to your neurologist about adjusting medications - including increasing the dose at bedtime, considering the use of longer acting medications (if appropriate), or taking a dose of medication when you normally wake in the night to visit the bathroom.

 

One of my patients decided not to use medications and instead did yoga in the night and found this helped.

 


Has there been any studies regarding acupuncture in relation to relieving symptoms of Parkinson's?

Although a recent review of many studies did not find evidence for long lasting benefits of acupuncture, a recent study using special MRI imaging found that acupuncture to the GB 34 region resulted in increased brain activity that was different from non-PD subjects though this did not translate into changes in function.  Of note, the practitioner was an eastern medical doctor with five years of acupuncture experience and followed the World Health Organization guidelines for performing acupuncture.  He also used stimulation with insertion of the acupuncture needles.

 


Is there any hurry to try PD drugs if one is having symptoms but not ready for the diagnosis?  Also is exercise and diet effective at holding PD at bay for a while?

The diagnosis of Parkinson disease is based on a patient's history, detailed neurological examination and response to medication.  Medications used to treat Parkinson's are symptomatic (ie: reduce symptoms) but are not disease-modifying.  As a result, there is no need to "hurry" to initiate treatment, but rather medications should be prescribed when patients are functionally impaired by their symptoms.

 

Regular exercise and a healthy, balanced diet are strongly recommended for patients with PD.  An exercise program has many benefits for bpth motor and non-motor symptoms of PD.  Recent studies in animal models of PD have shown that exercise may have some neuroprotective effects.  Exercise in PD is under intense investigation in human clinical trials.

 

With the recent donation of John Forzani's brain to concussion research, it opens the discussion whether there are any Canadian, or even Albertan, options for the donation of brains for Parkinson research?

This is an excellent question.  Having the ability to study the brains of people with PD after death is important for neurologists and researchers who work in this area.  This is both to confirm the diagnosis as well as to get a better understanding of the underlying pathology.

 

In the past, several universities and hospitals in Canada had brain banks where brains could be stored for research.  Unfortunately these have all closed due to lack of funding.  There are several brain banks for PD in the US, including one in Florida through the National Parkinson Foundation.

 

DBS surgery -- is the surgery being done asleep in Calgary or Edmonton?  Is it covered through health care or is it a cost to the patient?  Also, I am 48 years old and wondering about being put on Sinemet too early and wondering if this surgery is only available when the meds stop working or can a person get it earlier? I am concerned because I am so young and the quality of life ahead.

Deep brain stimulation (DBS) surgery is offered in both Edmonton and Calgary through the Movement Disorders Programs; for people living with Parkinson disease with advanced symptoms, who are experiencing fluctuations in benefit from their medications (wearing off of benefit between doses of medication and/or dyskinesia).  When surgery is being considered, a number of detailed assessments will be done by the Movement Disorders surgical team so the person and family understand the risks and benefits.

 

In Alberta, the cost of the surgery and the device is covered by Alberta Health and Alberta Health Services.  The surgery is done with the person awake and without their Parkinson medications as the surgeon relies on feedback from the person to identify the target in the brain for testing of benefit and/or side effects of stimulation.  Everything is done to keep the person comfortable through the day.

 

The surgery is not done on individuals with mild Parkinson's, as medications such as Sinemet work very well.  The medications never "stop" working; as the condition progresses, the medications become less effective and need to be adjusted appropriately, and surgery considered.

 


My father was diagnosed with PD just over a year ago at age 75.  His symptoms are slower speech, difficulty gathering thoughts, shuffling and difficulty holding his head up.  He is on prescription medication but I am not sure what they are.  Up to now I have been going off information given to me by those around him.  There seems to be a perception that if he were to concentrate more to raise his head while sitting and walking his head wouldn't droop as much.  Therefore people around him are constantly reminding him to lift his head, pick up his feet, etc.  I am sure this isn't the right approach.  Is there an exercise routine for his situation that might strengthen certain muscles that would help him out?  I haven't talked to his doctor so I am not sure what his doctor has recommended, if anything.  Any info would be appreciated.

