Information on Parkinson's

PAParkinson Society Canada

Socidtd Parkinson Canada

[/Altr]IIThis document has been prepared to help you become moreinformed about Parkinson's. lt is designed to answer questionsabout Parkinson's and how it might progress. lncluded are somesuggestions on how to prepare for the Parkinson's journey.

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PROGRESSIONOF PARKINSON'S

DISEASE

What is Parkinson's?Parkinson's is a disorder of the brain. Movement is controlled by dopamine, a chemical thatcarries signals between nerves in the brain. When cells that produce dopamine die or aredamaged, Parkinson's symptoms appear. Parkinson's is a complex condition.

What are the symptoms of Parkinson's?The loss of dopamine can cause a variety of motor (movement) symptoms, including:

. Tremor (shaking)

. Muscle stiffness (rigidity)

. Slowness of movement

.lmpaired balance

Other symptoms may also occur:. Small handwriting. Soft speech. Stooped posture. Reduced facial expression. Shuffling when walking. Muscle pain

ln addition to the motor symptoms, you might notice non-motor symptoms, including:. Constipation. Sleep disturbance. Bladder urgency and frequency. Dizziness on standing. Fatigue. Depression: feeling sad, having less energy or losing interest in activities. Memory problems

lndividuals with advanced Parkinson's may experience other symptoms that are due to acombination of the disease process and medications used to treat Parkinson's. The most commonsymptoms are hallucinations (seeing things that are not really there, including animals or people).Very occasionally, some people experience delusions (having thoughts that are not real).

lf you experience symptoms associated with Parkinson's, take action and contact your doctor.Early assessment and diagnosis can help you manage Parkinson's or identify other conditionsthat may be causing the symptoms.

Progression of Parkinson's Disease | 1

ls Parkinson's the same for everyone?No. Each person with Parkinson's is unique and each person may experience differentsymptoms. However, since Parkinson's is a progressive condition, symptoms will worsen overtime and new ones may appear. lt is difficult to estimate how quickly or slowly Parkinson'swill progress in each person. lt may progress more quickly in people who are older when thesymptoms first begin. Parkinson's may progress less quickly when the main symptom is tremor,especially when it starts on one side.

How is Parkinson's treated?Currently, there is no cure for Parkinson's. However, many of the motor symptoms can betreated with medications. Medications used to treat the symptoms either replace the lostdopamine or mimic the action of dopamine in the brain. Medications can alleviate the symptoms,but do not slow the progression of Parkinson's. As the symptoms change, medications will needto be adjusted.

Non-motor symptoms may be treated by other types of medications. Parkinson's can bechallenging to manage because some treatments for non-motor symptoms can worsen themotor symptoms. lt is important to discuss treatment options with your neurologist.

Some people with Parkinson's may benefit from brain surgery (often known as deep brainstimulation or DBS). Surgical treatment for Parkinson's can be beneficial for some people.Surgery is not a standard treatment for everyone; but can be considered after drug therapy hasbeen tried. Procedures involve inserting a probe into the brain and targeting specific areas thatmay control tremor or involuntary movements. Talk with your neurologist to determine whetheryou might be a candidate for surgery. A comprehensive assessment will need to be done beforea decision is made.

Physiotherapy and exercise can improve one's flexibility, reduce stiffness and alleviate stress.

How will I know when Parkinson's has progressed?

Although everyone is different, there are signs that Parkinson's is progressing. You may findthat it takes longer or more effort to perform daily activities such as getting dressed. Tremor onone side of your body may now appear on both sides. You may notice significant changes inthe way you walk, from slowness to a shuffle. Symptoms may be worse one day and not thenext. You may notice that you need to take your medications more frequently. Higher doses or acombination of medications may be necessary to control symptoms.

It is important to be aware of changes and tell your doctor when you notice them. Ask your carepartner or family if they have noticed changes, such as difficulty hearing you talk. lnvolve healthcare professionals, such as speech pathologists or home care workers to help you manage thedaily challenges of Parkinson's.

2 | Progression of Parkinson's Disease

How long will I live with Parkinson's?Depending upon your age of onset, how you manage the symptoms, and your general health,you can live an active life with Parkinson's. ln most cases, one's life is not shortened. However,as you age and as the disease progresses, there will be increased risks. For example, impairedbalance can lead to falls; swallowing problems, if not managed, can lead to pneumonia.Parkinson's is known as a chronic (long term) condition that will require ongoing monitoring andmanagement to maintain one's quality of life.

What about other health conditions?Parkinson's will not exclude you from the possibility of developing other health concerns.Distinguishing between normal aging, Parkinson's symptoms and those of another conditioncan be challenging. For example, memory or concentration changes can be a side effect ofmedications, a non-motor symptom of Parkinson's or a separate condition. Ensure you areworking with health care professionals who are knowledgeable about Parkinson's, especiallywith the need to follow your medication routine. lt is important to maintain a healthy lifestyle(e.9., good nutrition, exercise, staying active and socially engaged).

What approach can I take?Learn as much as you can about Parkinson's. Your local Parkinson Society has many resourcesto help you manage the condition.

Reducing stress in your life will make a difference. Join a Parkinson support group. Somepeople find yoga and tai chi helpful. Humour can also be a great stress reducer. Staying asactive as possible and maintaining a positive attitude is important. Many people find that acreative activity such as painting, singing, playing an instrument, dancing or writing poetry helps.Even if Parkinson's affects your balance, you can still have a balanced life!

What do I need to know to plan my life?Take stock of your life and communicate with those who are close to you (care partner, family,friends).

Work options. Discuss options with your employer, such as adaptive technology or reducedwork load. lf it becomes necessary, find out if retiring early is an option. Many people whoreduce their workloads find they are able to focus on managing their Parkinson's (i.e., more timeto keep physically fit).

Finances. Will your benefiVmedical plan cover drugs and other expenses, such as speechtherapy? Do you have a retirement and/or pension plan? Do you qualify for disability insuranceor the disability tax credit? Contact disability professionals before reducing your work hours, todetermine if this will affect the amount of eligible funding.

Legal and health planning issues. Discuss power of attorney and advance care planningwith your family now. Discuss what quality of life means for you. By talking about these issuesnow, you can impact your care in the future. (*lnformation on advance care planning varies fromprovince to province. Contact your local Parkinson Society for appropriate resources.)

Progression of Parkinson's Disease | 3

Care issues. Seek the care of a neurologist or movement disorder specialist. Together you candevelop a care plan that will meet your needs. Monitor your symptoms and communicate anychanges so adjustments to medications can be made.

Personal choices. As Parkinson's progresses, you will be faced with making choices aboutyour life. Symptoms and medications can affect your ability to drive safely. Knowing this mayhappen and planning for it can make the decision easier. You may choose to stop driving.

What do care partners need to know?lf you are a care partner or family member, Parkinson's will affect your life, too. Learn as muchas you can. Care partners often believe they will remain healthy and always be able to providecare. However, care partners often burn out and become ill.

Take care of yourself: Continue to enjoy your own interests; take time to relax; maintain ahealthy lifestyle including exercise and good nutrition; and consider using services, such ashome care. Have an "emergency plan" in case you become ill. Build a network of support.Contact your local Parkinson Society for information about Parkinson's and referral to a supportgroup.

How do I begin the Parkinson's Journey?The Parkinson's journey will be different for everyone. To help you stay the course, think aboutwhat is important to you. Some things to consider may include:

. How you will manage your Parkinson's symptoms

. How you will minimize side effects of medications

. How you will maintain your emotional well-being

. How to ensure you continue your work or hobbies

. How you will maintain relationships with family and friends

. How you will maintain your independence

Whatever you choose, maintaining your quality of life on a daily basis is important.

Where can lfind information?Contact your regional Parkinson Society or visit www.parkinson.ca.

References:AAN Guideline Summary for Patients and their families: Diagnosis, prognosis, and treatments fornewly diagnosed Parkinson Disease.AAN Guideline Summary for Patients and their families: Screening and treatment for depression,dementia, and psychosis with Parkinson disease.

The contents of this document are provided for information purposes only, and do not represent advice, anendorsement or a recommendation, with respect to any product, service or enterprise, and/or the claims andproperties thereof, by Parkinson Society Canada.

@ Parkinson Society Canada 2009

4 | Progression of Parkinson's Disease

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Soci6t6 Parkinson Canada II

1O steps to help you cope with a recentdiagnosis of Parkinsonts

You've just received a diagnosis of Parkinson's. You leave your doctor's office with questions,and you wonder what comes next.

The first step is to start thinking about a plan to get information and support to help makeinformed decisions about your future. Here are 10 steps to consider.

1. Get information from reputable sources.All of the information out there can be ovenrvhelming. What can you believe? To learn whatresources are available in your community, start with Parkinson Society Canada. The ParkinsonSociety has a variety of resources that can help you understand the disease and how to livefrom day-to-day. Call our national toll-free lnformation and Referral Centre at 1-800-565-3000 orvisit the web site at urunv.parkinson.ca and link to the Parkinson Society in your community.