Head forward posture is a common problem in Parkinson disease.  Neck strengthening and posture exercises are routinely recommended by physical therapists who treat PD.  For example, standing with your heels, back, shoulders, and head against a wall to provide proprioceptive input to the brain.  IF the head does not touch the wall, a small towel can be placed there.  Encourage the person to tuck their chin in and press the towel flat for 5 seconds.  The same can be done in a laying down position to "squish" the towel or a pillow.

 

There are also exercises which require the patient to lay on their stomach and lift the back of the head up against gravity toward the ceiling.  Arm and leg lifts can be added to this exercise to increase the level of difficulty and recruit other back extensor muscles into action.  It could be beneficial to be assessed by a physical therapist to determine which exercises would best address your Dad's issues.

 

If the head forward position is severe and persistent, even with exercises and postural awareness training, it could be a more complex issue with an underlying diagnosis of myopathy or dystonia, or both.  Treatment options could include medication changes, injections, or brain surgery and should be discussed with a movement disorders neurologist.

 


What is the importance of taking a CoQ10 supplement?

There has been a lot of interest in using coenzyme Q10, which is a naturopathic supplement, to slow progression of Parkinson disease.  It is safe and well tolerated, but quite expensive.  A large study was completed in North America using this substance with PD patients, and unfortunately was not found to be helpful.  At this time there is no evidence that use of coenzyme Q10 provides any benefit to people with PD.

 


I am a 54 year old female with PD for 7 years.  I have problems with my toes curling under with cramp like pain in one foot.  It is quite painful to continue walking.  Is this part of PD or something else?  What can I do to stop it??

This cramping of the toes is called an "off dystonia".  It is related to the PD and typically will affect the more severely affected side (the side that the PD started on).  This problem is due to the medication (usually levodopa) wearing off, or losing its effect.  Typically, the cramping will occur during the night, waking a person with PD up.  It can also occur during the day, just before the next dose of levodopa is due.  It should go away after you take the next dose of levodopa.  Adjusting the timing or dose of the levodopa is the best treatment for this problem.  The "off dystonia" should be discussed with your neurologist, so the medications can be adjusted appropriately.

 

If the cramping is very severe and the medications cannot be adjusted, botulinum toxin (botox) injections are sometimes used to relax the muscle, and help with the pain.

 


My question is about 'drug holiday' in relation to Parkinson drug management; can you help me understand what that is supposed to mean?

A 'drug holiday' is a term used to describe a procedure, where all drugs used to treat Parkinson's symptoms were stopped for several days to weeks.  This was done in individuals with severe PD who had a lot of flucuations, in the hope that when the drugs were restarted, they would work better.  The patients were usually admitted to hospital, and medications, such as levodopa and dopamine agonists, were stopped suddenly.  The patients usually developed severe slowness and stiffness, with problems such as inability to eat or walk.  This procedure carried a high rate of complications such as infection, dehydration, and even death.  With the development of the many drugs availablecurrently, and treatments such as surgery, drug holidays have not been used for over 20 years.  Currently, there is no placefor using a drug holiday in treatment of people with PD.

 

I have recently developed issues with 'freezing of speech'.  It happens only when I'm 'off' or right before and right after I take my meds.  At first it happened rarely, but now it happens frequently.  Sometimes it feels like a reminder that it's almost time for another dose.  I am trying to learn about  'freezing of speech' so that I can understand what is happening and also to know if there is anything I can do to prevent it.

In individuals with PD, in the early stages, the effect of levodopa (Sinemet and Prolopa) lasts for many hours, and the medication needs to be taken 3-4 times a day.  As the condition progresses, the benefit from each dose of levodpoa may last for only 2-3 hours, and motor-symptoms return before the next dose is due.  This is called "wearing off".  It may affect gait, speech, or cause general slowness and stiffness.  The best thing would be to discuss these symptoms with your treating neurologist to see how themedications can be adjusted to prevent wearing off.

 

I'm a 53 year old teacher recently diagnosed with Parkinson's.  I am presently not working and have been started on Prolopa.  Is it conceivable to believe that I might be able to return part-time to teaching?  (If the meds control my symptoms) I do not think I will have the ability to be full-time as I find it too stressful.  Also, should I be doing some sort of physiotherapy?