2. Start talking about the diagnosis.When you're ready, discuss your diagnosis and share information with your family and, as timepasses, with good friends. Recognize that you may feel a variety of emotions: anger, denial,frustration, fear, confusion, disbelief and sadness. Proceed at your own pace. Stay connectedwith those close to you. Support each other, and ask for help when you need it.

3. Greate a resource file.Use a binder, folder or file box. Keep it in a convenient location (e.9., near the phone) andfill it with pertinent information such as dates, locations and phone numbers for medicalappointments. Some people keep a daily journal listing symptoms and responses to medicationswith time of day or night.

lnclude articles about Parkinson's, research findings and other reference material you wantto discuss with your health care providers. lnclude a list of your medications (prescription,over-the-counter, vitamins and supplements). Use Parkinson Society's "l have Parkinson'sMedication Card", a wallet-size card available at www.parkinson.ca.

4. Get the most from your doctor's visits.Make full use of your time at medical appointments. Write down your questions beforehand. Askthe doctor to clarify what he/she is saying in simple terms. Keep in mind that you have the rightto question the treatment you're receiving, if new medications that you've heard about couldhelp you, whether you should consider alternative therapies, or pursue a second opinion. Askhow to access your doctor's nurse or assistant between visits to answer your questions or easeyour concerns.

Taking Control: 10 Steps | 1

5. Look for help and support.Contact Parkinson Society Canada to find out what's available in your community. Considerjoining a support group. You'll get practical advice on how to manage Parkinson's. A supportgroup offers a safe place to talk with others who understand. Some groups provide specific helpfor a particular aspect of Parkinson's (e.9., newly-diagnosed or young onset). Groups for carepartners are also available. Many people find support on the internet.

6. Plan for the future.Now is the time to develop plans for the future. Avoid putting off important decisions, especiallylegal and estate planning. Talk to your family about your concerns. lf you're working, get a goodunderstanding of how Parkinson's may affect your ability to perform the specific tasks of yourjob, now and in the future. Find out what benefits are available to you.

7. Maintain an active social life.Stay connected to family and friends so you don't become isolated. Keep in touch by phone,visits or e-mail. lf you feel depressed or anxious, talk to your doctor. Continue doing the thingsyou enjoy or find a new hobby. Think about volunteering. Parkinson Society Canada has manyopportunities, including SuperWalk for Parkinson's: a fun way to connect with caring people inyour community.

8. Pace yourself.Your Parkinson's will be unique to you, so learn how to pace yourself. Many people becometired. lt can be caused by the condition itself, sleep disturbances or medication side effects. Planactivities carefully, and give yourself time to complete them. Balance activity with rest periods. lffatigue becomes a serious concern, talk to your doctor.

9. Eat well.Eating a well-balanced, healthy diet can benefit anyone, but for people with Parkinson's it takeson added importance. Your diet should include a variety of foods from all four food groups:grain products, vegetables and fruit, milk products, and meats and alternatives. Recognize thatParkinson's may present some eating-related challenges, and some dietary modification may beneeded. Talk to your doctor, or consider asking for a referral to a registered dietitian.

10. Stay active and exercise regularly.A good exercise plan can help your body cope better with Parkinson's. Regular exercise canhelp maintain flexibility and good posture, keep muscles strong and joints supple, and improvecirculation to the heart and lungs. lt can also help you to deal with day{o-day stress and giveyou a sense of achievement and control over your condition. Exercise could be as easy asfinding a simple activity that you enjoy, such as walking, gardening or swimming and making itpart of your daily routine.

Source: "The Best of' Parkinson Post, Summer 2006, Volume 6, lssue 2.Canada's Food Guide to Healthy Eating, www.hc-sc.gc.ca/fn-an/food-guide-alimentlindex_e.html

The contents of this document are provided for information purposes only, and do not represent advice, anendorsement or a recommendation, with respect to any product, service or enterprise, and/or the claims andproperties thereof, by Parkinson Society Canada.

2 | Taking Control: '10 Steps


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Socidtd Parkinson Canada

This information sheet will help you understand what types of medication are available to treat your Parkinson'ssymptoms, the potential side effects, and the importance of working closely with your health care professional.

. Medication will help youfunction, but may causeside effects.

. lt is important to find theright balance between themedication's benefits andside effects.

. Drugs for Parkinson's workon the brain's complexchemistry and may needto be taken several timesa day.

. Use them as prescribedand do not alter yourdoses without consultingyour doctor.

Contact your regionalParkinson Society throug hwwwparkinson.ca for moreinformation and support.

The contents of thisdocument are provided

for information purposesonly, and do not represent

advice, an endorsement or arecommendation, with respect

to any product, service orenterprise, and/or the claims

and properties thereof, byParkinson Society Canada.


Do I have to treat my Parkinson's?

The purpose of treating Parkinson's is to reduce the effect of symptoms onyour daily life. Without treatment, you will eventually find that the symptomsmake it hard to perform daily activities. Symptoms, such as shaking andstiffness, may cause discomfort; the risk of injury from falls may increase,and swallowing may become more difficult.

Everyone with Parkinson's is unique and will experience different symptoms,which means the treatment you receive will be geared to your specificneeds. Current treatment neither cures Parkinson's nor stops it fromadvancing. (See PSC lnformation Sheet on Progression of Parkinson's.)

When should I start taking medication?

lf you have been diagnosed with Parkinson's, you may be wondering whenyou should start treatment and with what medication. There is no singlestrategy that applies to everyone.

The timing will differ from person to person. lt depends on a variety offactors, such as:. your age. the nature of your symptom(s). your lifestyle (e.9., if you are working or retired and the kind of leisure

activities you enjoy). your overall physical health. whether you experience balance problems with walking. changes in intellectual abilities, and. your own attitude toward taking medication

When to start taking medication can be decided in consultation with yourneurologist or movement disorder specialist. The decision to delay takingmedication requires close monitoring and evaluation for risks of falls andinjuries, especially if you are older. The older you are, the more you are atrisk for a fall, and Parkinson's medication, when used appropriately, mayreduce this risk.

What about medications for other health conditions?

The effectiveness of some Parkinson's drugs can be reduced whencombined with drugs for other health conditions. lt is important to seekadvice from your doctor or pharmacist regarding any new drug prescription.

Parkinson's Medications | 1

What medications are used to treat Parkinson's symptoms?Since many of the motor symptoms of Parkinson's are the result of a lack of dopamine in the brain, most drugsused to treat Parkinson's are aimed at temporarily replenishing or imitating dopamine. The following list is a guideto medications approved by Health Canada to treat symptoms of Parkinson's1. Speak to your doctor for detailedinformation regarding effectiveness and side effects of a particular drug.

TERMINOLOGY

Dyskinesias: Dyskinesias areinvolunlary, purposeless move-ments of any body part. They maybe mild (slight ankle twisting) orsevere (uncontrollable writhingmovements). Dyskinesias are usu-ally felt during the time you are onwhen you have taken your medi-cation;this is also called "peakdose dyskinesias".

On-Off Symptoms: When medi-cations such as levodopa relievesymptoms, you are in your "on"state. This means you can doyour daily activities. When themedication does not work and thesymptoms return, you are in your"off'state. This means you maynot be able to do the things youwant or need to do. lf your symp-toms return before your next doseof medication, it means you are ina "wearing off'state.

SURGERY AND PARKINSON'SMEDIGATIONS

lf you are going to have surgery,especially requiring a generalanaesthetic, talk to your surgeon/anaesthesist ahead of time.He/she may want to discussanaesthesia, pain relief and yourdrug treatment with your doctor/neurologist. Certain pain reliefdrugs can interact with Parkinson'smedications.

Levodopa (levodopa/benserazide [Prolopa@], Ievodopa/carhidopafSineme@ Sinemet@CR/). Converted into dopamine in the brain and stored in nerve cells to replace

depleted dopamine. Combined with another drug, carbidopa orbenzerazide, allows more levodopa

to get to the brain and reduces side effects. Helps improve muscle rigidity and movement. Side effects include dyskinesias* (involuntary movements). over years of use, may be associated with "wearing off'*

-see terminologv

Dopam i ne Agonrbfs (brom ocri pti ne [Parlodel@, pram i pexole [M irapet<@],ropinirole [ReQuip@]). "Mimics" or imitates action of dopamine. Can be used as initial treatment or with levodopa in advanced stages. Side effects include sleepiness, hallucinations, leg swelling and obsessions

with food, sex and activities such as shopping, gambling and lnternet use

Am a ntad i n e (Sy m m etrel@). Enhances dopamine release and blocks glutamate, a brain transmitter. Used to treat early symptoms. Can reduce dyskinesias and improve wearing off

COMT Inhibitors (entacapone [Comkn@]). Block a key enzyme responsible for breaking down levodopa before itreaches the brain

. Can improve duration of response to levodopa

. Side effects include dyskinesias

Levod opalca rb i d o pa/entaca po n e (Sta I evo@). Substitutes individually administered immediate-release levodopa/carbidopa

+ entacapone. Used to replace immediate-release levodopa/carbidopa (without entacapone)

when patients experience end-of-dose wearing off

Levodopa/carbidopa intestinal gel (Du odoparu). Levodopa/carbidopa gel administered throughout the day with a pump via atube directly into the small intestine

. Used in advanced Parkinson's disease

. Approved under the Notice of Compliance with Conditions (NOC/c) policy2

Monoamin*Oxidase-B lnhibitors (MAO-B) (selegiline [Eldepryal@],ras ag i I i ne [Azi lect@]). Enhance effect of dopamine by preventing its breakdown. Side effects include dyskinesias

Antichol i nergic Dru gs (Apo@tri hex, benztropi ne [Cogenti n@],tri h eryp he n i dyl [Arta n@]). Conects imbalance between dopamine and acetylcholine

2 | Parkinson's Medications

How can I get the most benefit from my Parkinson's medications?