In individuals with early PD, medications containing levodopa, such as Prolopa or Sinemet usually work well, and result in good benefit throughout the day.  With proper adjustment, you should expect to regain normal or near-normal function.  Thus, it should be possible for you to return to work.  Whether it will be part-time or full-time will depend on how much benefit the medication provides, and should be discussed with your treating physician.  It is also important to note that it may take up to 3 months for the medication to take full effect.

 

Exercise is a very important  part of the treatment plan for individuals with PD.  We recommend regular exercise, at least 3 hours per week.  This can involve any type of exercise you enjoy - dancing, walking, yoga, aerobics, exercise classes, etc.  If you are otherwise healthy, and have no problems with gait or balance it may not be necessary to see a physiotherapist in the early stages of PD.

 

Most of the PWP that I associate with take Sinemet (levodopa/carbidopa).  I take Prolopa (levodopa/Denserazide).  I had originally started with the Sinemet but very early on was switched to Prolopa which has caused less difficulties with nausea.  I'm wondering about the differences between the two drugs.  Is one better than the other?  What other reasons would prompt the use of one drug over the other?

Levodopa is the most effective treatment for PD as it is made into dopamine in the brain, which is the chemical that is decreased in PD.  When taken by mouth however, levodopa is converted into dopamine in the body, beofre it gets to the brain.  Dopamine cannot get into the brain as it is blocked by the "blood-brain" barrier.  That is the reason that levodopa is always given in combination with carbidopa, or benserazide, both of which block the enzyme in the body that converts levodopa to dopamine.

 

Most people do well on inemet, but in the case of nausea (a common side effect of levodopa), a change to Prolopa is recommended, as benserazide is a more powerful enzyme blocker than carbidopa.  The reason neurologists tend to use Sinemet rather than Prolopa is sometimes habit, and other times because it is a pill that can be split into half for better titration (Prolopa is a capsule, so different strengths need to be prescribed).

 

How can I alleviate dry mouth for my husband who has great difficulty with swallowing?  He has Parkinson disease.

Dry mouth is an unusual complaint to have with PD, and typically drooling is much more common. The most common cause of dry mouth is medication related. For example medications used to treat depression (such as amitryptaline), cognitive problems (such as donepezil) or bladder urgency or frequency (such as Detrol or Ditropan) can cause dry mouth.  The first step is to review the medications with your physician, and substituting different meds without this side effect if possible. If medication use has been ruled out, another possibility is a condition called Sjogrens syndrome which results in the salivary glands producing less saliva.  Finally, if swallowing is impacted, assessment by a speech pathologist is important.

 

Can my husband continue to drive? He is at the early stage of PD.  Does he need to report his illness to his insurance and the Motor Vehicles bureau? Can we get an assessment test for his driving abilities at this time and over time?

As operating a motor vehicle is such an important part of life in Alberta, a frequently asked question from a person with PD (PWP), and family, is whether he/she is still safe driving. We will only address  Class 5 driving licenses as Classes 1-4 have stricter requirements.  It should be remembered that driving is a privilege, not a right.

 

In early stages of PD, there generally is no cause for concern.  However, according to the Department of Motor Vehicles, this medical problem should be reported to them.  With progression and the development of fluctuations, difficulties with driving may emerge.  This should be addressed with your physician, who may ask such things as does the family have concerns, or has the PWP had any recent accidents. Testing of memory and cognitive function may be administered, such as the Montreal Cognitive Assessment (MoCA), or Mini Mental State Exam (MMSE).  Finally if the answer is unclear an assessment by Driveable, or other similar agency, may be recommended.

 

In situations where the PWP has unpredictable fluctuations, and /or has developed cognitive problems or dementia, driving has to be given up. If the person in this situation does not want to give up driving, then he/she must be reported to the Department of Motor Vehicles and their license will be reviewed. This reporting can be done either by the physician, or concerned family members.


If you have any questions, please contact:


Driver Fitness and Monitoring Branch

Main Floor, Twin Atria Building

4999 - 98 Avenue

Edmonton, Alberta, Canada T6B 2X3

Tel (780) 427-8230

Fax (780) 422-6612

e-mail: driver.fitness@gov.ab.ca

or visit the Alberta Transportation and/or Saferoads web sites at www.trans.gov.ab.ca or www.saferoads.com.

 

What kind of exercise is possible and beneficial for a 77-year-old female suffering from Parkinson disease, asthma and osteoporosis?

In the case of a person with Parkinson's who also has other comorbid conditions, the best answer is to have an individualized assessment with a physical therapist to determine which types of exercises may work best for this patient. Some classes or programs that take a one-size-fits-all approach may not be suitable for this particular patient. Please check with the physical therapist to see if they have specific knowledge and experience with their conditions.
 

My husband was diagnosed with PD 4 yrs ago. His balance is a real issue. He is on Sinemet 3x a day. I wondered if there is something to help his balance.

Balance impairment is a common problem for people with Parkinson's disease which can lead to frequent falls. Balance relies on many body systems to interact smoothly to keep us upright (example: muscles, brain, nerves, inner ear), therefore, it is important to stay generally fit and as active as possible.
 
Specifically, studies have shown that activities such as Tai chi and dancing can improve the balance of patients with mild to moderate PD. An assessment and individualized treatment plan with a Physical Therapist may also be helpful in specifying which areas of balance are in need of improvement along with specific exercises that can be done at home that may be beneficial. Fall prevention education is also key to staying mobile and safe. Using a cane, hiking poles, or a walker may also be helpful during certain activities to prevent falls.
 

The National Post recently had a story about using non-invasive technique of applying focused ultrasound “blasts” at malfunctioning cells. The results seem to be very encouraging – any further information on this? Is this treatment being considered in Alberta? Probably too early to tell, but how long might this help for? Would it replace DBS?

This story refers to a type of non-invasive treatment for essential tremor, and is being done on a research basis in Toronto. It is currently not available for Parkinson disease.
 

My father was recently diagnosed with Parkinson disease through an office visit with a neurologist. He lives in Cranbrook, BC and I would like to get him started with a physician that specializes in Parkinson and the most recent trends and treatments. Do you have anyone in Calgary that I could refer him to get an appointment with and start care with? Is a CT scan recommended?

Your father can be referred by his family physician to the Movement Disorders Clinic in Calgary for confirmation of the diagnosis and ongoing care. A CT scan or MRI of the brain is usually done when a person is first diagnosed with PD to rule out tumors, strokes, and infection. The diagnosis of PD is done by clinical evaluation, and ruling out any conditions that may result in similar symptoms.
 

My mother-in-law has Parkinson. She has been on meds for sometime. A few years ago, they found a blood clot in her leg and started treating her with Warfarin. Recently, it has been found that she has a blood clot in her lung. After years of using warfarin her bones are very brittle, and she now has difficulty in breathing as her bones are slowly collapsing. Does the Warfarin have any negative side effects with the Parkinson meds?

As far as we are aware, there is no interaction between warfarin and PD meds. And none of the PD meds should result in bone loss. However, people with PD tend to be less active, and are at higher risk for developing osteoporosis. Regular exercise and supplementation with vitamin D and calcium are important to prevent this.
 

I’ve had PD for about 8 yrs. With it came a rare happening called CAMPTOCORMIA. It makes you bend over like the Hunchback of Notre Dame. It does not happen when one sleeps or sits down, only when I walk. Some doctors say it is caused by the stomach muscles pulling one forward in a bent over position. No one seems to have knowledge about any treatments to make the camptocormia not as bent and rigid that it is. Have you heard of this and do you have any avenues of treatment or suggestions? Right now this is worse at this time than the PD.