. The timing of medications is an important way to control yoursymptoms. Follow the guidelines provided by your health careprofessional.

. Use a timer to remind you to take your medication on time to avoid"double-dosing".

. Take each dose with a full glass of water to aid absorption.

. Do not break, crush or chew controlled-release tablets, unlessinstructed by your doctor.

. For nausea, take the drug after meals or with a cracker or fruit.

. Keep an accurate list of all medications, including over-the-counterproducts, herbal remedies, vitamins or supplements. To get a copy ofParkinson Society Canada's Medication Card, visit: www. parkinson.ca.

What are the side effects of Parkinson's drugs?

The most common reactions (which occur within the first several days of anew treatment) include nausea, vomiting, dizziness (drop in blood pressure),sleepiness and visual hallucinations.

ln the last few years, levodopa and dopamine agonists in particular(ropinirole [ReQuip], pramipexole [Mirapex]) have been associated with theemergence of behavioral changes such as impulse control disorders. Theseare characterized by failure to resist an impulse to perform certain actions.

lmpulse control disorders include a range of behaviors such as compulsivegambling (up to 5% of treated patients) or shopping, hypersexuality, bingeeating, addiction to the lnternet or to other recreational activities. Theseactivities are often pleasant in the moment, but over time may becomeharmful to you or to others. lf you are experiencing these behaviours, tellyour neurologisUdoctor. Often the medication can be adjusted which canreduce or control the behaviour.

Gare partners can play an important role in helping to identify when thesebehaviours occur. lf you are a care partner, tell the person if you havenoticed a change in his/her behaviour or personality and encourage him/herto speak with the doctor immediately so medication can be adjusted.

What are non-motor symptoms?

People with Parkinson's often experience non-motor symptoms which canbe more bothersome than motor-symptoms. Some examples of non-motorsymptoms include constipation, depression or anxiety, sleep disorders andcognitive changes. Adjusting the Parkinson's medications can often controlthese symptoms. lf this approach doesn't work, specific treatment may berequired. For example, depression is common in Parkinson's and usuallyresponds well to treatment. Medications to improve cognitive function arealso available.

WHAT QUESTIONS MIGHTIASKABOUT TREATING

PARKINSON'S?

You might find it helpful to writedown any questions you havebefore your next appointment.This can help your visit bemore efficient. Here are a fewquestions you may wish to ask:

1. What are the benefits ofeach kind of medication?

2. What are the side effectsand how can I managethem?

3. When do I take themedication relative to mealtime to get the best result?

4. How soon can I expectthetreatment to start working?

5. How will treatment affectmy daily activities?

6. How often do I need tofollow up with my doctorabout my medications?

7. Do drugs lose theireffectiveness over time if I

start treatment early on?

8. Should I be concernedabout behaviours relatedto taking drugs, such asconfusion or compulsiveactivities (e.9., shopping orgambling)?

9. Are my medicationscovered by the provincialdrug plan?

10. Would a clinicaltrial beappropriate for me? Canyou help me find one?

Parkinson's Medications | 3

How will my Parkinson's change over time?

Parkinson's will change over time. Often the changes arechecklist may help you identify these changes. Completewith your doctor.

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notice them. The following12 months. Discuss the changes

Are you tired most of the day?

Do you have numbness, tingling or aching?

Are you often constipated?

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Have you or your care partner noticed changes in your thinking, e.9., solving problems orremembering things?

Have people mentioned they have difficulty understanding you when you speak?

Do you have problems swallowing or choking on your food?

Have you suddenly "dosed off'while engaged in an activity(e.9., eating a meal or having a conversation)?

Has your handwriting changed in the last 6 months?

Have you fallen down in the last 6 months? lf so, how many times?

Do you "freeze" (stop suddenly)when walking?

Have you or your care partner noticed changes in your ability to drive the car?

Has your partner noticed you are having violent dreams?

Do you feel sad for several days at a time?

Are you experiencing changes with sexual function (e.9., no interesUperformance/or "hyper" interest)?

Do your medications take a longer time before they start working?

Have you noticed your medications work for a shorter period of time?

Do you have urinary problems?

Do you feel light-headed or dizzy when you get up from a chair or bed?

Have you or your care partner noticed that you are shopping more often or have a keen desire to buylottery tickets?

Have you noticed a change in your sense of smell?

Sourceslnfo Parkinson, Parkinson Society Quebec, Newsletter, Spring 2009 and Summer 2009.

1 Health Canada reviews all drug products, including natural health products, to assess their safety, effectiveness and quality before theyare approved for sale. For information on drug and product databases, advisories and reporting adverse reactions, visit http://www.hc-sc.gc.caldhp-mps/prodpharma/index-eng.php.2 NOC/c is a form of market approval granted on the basis of promising evidence of clinical effectiveness. Health Canada has providedaccess to this product on the condition that additional clinical trials are carried out to verify the anticipated benefit within an agreed upontime frame (product monograph, February 20,2007).

4 | Parkinson's Medications

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Having Parkinson's does not mean you should sit

down and stop being active. Actually the opposite

Exercise, which includes being active,

stretching, practicing good posture and doing

specific exercises, should be a key component of

your daily life.

WHY IS EXERCISE IMPORTANT FOR PEOPLE WITH PARKINSON'S?

Being active is one of the most importanr things you can do

to maintain your physical and mental well-being. Exercise

is essential for maintaining your quality of life. Studies

clearly show that people with Parkinson's who exercise fare

better in the long run than people with Parkinson's who do

not exercise.

People with Parkinson's need to exercise to prevent the

negative effects of inactivity. MoVing, stretching and

exercising regularly will also help prevent secondary efFects

that may develop such as:

1 Poor posture

2. Poor balance

3. Decreased range of movemenr (losing fexibiliry)

4. Decreased strength particularly in the muscles that hold

you upright, resulting in a tendency ro sroop forward.

5. Decreased endurance (being out of breath or fatigued)

This booklet provides examples of basic exercises ro ger you

started to build your own program.

CHOOSE A VARIETY OF ACTIVITIES - AND MINUTES COUNT!

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Most people will say they gain strength, flexibiliry and

balance by being active. How can you be active? There are

many ways:

Aerobic activities such as:

. Using a treadmill

. Using a stationary bike or rowing machine

. 'Walking

. Swimming

. Dancing

Other activities such as:

. Yoga

. Tai Chi

. Pilates

' Golf. Gardening. Exercises - sitting or standing. And many more...

The greatest benefit comes from doing things that YOUenjoy. Some activities will give you more benefit than

others. However, consistency is more important than the

specific activity you choose to do. Perhaps do more ofwhat you are already doing. Begin with activities you can

do comfortably - listen to your body! Choose the time ofday that is best for you to do your exercises.

Gradually add minutes of activity to your program.

Minutes count and your goal is to build up your activiryIevel to a total of 30 to 60 minutes a day.

[t is never too late to become active. Here are some specific

ideas you can tn. to increase vour :rctivin'level:

Take a walk. 'W'alk

20 steps in r-our rlp111;. ri.'-'.'

. Then take 20 long rr-ps

. Then 20 normal stcps

. Then swing your arnrs ri,: l' ::-i.

. Repeat for the duration oi'.'o:: '.,..,..

Get offthe bus one stop earll r.r o.::.< :.--: ,-:: ..:block away

Use the stairs instead of the e ler arc.:

Lift cans of soup, or any small u'eiEr:. :. :r,--:.i:i vourarms (see strengthening exercisci :rir:..:.Do leg exercises while watching relevi.io:.

Join an exercise class. One of the besr \\'.r'..s iLr srev

motivated is to exercise with orhers. Conucr lourregional Parkinson Society for proerams rhar nrar- be

available in your communiry.Play your favorite music and dance or mo\'. ro rhe beat!

Remember, be sure to only choose actiuities tltdr -,,0u are s,tfe

doing. It is always wise to chech with your docror bt_fttrt

starting an exercise program.

A physiotherapist may be an excellenr resource tbr creatingan exercise program to suit you personallr-. Considerconsulting one.

Posture

Some of the first noticeable changes with Parkinson's

are in your posture. There is a tendency for the

shoulders to slump, the chin ro srick out, and rhe

elbows and knees to bend slightly. This makes the

following more difficult:

. Breathing deeply

. Swallowing

. Speaking clearly and loudly

. Moving, balancing, and walking

Tlt e fo llo w i ng p h o to i llus trates comm o n P a r h i r t s o t t's P o s t u re :

You can help slow down these changes.

1. MAKE GOOD POSTURE A HABIT

You can change your posrure. \(hen trying to develop good

posture, repetition is very important. These suggestions need

to be practiced frequently throughout your day - do not

think ofthem as exercises to be done once a day and then

1) Each day (as often as you can) check your posture. Standagainst a wall and be sure your lower back and shoulderBIADES are touching the wall. Try to pull the back of yourhead towards the wall as well. Do not TIP your head back.

As you walk away try to maintain this posrure. Recheck at thenext available wall. Or pick a spor in your home, ie. on the wayinto the bathroom or kitchen. Each time you walk pasr ir, srop

and do this posture check.

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3) f".ry time you sit in a chair, make your shoulder blades

touch the back of the chair. Hold for a few seconds. Do thisthree times, each time you sit down.

forgotten. Try to find a cue that will remind you ro

do these activities frequently. For example, if you are

watching TV, you could do one acriviry each time a

show breaks for a commercial.

2) tXfh." you wake up each morning, lie flat on yourback for 5 minutes, with just enough head support tokeep your head and neck from tipping back. Do nor press

your shoulders or head back into the bed. RElAXlAllowgravitty to stretch you as straight as possible. You may dothis on the floor or orher firm surface ifyou prefer.

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MAKE GOOD POSTURE A HABIT

4) Si,ri"g in a chair, relax forward and let your arms

and head hang down toward the foor. Then SLONflLYroll up, starting low in your spine and letting your head

come up last. Sit tall for several seconds. (If low bloodpressure is a problem, skip this exercise.)

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6) eoyti-. you are sitting or standing, gently pullyour chin straight in and straighten your neck. BE

SURE NOT TO TIP YOUR HEAD BACK. Hold this

position for five seconds and relax. Try not to let yourhead drop all the way forward again when you relax.

!) fi. face down on rhe bed. or on a mar on rhe floor withyour arms beside you. Gently puil your shoulder blades

together. Keeping your head and neck in a straighr line liftslightly. Hold for a few seconds. DO NOT LIFT ViITHYOUR LO\TER BACK.

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Begin End

2. BALANCE EXERCISES

Balance CAN BE IMPROVED. Try these exercises. Improving your balance will help you conrinue to perform daily tasks.\When doing exercises to improve balance, make sure you have a stable supporr nearby at all times.

Tandem Stance

1a) Stand near a table or counter and rest hand on it forsuppoft to start. Place one foot directly in front ofthe other.

Lift hand and try to hold that position for ten seconds. Putyour hand on the supporr, only if necessary. Repeat withother foot in front. Build up to holding the position forthirty seconds.

OR

1b) tf unable ro do previous exercise, try this:

Take a big step forward with one foot. Stand in this positionfor I minute. Try not to hold on to anything. Repeat withother foot forward. As you get better with this exercise, try 1a).

Single Leg Stance

2) Stand facing a table or counrer with both hands

resting on it. Lift one foot offthe foor. Now try to liftone hand and\(rHEN READYIift the other hand offthe support. Hold that position for at least ren seconds.

Try with the other foot. If you need to put your hands

down for balance, do so. Then start ro count again. Ifyou need to start with four or five seconds, that's okay.

Increase your time gradually.'Work toward holding forforty-five seconds on each side.

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3. FLEXIBILITY OR STRETCHING

Ifyou are less active and allow poor posture to develop,

gradually over time your muscles and joints will tighten.

Flexibiliry or stretching activities help you to maintain

good range of movement in all of your joints and muscles.

They are different than strengthening exercises because you

hold positions and relax, allowing your muscles to gently

stretch. Not everyone needs to do all of the following

stretches. Choose any that seem right for you. Choose one

or two to do before the strengthening exercises in the next

section, then complere rhe rest of your chosen stretches

after the strengthening exercises.

Safety Tips for Stretching Activitiesa. Stretch slowly without bouncing or jerking the

movements.

b. Hold rhe stretch in a comfortable position longenough for the muscles to relax

c. Aim for a stretched, relaxed feeling - avoid pain.

d. Breathe naturally - don't hold your breath.

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1) Sit tall on the edge of your sear. Turn your shoulders

to the right. Reach your right hand behind you and

stretch it towards your left hip. Turn your head and body

as well. Relax your muscles and hold that position for at

least ten seconds. STAY TALL! Repeat the other way.

2a) lf yo" are tall enough, stand in a doorway and rest

your hands on the frame overhead. Keep your arms

straight. Gently lean forward. Feel a gentle stretch in yourshoulders and chest. DO NOT OVER STRETCH! Holdfor at least ten seconds.

3) Stand in a doorway. Bend your right arm. Rest

your hand and forearm on the doorframe beside you.

Gently turn your whole body to the left. Feel a stretch inyour right shoulder and right chest. DO NOT OVERSTRETCH! Relax the muscles in that shoulder. Hold forat least ten seconds. Repeat the other way.

2b) St"nd facing a wall with your feet about a footfrom the wall. Place your hands as high up on the wall as

possible. Keep your head in line with your back. Gentlylean forward so that your nose touches the wall. Don'tarch your back. Feel the stretch in your shoulders and

chest. Hold for at least ren seconds. If this is roo easy,

take one step back and try from this position.

OR

Begin

FLEXIBILITY OR STRETCHING

5) U. on your back on a firm surface. Allow one leg to hang

over the side. Press your back flat on the firm surface. Relax

your leg that is hanging over, from the knee down. Feel a

gentle stretch in the front of your hip. Allow your hip muscles

to relax. Hold for at least ten seconds. Repeat with your otherleg hanging over the side.

6b) Sit on the edge of a chair. Move right foot back under

the chair so that your heel is slightly off the floor. Place your

hands on your right knee and press down until your heel

touches the floor. Allow your calf muscles to relax. Feel a

stretch in your heel and calf. Hold for at least ten seconds.

Repeat with left foot.

4) Sit tall in a chair. 'S7'ith

your right arm curved over

your head, slowly reach for the opposite wall. Do nottip your body. DO NOT BEND FOR\fARD. Feel a

stretch in your right side muscles. Hold for ar leasr ren

seconds. Repeat the other way.

6a) St""d facing a wall (or hold a chair back forsupport). Rest hands on wall for balance. Place your leftfoot a comfortable distance behind your right foot. Keep

your left leg straight, and keep the heel fat on the foor.GENTLY bend your right knee leaning towards the wall.

Feel a sretch in your left heel and calf. Hold for ar leasr

ten seconds. Repeat with the other leg.

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4. STRENGTHENING EXERCISES

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Strengthening exercises challenge your muscles to remain

healthy and strong. They require you to use your muscles

repeatedly in a specific, controlled way. They can include

activities such as golfor gardening or sPecific exercises.

tVhen you do regular activity and exercise you are:

. able to maintain and improve muscle strength

. able to improve balance and posture

. less likely to fall

. able to get around more safely

. able to carry out more daily activities.

Ifyou do not have access to an exercise facility or a

physiotherapist, here are some exercises that are particularly

useful for people with Parkinson's. Adjust these exercises

to suit your needs. If balance is a problem, stand behind

DO EACH EXERCISE TEN TIMES IF YOU CAN.

DO EACH EXERCISE SLO\TLYAND IN A CONTROLLED'WAY.

1) Sit ot stand tall. Keep elbows at ninety degrees. Pull

shoulder blades together in back. Then push your hands

apart or out to the sides while keeping your elbows close to

your body.

a sturdy chair that will not tip easily and use the chair

back for support. You may enjoy doing these exercises to

music. As you gain confidence in doing these exercises,

use the chair back less for support. Ifyou can eventually

do these exercises without the support of the chair, you

will be developing your balance even more.

All of the following exercises may not be right for you.

Choose the ones you feel safe doing.

Some people like to do all of their exercises at one time

while others prefer doing their exercises for short periods

at different times during the day. Either way is correct.

2) Sit i" a chair. Slowly straighten out one les. hold and

Iower. Repeat with other leg. To increase r-our strength.

add a small weight around your ank1e.

STRENGTHEN I NG EXERCISES

3) Sit or stand tall. Hold a can of soup or any smallweight in each hand. Push one hand towards the ceilingand lower. Repeat with other hand. Try ro push as high as

possible with each hand.

5) Stand behind a chair. If necessary, rest your hands on theback for supporr. Go up on your toes and come down fat.