The term camptocormia can be loosely translated into the term “bent-trunk”. It refers to severely stooped or bent posture and not to a specific underlying disorder. Its basis is likely different depending on the cause; for instance, it can be related to disorders that can cause weakness (such as disorders of muscle, the neuromuscular junction or motor nerves or neurons). If weakness is greater in the para-spinal and back muscles this can lead to imbalanced forces acting on the spine and a bent position. Structural changes in the bones of the spine (for example fractures leading to compression) can also lead to a bent position. These mechanisms are in contrast to an active contraction of muscles, such as seen in dystonias, disorders that lead to active muscle contractions. Camptocomia is often associated with diseases that cause parkinsonism (Parkinson’s disease and multi-system atrophy among others) and can occur in up to 10% of patients with Parkinson’s disease. Treatment approaches would differ depending on the cause. Camptocormia should be evaluated by a neurologist, or other experienced clinician, who can coordinate an evaluation aimed at identifying the likely mechanism. In people with parkinsonism, especially those with Parkinson’s disease, modification of dopaminergic medications can be tried. In camptocormia due to dystonia, botulinum toxin injections might be helpful. The role of physiotherapy is unclear.
 

My dad was diagnosed with PD early 2011. He is 56 years old. He was put on Sinemet 3 times a day. He has lost most of his movement on the right side, with stiffness. He is losing weight constantly and has lost complete confidence as communication has become challenging too. He has constant anxiety attacks and no desire to do anything. What treatments would you suggest?

Parkinson disease is a multi-system disease, meaning that it affects multiple areas of the nervous system. In addition to motor slowness, stiffness and gait problems, it can cause psychiatric symptoms (such as anxiety and depression), fatigue, apathy, and autonomic dysfunction (constipation, bladder problems, and low blood pressure). Treatment involves use of drugs like Sinemet, which will help the motor symptoms. Dose needs to be gradually increased until benefit is seen. There is also treatment for the other symptoms. For example, anxiety will respond to anti-depressants, low blood pressure can be treated with increased fluid and salt intake, etc. The physician needs to ask about all the symptoms of PD to develop the best treatment plan. Involvement of a multidisciplinary team such as physiotherapy, speech therapy, dietary, psychiatry, and other specialists is also important. This type of comprehensive care is available through the Movement Disorders Clinics in Edmonton and Calgary. Parkinson Alberta, as well as other societies can provide information and resources on all aspects of the condition.
 

What is the evidence that GM1 ganglioside is a promising treatment for PD?

GM1 is a fatty substance that is normally found in many cells in the brain. It is thought to help cells interact with each other, and stabilize the cell membranes. GM1 has been shown by some researchers to be present in a lower than normal concentrations in the brain in PD. If this turns out to be correct, we may be able to reverse the symptoms of PD by giving it to affected individuals. However, much research still needs to be done in this area. First, this hypothesis needs to be proven. Secondly, we do not know how much GM1 is needed, or how to administer it. The other issue is that GM1 was available in Europe for treatment of some neurological problems (other than PD) and was taken off the market because of side effects. Thus we need to know that it is safe, not only effective. In summary, this is a potential treatment in PD but still in the early stages of research.
 

I just finished radiation treatment for cancer and have found that my Parkinson symptoms are worse. Is this 'normal'? Should I be concerned about this, and what should my next step be?

Although we do not have enough information to comment specifically on why your PD may be worse after radiation treatment, there are several general observations we can make. First, any type of stress or illness can result in a transient worsening of symptoms. 
 
If you are hospitalized, there are a number of other reasons that may contribute to this :
  1. missing PD medications (due to going for tests or therapy) or getting them at the wrong times
  2. being prescribed the wrong doses of PD medications
  3. being prescribed medications that interfere with the activity of the PD medications, or can make the PD worse. A good example of this is metoclopramide (or Maxeran) which is commonly used to control nausea. Anyone with PD should not take Maxeran, as it will make PD symptoms worse. Alternative medications for nausea that should be used are domperidone or ondansetron.
 
When you are admitted to hospital, it is important to take an accurate record of all the medications you are on and when to take them. The Movement Disorder Clinics in Edmonton and Calgary have special information sheets that you can carry with you outlining your meds, what medications should be avoided, and information about PD. Parkinson Alberta Society, Parkinson Society of Canada, and the National Parkinson Foundation (US) all have information packages to help with this as well.
 

Is the root cause of Parkinson disease mainly environmental or genetic? What is the consensus of the panel? What does the most recent literature suggest?

In spite of Parkinson disease (PD) being described over 150 years ago, we still do not know the cause. However, some clues are emerging. First, in about 10% of affected individuals, there is a clear genetic cause, and these genes are being identified. In the other 90%, it is thought that a combination of genetic and environmental factors combine to cause PD. 
 