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4) St""d with back against a wall. Hold a can of soupor other small weight in each hand. Palm turned down.Keeping your elbow against the wall, lift one arm nohigher than shoulder level. Repeat with other arm.

6) St"nd or sit. Pull up the roes of one foot and replace.

Repeat with other foot. You can do this one foot at a timeor alternating feet.

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7) Stand tall with feet apart. Rest hands on a chair back

for support if necessary. Slowly do small knee bends.

Concentrate on squeezing the muscles in your buttocls

when you straighten.

B) Stand tall. Hold the back of a chair for support ifnecessary. Keep your right leg straight. Lift your right leg

back as far as you comfortably can. Repeat with other leg.

9) St"nd tall with feet wide apart. Hold the back of a chair

for support if necessary. Lean on one bent knee and then

the other. -When you feel steady, try this without holding

on.

10) Exercises for the facial muscle groups can help to retain muscle integrity and the range of motion in the face and

mourh - helping the range of facial expressions. Begin with a gende rubbing of the face, like putting on cream. Repeat

each of the following exercises a couple of times:

. Sour Lemon - tighten your facial muscles as if sucking on a lemon, then relax

. Eyebrow raising/frowning - lift your eyebrows to look surprised. Frown, creasing your forehead towards your eves.

. Yawning - yawn dramatically

. Smiling - try smiling with your lips open, and then try again with your lips closed.

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5. ENDURANCE EXERCISE

March (around the room or outside). Ten steps.

March with long steps. Ten steps.

March. Ten steps.

March and swing arms. Ten steps.

Note; This can be done while sitting, just march

in your seat with no long steps. It is more fun withmusic.

To build endurance GRADUALLY increase the timethat you are walking.

THE MORE ACTIVE YOU ARE, THE BETTER YOU FEEL!!!

More active people prolong their independence whether or not they have Parkinson's.

Even if you have not been very active, once you get started your body will adjust. Just try

something ... a little bit every day will make a difference. When planning your exercise

program, it is best to choose a variety of activities to do on different days. For example, you

might do exercises on one day, go for a walk the next and go swimming or do tai chi the

nelit. Your schedule should suit your personal circumstances. Choosing a variety of activities

is not only better for your overall health and fitness; it is also less likely to lead to boredom

with your exercise program.

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lnformation and referrals are

Parkinson Society CanadaToll Free (National): (800) 565-3000Email: general.infopparkinson.cawww.parkinson.ca

Parkinson Society British ColumbiaVancouver, BCPh: (604) 662-3240Toll Free (BC only): (800) 668-3330Email: infoPparkinson.bc.cawww.parkinson.bc.ca

The Parkinson's Society of AlbertaEdmonton, ABPh: (780) 342-8993Toll Free: (888) 873-9801Email: j udydeverillpparkinsonalberta.cawww. parkinsonalberta.ca

Parkinson Society of Southern AlbertaCalgary ABPh: (403) 243-990rToll Free (Alberta): (800) 561-1911Email: hburnett@parkinsons-society. org

www.parkinsons-society. org

Parkinson Society Saskatchewan lnc.Saskatoon, SKPh: (306) 966-1348Email: [email protected]

www.parkinson.ca

Parkinson Society ManitobaSTinnipeg, MBPh: (204) 786-2637Toll Free: (866) 999-5558Email: howard.koks4parkinson.cawww.parkinsonmanitoba. ca

Parkinson Society Central & Northern OntarioToronto, ONPh: (416) 227-1200Toll Free: (800) 565-3000 ext.3372Email: [email protected]

Parkinson Society Southwestern OntarioLondon, ONPh: (519) 652-9437Toll Free (Ontario): (888) 851-7376Email: infopparkinsonsociery.cawww. parkinsonsociety. ca

Parkinson Society OttawaOttawa, ONPh: (613) 722-9238Email: psocPlri.cawww.parkinsons.ca

Soci6t6 Parkinson du Qu6becMontreal, QCPh: (514) 861-4422Toll Free: (800) 720-1307Email: infospparkinsonquebec.ca

www. parkinsonquebec. ca

Parkinson Society Maritime RegionHalifax, NSPh: (902) 422-3656Toll Free (NS, NB & PEI): (800) 663-2468Email: [email protected]

www. parkinsonmaritimes. ca

Parkinson Society Newfoundland & LabradorSt. Johnt, NLPh: (709) 754-4428Toll Free (NL): (800) 567-7020Email: [email protected]

CanadianPhysiotherapyAssociation

available at:

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This booklet was developed with input from physiotherapists at Canadian Movement Disorder Clinics and

reviewed by the Canadian Physiotherapy Association.

lzi Parkinson Society Canad

Socidtd Parkinso n Ca

Since 1965, Parkinson Society Canada has provided education, support services, advocacy and funding for research to

better understand the causes and to find a cure.

v1010

OUR MISSION

Parkinson Society Maritime Region is the

voice of Maritimers living with Parkinson's.

Our mission is to "Ease the burden; Find a

cure" through support services, education,

advocacy and research.

Parkinson Society Maritime Region

\'4 Socidtd Parkinson Regional Maritime

SUPPORTING

MARITIMERS

LIVING WITH

CONTACT INFORMATION

lsozl422-36s6(so2)422-37s7

t:.';i i,:,'. :,,,, : 1;,1-8QQ-663:2468

Parkinson Society Maritime Region is the

on ly registered not-for-profit organization

serving the Parkinson's population in the

Maritimes. We are comprised of over 20

volunteer-run Groups and a regional of-

fice based in Halifax. The Society is gov-

erned by a board of directors.

Our groups, found throughout NB, NS and

PEl, provide support at the community

level for those living with Parkinson's, their

family, friends and caregivers. They are

support groups, a place to share experi-

ences and good company. Many also oper-

ate as Chapters, working with the commu-

nity to build awareness and raise funds in

support of our programs and services.

The groups are upbeat, with the goal of

sharing anecdotes, experience, resources

and friendly humour. Speakers on a variety

of topics are common.

ln cooperation with our regional groups,

we organize a number of awareness and

fund raising activities.

Vogueopfiml iart

The Vogue Optical Parkinson SuperWalk is

our biggest fundraiser. Held in communi-

ties across NB, NS and PEI every Septem-

ber, SuperWalk has raised S20 million na-

tionally to fund vital research, education,

support and advocacy since 1990. We also

host a Corporate Walk, which garners sup-

port from the business community.

RANDONNEEPARKINSON

SUPERWAL(

A host of other events including porridge

and pancake breakfasts, wing-eating chal-

lenges, and dinner galas happen regularly.

Call us or visit our website for the latest on

what's happening in your community.

LA GRANDE

TOtt-FREE INFORMATION AND SUPPORT tINE

The Society's lnformation and Support Line is where

to turn after diagnosis. Callers can speak with

knowledgeable staff who understand living with

Parkinson's and who can offer support, direction

and information. Anyone curious about services

available in their community or who simply has a

question is encouraged to call us and learn more.

1-800-663-2468.

MARITIME PARKINSON PHYSIOTHERAPY CTINIC

The Clinic provides non-medical support for people

living with Parkinson's. Dalhousie Professor Dr.

George Turnbull and physiotherapist Janet Millar

meet with clients to assess and monitor functional

performance, educate clients and family members/

caregivers about how best to manage Parkinson's,

and prescribe specific home exercise programs and

lifestyle adjustments to minimize the physical mani-

festations of Parkinson's. Referrals are available by

calling us.

EDUCATION WORKSHOPS

The Society provides education workshops for

health care practitioners and offers public

information sessions and seminars designed to edu-

cate and raise public awareness of Parkinson's dis-

ease.

Parki nson Express E-NEWSLETTER

PSMR publishes an e-newsletter, Porkinson Express,

keeping readers up-to-date on the latest Parkinson's

news and research, alongside event updates and

stories from across the Region. To subscribe, visit

www. parkinsonmaritimes.ca

PARKINSON INFORMATION KITS

Available to anyone interested in learning more

about Parkinson's disease, these include material on

the progression of Parkinson's, medication manage-

ment, exercises for people living with Parkinson's

and more.

RESOURCE TIBRARY

Two resource libraries (Halifax, Charlottetown) pro-

vide books, videos, and DVDs on Parkinson's for

loan to anyone interested, free of charge. Hundreds

of titles are available; contact us for more informa-

tion.

IF WE DON,T KNOW YOU, WE CAN'T HELP YOU. CONTACT US TODAY.

1-800-663-2468

We exist because of the generosity of do-

nors. lf you wish to donate, thank you.

Your gift will help ease the burden and find

a cure for people in your community who

are living daily with the effects of Parkin-

son's.

Donors may choose from variety of op-

tions when giving:

Online via CanadaHelps.org

Power of 70 Monthly Giving Program

Memorial Donations

Bequests

Special Events

Corporate and Foundation Grants

Planned Giving

For more information call us

1-800-553-2468

Charitable registration number:

83353 9273 RR0001

Most groups meet monthly. Contact the

facilitator of a group near you for meeting

times, locations and more information.

ANNAPOLTS VATTEY (NEW MTNAS)Ted Teal (902)681-6811

ANTIGONISHSteve Wi llumsen (902l'7 35-2887

BRIDGEWATERMa ureen Brisson (902)543-4305

CAPE BRETON EAST (SYDNEY)Mary Langlois (902)539-8592

cUMBERLAND CO. (AMHERST)Ba rba ra Bueckert (506)536-1015

HAUFAX/DARTMOUTHCon nie MacM il la n (902)443-2624

HATIFAX CAREGIVERSNorma McPherson (902)445-3449

PrcTou co. (NEW GrAscow)Josep h ine Jol lymore (90217 52-67 9L

sAcKVtrrE/BEDFORDKevin McGuigan (902)865-9101

SAINT MARGARET'S BAYBarb Aris (902)876-0588

TRUROJ i m Gates (9021895-5227

YARMOUTHMau ritta Fevens (90217 42-2446

Revised March 2077

ilzf,"n"a"H"lps.org.f o,r,nF h.d.

'hprt PO\Y,1ERd rnn


Socidtd Parkinson Regional Maritime y Clinic

Janet Millar, B.Sc.,Dip.PT

... is a licensed physiotherapist, withvaluable experience in communitybased exercise and support programs.

Janet has more than forty years

experience in the field of adultneurological impairment.

George Turnbull, BPT PhD.

... is a Professor of Physiotherapy atDalhousie University. George has

over forty years experienceeducating, researching and practicingin the field of adult neurologicalimpairment. He has extensiveknowledge of Parkinson's and has

published and spoken worldwide onthe subject.

The Maritime Parkinson Clinic

... is fully funded by Parkinson SocietyMaritime Region and serves clientsfree of charge. The clinic has been inoperation since 2000 and offersindividualized assessments andphysiotherapy protrams to People

Living with Parkinson's throughoutthe Maritimes.

Maritime Parl<inson Physiotherapy

The clinic provides non-medical(physiotherapy based) support forpeople with Parkinson's who residein the Maritime provinces.

Assess and monitorfu nctionalperformance

Communicatecli nic f ndi ngs tocl i ent's neurol og st/fami I yphyiscian

Educate those with Parkinson'sthei r fami I i es. caregrvers, supportgroupsand other health careprofessi o nal s regardi ngParkinson'sand newdevel opments i n its management

Prescdbe. based on individualneeds. home exercise programsand lifestyle adjustments tominimize the physicalmanifestati ons of Parki nson's

Referto other health careprofessi o nal s for specifi cproblems

What we do

The ClinicFocuses on

,;:,.' Physiotherapy

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The clinic focuses on physiotherapyintervention.

Following an assessment that includesgait and balance, and discussion witheach client, an individualized exerciseplan can be developed. This is based oneach person's interests and hobbies. ltmay include any of the varied types ofexercise including exercise to music

and/or advice on current lifestyle.

Programs are developed based on an

individual's personal needs, interestand lifestyle.

The aim is to prevent the secondarycomplications of Parkinson's.

Families are essential to this process

and are encouraged to be a part of it.

The Clinic'sgoals are to:

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The Maritime Parkinson

Physiotherapy Clinic

is funded by:


ir4 Socidtd Parkinson Regional Maritime

I 50-707 I Bayers Road

Halifax, Nova Scotia

83L 2C2Phone: (902)422-3656

Fax: (902)422-3797Toll Free: I -800-663-2468

Email: [email protected]

With additional support from:

Dalhousie University

School of Physiotherapy

For a clinic appointmentplease call:

(902)4e4-6484

Clinic Details

Location:

The School of Physiotherapy

4th Floor5689 UniversityAvenue

Halifax, Nova Scotia

83H 3Js

Appointment Phone:(902)4e4-6484


is a national organization

with partners from coast to

coast. We share a vision to

ease the burden and find a

cure through research,

education, advocacy and

support services to improve

quality of life for all those

affected by Parkinson s. Ask

us about Parkinson Post, our

quarterly magazine.

Call your local Parkinson office forinformation, programs and services in your

area, or to make a donation.


Socidtd Parkinson Regionat Maritime

7071 Bayers Road, Suite 150Halifax NS B3L 2C2PH.: (902) 422-3656Toll Free (NB, NS & PEI): 1-800-663-2468Fax: (902) 422-3797psmr@pa rkinson mariti mes.cawww.parkinsonmariti mes.ca

The contents of this document are provided for information purposes

only, and do not represent advice, an endorsement or a recommenda-

tion, with respect to any product, service or enterprise, andlor the

claims and properties thereof, by Parkinson Society Canada.

One in a series of brochures produced by


w Parkinson Society Canada

Soci6t6 P arkinso n Canada

Parkinson's:The Facts

w

Ease the Burden; Find a Cure

w Soci6t6 Parkinson Canada

1 -800-56s-3000www.parkrnson.ca

e-mail : [email protected]

lD#G/001/Feb10


ou or someone you know has just been

told "You have Parkinson's". What is

it? What do you, your family and friends

need to know about how it will affect your

life? We're here to answer your questions,

offer support and reassure you that you're

definitely not alone!

The first thing people hear about Parkinson's

is complicated medical language. lt's often

confusing and a little frightening. Here are

the simple facts about Parkinson s in a way

everyone can understand.

What is Parkinson's? I

Movement in our bodies is normallycontrolled by a chemical called dopamine.carries signals between the nerves in ourbrain. When cells thatnormally producedopamine die, thesymptoms of Parkinson s

appear. lt's called a neuro-degenerative disease.There currently is no curebut many promisingresearch projects are underway. You can live

with Parkinson's for years. Parkinson'sprogresses at a different rate in each person.

How is Parkinson'streated?

diagnosed and

I

A diagnosis of Parkinson's can take time. Afamily doctor might notice it first. You maybe referred to a neurologist - a specialistwho deals with Parkinson's. There are no x-rays or tests to confirm Parkinson's. 5o theneurologist will check your medical history,do a careful physical examination and certaintests, and rule out other conditions whichmay resemble Parkinson's.

The most common symptoms are:

tremor

slowness and stiffness

impaired balance

rigidity of the muscles

Other syrnptoms that may occur insome people:

fatigue

soft speech

writing problems

stooped posture

constipation

sleep disturbance

Parkinson's is treated with medication, whichcan lesson the symptoms. Physical andoccupational therapy and exercise arebeneficial and can improve flexibility andreduce stiffness.

As symptoms evolve, more medication is

needed. You need to know that while drugswill help you function better, they are notperfect and many cause side effects.

ln some circumstances, a small percentage ofpeople with Parkinson's may benefitfrom surgery.

If you have Parkinson's-take charge of your own health

;

Find a doctor you like and trust, ideally

a neurologist. Listen to his/her advice

about treatment. Make decisions based

on correct information.

Finding the right treatment balance

takes time. Make a list of what does

and doesn't work, and share it withyour health care team.

As your symptoms evolve, your treat-

ment will need to be adjusted There

are many treatment options which may

benefit you as your condition changes.

You are unique! Your progress,

symptoms and drug treatment will

most likely be different from otherpeople with Parkinson's.

Exercise, exercise, exercise. Walk every

day. Ask a friend or family member tojoin you. See a physiotherapist who can

recommend exercise and stretches to

suit you.

Eat properly. lnclude fibre and fluid inyour diet to control constipation - a

common problem for many people

with Parkinson's.

Keep informed. Learn as much

as you can about the illness. To

learn more, call us or visit

www. parkinson.ca to get

up-to-date, reliable information.

Join one of many support groups

across Canada which offer practical

tips, exercise programs, a sense ofcommunity and support. Get

involved !

Talk to your doctor if you feel

depressed. Depression can be a side

effect of Parkinson's but it can be

managed.

Continue doing the things you love

to do. Parkinson's will always be part

of your life but you can learn toadapt activities to your level of ability.

Ask for help. You are not alone. Call

Parkinson Society Canada at1-800-565-3000

www.parkinson.ca&

F-&,

tu

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ry

Frequently Asked Questions ;

ls Parkinson's a natural part of aging?NO

ls it contagious?NO

Are Parkinson's and Alzheimers part of thesame condition?NO

Does Parkinson's run in families?

There may be a hereditary predisposition toParkinson's in a small percentage of cases.

l've heard there's nothing you can do aboutParkinson's. ls that true?

Theres lots you can do - exercise, take yourmedication, talk to your health care teamabout how you feel, join a support group,ask for help ... and contact ParkinsonSociety Canada.