Second, the biggest risk factor is aging. 1 in 100 individuals over the age of 55 will get PD. Some environmental factors are associated with an increased risk (such as growing up in a rural environment, working with manganese, pesticide exposure, and drinking well water). What specifically about these factors that may increase the risk is unknown, and further research is needed to clarify this. Protective factors (associated with decreased risk) are drinking coffee and smoking. The biggest protective factor appears to be exercise. There has recently been a lot of research done showing that people who exercise regularly are at lower risk for getting PD, and regular exercise may slow down the progression of PD.
 

I am developing a program for a client with PD and see that music and dance is offered through PAS. What is the evidence that music and dance are beneficial to people with Parkinson’s (PWP)?

There is a growing interest in the benefit of dancing and music for PD symptoms although research is limited. The Dance for PD website has a sample of recent research articles which do demonstrate improvement in rigidity, hand movements, quality of life, and balance in subjects who participated in regular PD dance classes. Several questions remain unanswered. For example: what is the optimal frequency of participation? Dance classes have ranged from 60 - 90 minute sessions for 6-10 week periods, with questions regarding fatigue level of subjects afterward.
 
Additionally, there are no studies which compare other forms of exercise / movement that have also been shown to be beneficial for PWP, for example: Is dance superior to Tai Chi, Yoga, Pilates, treadmill, pole walking, or other traditional exercise programs? It has been suggested that the social component of the dance class may be a contributing factor to success, therefore, it unknown whether a patient practicing dance movements on their own at home would demonstrate the same benefits.
 
What can be concluded is that many forms of movement and exercise are beneficial to PWP. A key component to designing any program for a client is to consider their individual interests and perceived benefit level, as these factors are key to long term compliance. When designing a program for PWP it is very important for the practitioner to have a solid understanding of PD, the various stages and progression over time, medication management, and fall/safety issues which challenge this population.
 

I have PD and have been told by my neurologist to consider DBS. What is the process, and screening tests? How long is the wait list?

There are certain criteria which must be met before a person is considered for surgery. Through the workup for surgery you will see most or all of the surgical team, including the Movement Disorders neurologist who specializes in deep brain stimulation, the neurosurgeon, nursing, a neuropsychologist, and if required, psychiatry and other allied health such as social work, physical therapist, etc. Before surgery is considered, every attempt needs to be made to improve your condition with the use of medications. To ensure this has been done, an assessment with a Movement Disorder neurologist is the first step in the process. At this appointment risks and benefits will also be reviewed. If you have not previously had an MRI of your brain, you will need one, as well as detailed neuropsychological testing. If you are experiencing mental health concerns such as anxiety or depression a referral to a psychiatrist will be made. You will also have an “Off/On” assessment where you are assessed without the benefit of medication and then again after you have taken your medication to determine the degree of benefit and side effects provided by the medications. These assessments usually take about six months to complete before surgery can occur.
 

My wife has recently been diagnosed with PSP by a neurologist. What are the symptoms? Is it worthwhile getting a second opinion?

Progressive Supranuclear Palsy (PSP) is a Parkinson’s plus syndrome.
 
This condition usually presents with difficulty with gait and balance leading to falls which are usually backwards but not always. As the disease progresses visual problems arise leading to patients complaining of blurred vision, and double vision when reading. This is due to the fact that the part of the brain which controls voluntary eye movements is affected so that patients have difficulties voluntarily looking down. However if they tilt their head backwards the eyes do move down due to reflex action. As the disease progresses alteration in mood and behavior including depression and apathy may occur. In latter stages mild dementia may supervene. Initially these patients superficially resemble those individuals with Parkinson’s disease however they typically do not respond to dopamine replacement therapy (levodopa, pramipexole or ropinirole) and falls are an early hall mark of this disease while in Parkinson falls occur later in the course of the illness. Until the typical eye findings occur it is difficult to make an accurate diagnosis.
 
I would only recommend a second opinion if your wife has not been seen by a neurologist with special expertise in Movement Disorders or her symptoms do not fit the classical presentation of this condition.
 
 
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