Parkinson'sI

... is a chronic neurological conditionnamed after Dr. James Parkinson, a Britishdoctor who first described it in 1817

... affects nearly 100,000 Canadians -

both men and women from all ethnicbackgrounds

... is not only found in older people ... itcan affect people even as young as 30 or40 ... however, the average age of onsetis 60

... is treated through medication andrehabilitation - physical therapy benefitsmobility, flexibility and balance; occupation-al therapy helps with day-to-day living activ-ities; speech therapy assists with voicecontrol and swallowing

... research in Canada has contributed toremarkable discoveries ... some researchersare confident a cure is within theforeseeable future

Parkinson Societl' Canada

is a national organrzation

with partners from coast to

coast. We share a vision to

ease the burden and find a





affected by Parkinson's. Ask

us about Parkinson Posf, our

quarterly magazine.

Call your local Parkinson office forinformation, programs and services in yourarea, or to make a donation.

Parkinson Society Xlaritinte Regionw Socidt6 Parkinson Regional Xlalitinte

7071 Bayers Road, Suite 150Halifax NS B3L 2C2PH.: (902) 422-3656Toll Free (NB, NS & PEI): 1-800-663-2468Fax: (902) 422-3797psmr@parki nsonmaritimes.cawww. parkinsonmariti mes.ca

The contents of this document are provided for information purpases

only, and do not represent advice, an endorsement or a r-"commenda-

tion, with respect to any product, service or enterpnse, and/or the

claims and properties thereof, by Parkinson Society Canada



lzi P arkinson Society Canada

Socidtd Parkinso n Canada

Parkinson's:Where to

get the helpyou need



1 -800-565-3000www.parkinson.ca

e-mail: [email protected]

lD#G/OO5iFeb 1 0


ou've been told you have Parkinson's. You

know it can't be cured but your long-term

goal is to remain healthy and active and mini-

mize the impact of Parkinson's on your life.

You are in charge of your own health. But, if

and when you need advice

about Parkinson s, there are

many resources available in

your community and people

willing to help. Your local

Parkinson organization is an

integral part of your support

team - see the back of this

brochure for local contacts.

They can help connect you

with

the supportive network of others

with Parkinson's.

Parkinson's progresses over many years and

at different rates for each person. A variety of

health care professionals could play a vital

role in helping you manage your symptoms.

Develop an ongoing relationship with people

you like and trust. ldeally, they should have

experience dealing with Parkinson s.

Your Medical Team ;

I Family Doctor - the person you willsee most over the years ... he/she looksafter your general health care, conductsannual physical examinations and keeps

all your medical records ... initially yourdoctor may not know a lot aboutyour disease so, as you learn, he/she

may also learn more about themanagement of Parki nson's

Neurologist - a specialist who will eithermake or confirm the Parkinson's diagno-sis, find the right balance of treatmentand make regular adjustments to yourmedication to ensure its working effec-tively ... visit him/her at least twice a year

... you might want to see a neurologistwho specializes in movement disorders

Parhinson's Nurse Specialist - you maybe fortunate to have a movementdisorder specialist who works with a

nurse to help manage your condition ...

this nurse can provide information aboutcoping with day-to-day challenges ofParkinson's and advice on how to adjustto changes in medication ... he/she is avital link to other members of your healthcare team and can recommend anddirect you to the help you need - whenyou need it

Pharmacist - an important part of yourteam ... make sure you use the samepharmacy outlet all the time and that ithas a record of all your medication ...your pharmacist can ensure over-the-counter medication and vitamin supple-ments do not adversely interact with yourprescription drugs ... he/she can provideinformation about provincial drug reim-bursement plans and medical coverage

I

T

I

I Psychiatnst - an expert in mental

health problems like depression, a

common condition for people withParkinson's ... some patients developproblems like hallucinations, paranoia

and other symptoms which require

specialized treatment

I Other medicalprofessionals - many

experts are available to address othermedical concerns ... for example, a

urologist is an expert in urinary prob-

lems and male sexual dysfunction ...

these could be a result of Parkinson's,

aging or your medication ... don't just

accept these concerns ... ask for help

Additional Members ofYour Team

When you have a concern, don't wait.There are specialists available to help youevery step of the way.

I Physiotherapist - assesses problemsyou're having with mobility, balance

and posture and recommends sports or

exercise programs in your community,

suited to your abilities ... he/she can

also offer techniques on how to move

safely, especially around the house

I Occupational Therapist - helps you

solve mobility problems you're facing at

work, with leisure activities and withpersonal care and grooming, suggests

equipment to buy (e.9. walker) orchanges you can make to your home(e.9. bath bars and ramps) ... this

advice could avoid costly mistakes and

includes a look at tax-deductiblepurchases

Slteech Language Pathologist - findsways to help rmprove your voiceprojection or to cope with swallowingproblems and saliva control

S ocicil Worher lP sy cholo gist - g ives

advice on emotional, financial andfamily concerns related to yourParkinson's ... he/she provides

individual or family counselling abouthow to adjust to the changesParkinson's is making in your life ... a

social worker knows how to access

available community resources and findthe right financial assistance program

for you

Dietician - advises on how to plan ahealthy diet and maintain the right-weight...he/she will show you how toinclude enough fibre and liquid in yourmenu planning...you can also get ener-gy-saving tips on meal preparation ...

advice is also available on how foodand your medication may interact

www.parkinson.ca

I

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I

If you're a person withParkinson's, you're not alone! ;

It can be difficult to ask for help. Now youmay find you can't do all the things youused to, and you may be worried aboutthe future. lf you need it, help is available.

... keep informed ... learn all you canabout Parkinson's ... call us or visitwww. parkinson.ca to get up-to-date,reliable information

... look for a support group in your area tolearn how others manage Parkinson's ...ask them how various professionals havehelped

... when you visit members of your team,be prepared with a list of questions andconcerns ... bring a notebook to writedown what they say ... ensure they send a

written report to your family doctor andneurologist

... establish a good relationship with yourteam ... ask for and make sure you get thehelp you need to cope with your disease ...allow them to learn with you about how tomanage your Parkinson's

... keep an up-to-date list of themedication you take ... make sure eachmember of your health care team hasa copy

Look for other professionals tohelp you plan for the future! I

Everyone needs to be prepared for thefuture but most of us tend to put off mak-ing financial and legal plans.

Long-term financialplanning should start as

soon as possible. Find aspecialist in retirementand estate planning.Look into your currentmedical coverage andinsurance to determinewhat you'll need for thefuture. Check to ensureyou have long termdisability coverage. Ongoing drug therapymay not be covered under your existingplan. Learn how you can protect your assetsand keep your credit rating in good stand-ing. Ask an accountanVtax expert aboutways to maximize tax deductions.

Make sure you have awill and appoint anexecutor. Get advice onwhat legal documentsmight be required sothat your wishes onfinances, medical andpersonal care arehonoured if you becomeincapacitated.

What can you do to get themost help from your HealthCare Team?

Parkinson Society Canada is a

national organ ization with

partners from coast to coast. We

share a vision to ease the

burden and find a cure through

research, education, advocacy

and support services to improve


affected by Parkinson s. Ask us

aboul Parkinson Post, our

quarterly magazine.

Call your local Parkinson office for information,programs and services in your area, or to makea donation.

Nt 7 Parkinson Society Maritime Regiona\/ I

\ / / Socidtd Parkinson Regional Maritime

830-5991 Spring Garden RoadHalifax, NS B3H 1Y6Ph: 902-422-3656Toll free: (NS, NB, & PEI) 800-563-2468Fax: 902-422-3797Email: [email protected]. pa rki nsonma riti mes.ca


w

Ir7f Parkinson Society Canada

\/ ) Soci6t6 Parkrnson Canada

1 -800-565-3000www.parkinson.ca


lD#G/0O3iSeptO3



Socidtd Parkinso n Canada

Parkinson's:How you can

get a betternight's sleep


F

fi t one trme or another, everyone has troubleAgetting a good night's sleep. However, ifyou're a person with Parkinson s, you mightfrequently experience fatigue and lack of sleepas part of your condition.

There could be many reasons for this: a sleepdisorder, anxiety, depression, an overuse ofstimulants like caffeine or nicotine, problemswith your medication, daytime sleepiness.

lf you can, schedule a nap at the same timeevery afternoon - it will rest your muscles,relieve tension and aches and "recharge yourbattery." Make sure it's no longer than an hourso it won't interfere with your overnight sleep.

You and your caregiver can help your doctorfigure out whats causing your insomnia bykeeping a record of your sleep habits for a fewweeks. Here are some things you can keep trackof and discuss:

During the day, do you fall asleep before orduring your mid-day or evening meal ... withcompany ... watching television ... riding in thecar ... when you start reading? At night, do youtake something to help you s/eep . .. go to bedafter midnight ... take an hour or more to fallasleep ... wake up more than once ... wake upoften to urinate ... get less than two to fourhours s/eep . .. wake up for the day before 4a.m.? Are you groggy when you're awake andwhen you wake up?

" -49'ffirw Why is sleep so important to a'''. person with Parkinson's?

|,',Being well rested means you will... be able to

*ry better manage your symptoms... getmaximum benefit from your drug therapy

'' .. :' ... perhaps experience a 'sleep benefit' - a=*-.J period when you're symptom-free after

ir'.ri waking ... enjoy your daily activitiesE;,

ft'H

What if I just can't sleep? ;

get out of bed and go to another room.Sit quietly, try to read a book or magazine,eat a small snack

when you start feeling tired, go back tobed. lf you still can't sleep after 15 or 20minutes, repeat the process until you fallasleep

your doctor may prescribe something tohelp you sleep. Taking sleep medication, ifproperly prescribed, may improve response

to your medication and allow you tofunction better

Don't ignore sleep problems. Talk to yourdoctor if sleep medications are noteffective. He/she may refer you to a sleep

specialist who treats sleep disorders

T

I

I

I

Share your observations with your doctor andlisten to any advice he/she gives. Pay attentionto any strategies that work for you. The follow-ing simple guide of S/eep Do's and Don'ts may

also help you wake refreshed each morning.

Regular Routine;

I go to bed and wake up at the same time

every day. Keep your routine the same on

weekends or holidays

I eat properly and maintain a healthy weight

The Bedroom I

I maintain a comfortable temperature and

keep the room quiet

I use a night light to prevent falls if you have

to get up in the middle of the night

The Bed I

make sure it has a firm mattress and is high

enough so you can sit comfortably

use a soft pillow which can be positioned

for greater comfort

cover yourself with light bedcovers and

wear loose-fitting pajamas or nightgown

sleep on your side - try putting a small softpillow between your knees if you have a

sore back or hips

sleep in the bed - limit television watching

or reading while in bed

get separate beds if it will help you and

your partner get a good night's sleep or

consider separate covers if you share

a bed

Exercise;

r do some sort of physical exercise early in

the day - gardening, walking, housekeep-

ing, swimming or other sports

I spend some time outdoors every day toget some fresh air

I avoid strenuous exercise for at least twohours before you go to bed

Eating and Drinking;

only drink stimulants like coffee and tea

early in the day. lf you drink alcohol

consider cutting back

avoid liquids after 7 p.m. to limit

bathroom trips during the night

don't go to bed hungry - have a light

snack, preferably something easy todigest. Eat your main meal earlier in the

day

Avoid These Things ;

I hot showers before bed - opt for a

lukewarm bath instead

I smoking - cut down on your smoking,

especrally in the evening

Personal Medication Record ;

Keep an accurate, up-to-date list of themedications you take. Make sure your healthcare team has a copy. This will ensure newmedication or dosages will not interfere withyour sleep schedule/patterns. Using the samepharmacy outlet all the time ensures they have

a record of all your medication.

I

I

Parkinson Society Canada is a

national organization withregional partners from coast

to coast. We share a vision toease the burden and find a





affected by Parkinson's.

Call your local Parkinson office for information,programs and services in your area, or to makea donation.


Soci6t6 Parkinson Regional Maritime

830-5991 Spring Garden RoadHalifax, N5 83H 1Y6Ph: 902-422-3656Toll free: (NS, NB, & PEI) 800-663-2468Fax: 902-422-3797Email: [email protected]. pa rkinsonmariti mes.ca

The contents of this document are provided for information purposes only,

and do not represent advice, an endorsement or a recommendation, withrespect to any product, service or enterprise, andlor the claims and proper-ties thereof, by Parkinson Society Canada.

One in a senes of brochures produced by



Soci6t6 Parkinso n Canada

Parkinson's:How you can be

a supportivecareglver



1 -800-s6s-3000www. parkinson.ca


lD#G004/Aug09


ou probably clearly remember the day

when someone close to you was told "You

have Parkinson's disease". Now you are consid-

ering how you can develop your role as an

effective caregiver/ carepartner to this person

with Parkinson s (PWP).

No one is really prepared to be a caregiver. you

may feel overwhelmed with your new responsi-

bilities. You know there is no cure for

Parkinson's and the PWP will need even more

help as the disease progresses. You know your

lives will never be the same.

How can I help? Where do I start? |

The first step is to discuss and agree with thePWP on the role you will play. The PWP willmake the decisions but you want to be there -to offer physical and emotional support whenits needed. You need to talk about how yourinvolvement can change as Parkinson's evolves.

Then form a partnership with the PWB healthcare team, family members and friends. Eachhas a contribution to make and a role to play inmeeting the challenges of Parkinson's.

The more information you and the PWp have,the better equipped you will be to cope withday-to-day obstacles.

What does it mean to be a

caregiver/carepartner?

A caregiver can be a partner, spouse, friendand/or adult child caring for a person withParkinson's (PWP)

Caregiving can be a demanding job involvingcompromise, encouragement and strength

It means realizing the PWp is in control andneeds and wants your support to live as inde-pendently as possible

It means accepting thatalthough there is no cure yetfor Parkinson's, managementof its symptoms can lead to afull, productive life

It means looking for ways tohelp a PWP cope with thedaily challenges of living

It involves gathering infor-mation and working witha health care team toensure the right treatmenlbalance is achieved

It requires recognizing thesigns of depression in aPWP and seeking help as

It means asking for helpfrom your doctor, family,friends and local Parkinson'sorganization

soon as possible

It leads to a variety of emotions - especiallyfrustration and possibly guilt... a very normalreaction to a complex situation

Listen to the doctor's advice.Review what he/she recom-mends. Talk about availabletreatment options. Learn howthe symptoms of Parkinson'scan be managed.

You will hear about medical breakthroughs in themedia. These can sometimes create unrealisticexpectations about 'miracle cures' for Parkinson's.Get up-to-date, reliable information bycontacting your doctor, calling us or visitingvwvw.parkinson.ca.

Medication management is the most importantpart of controlling Parkinson symptoms. Thedoctor will provide guidelines on when medica-tron should be taken. You can help by keeping a

record of medication effectiveness as well as sideeffects including nausea, confusion,hallucinations or abnormal movements. Does thePWP feel better when the medication is takenbefore or with a meal or on an empty stomach?Does a new drug cause undue anxiety? Shareany observations with the doctor.

A PWP will have 'good' and 'bad' days. So willyou and that's okay. Listen, be patient andunderstanding. Look for signs of depressionwhich could include angel change in personalhabits, withdrawal. Seek support if needed, andencou rage social ization.

Exercise, especially walking, is essential therapyfor someone with Parkinson's. lt's good for you,too. Make exercise a part of the daily routine.You might look into a stretching program or a taichi class - ideal exercises for people withmobility issues.

As Parkinsonb progresses, one of the toughesthurdles you both will face willbe coping with emotions. Talk

about ways you can help relievestress, provide physical assis-

tance and meet special needs.

You may need to adjust or find new activitiesto enjoy together to remain close.

The PWP may experience problems with med-ication and potential side effects, constipation,sleep problems, speech and communicationsdifficulties and mobility issues. We can help -ask us for information on these topics.

How can I take care of myself? ;

Contact us to determine what kind ofsupport groups are available in your area

for you and the PWP These are a good

opportunity to listen, learn and share

experiences.

Know your limitations. Parkinson's is

progressive so it may be increasingly

difficult to care for a PWP by yourself.

Look into homecare, day programs or help

from your family members.

Every caregiver needs 'time out' on a reg-

ular basis. Take a break and see friends.

Ask for and accept support. Make a list oftasks others can do. People want to help -include them in the caregiving plans.

Find someone you trust when you're

feeling low or need to talk about some ofyour feelings. Get help when you are

feeling stressed. And, remember, you are

not alone!

www.parkinson.ca

I

T

I

T

Parkinson Society' Canada

is a national organization

with regional partners

from coast to coast. We

share a vision to ease the

burden and find a cure

through advocacy, educa-

tion, research and support

services to improve quality

of life for all those

affected by Parkinson's.

Call your local Parkinson office forinformation, programs and services in yourarea, or to make a donation.

D.9{ Parkinson Society Maritime Region

\/)s*dtoe^ry830-5991 Spring Garden RoadHalifax, NS B3H 1Y6Ph: 902-422-3656Tollfree: (NS, NB, & PEI) 800-663-2468Fax: 902-422-3797Email: [email protected]. pa rki nson ma riti mes.ca



Soci6t6 Parkinson Canada

1 -800-56s-3000www.parkinson.ca


lD#G/006/5ept02


V P arkinson Society Canada

Soci6t6 Parkinso n Canada

Parkinson's:What you can

do to preventand relieve

constipation


For the majority of people with Parkinson's,constipation can be a major problem. lfyou're constipated, it can be caused by avariety of factors:

I your intestines move more slowly

because of your Parkinson's ... it's also

difficult to expel a normal stool

I the medication you take

I not enough exercise

I a low-fibre diet

I dehydration and not enough fluids

I ignoring the natural urge to have a

bowel movement

I overuse of laxatives

There are certain dietary and lifestylechanges you can make to help preventconstipation. Do not be embarrassed to talkabout it with your doctor or pharmacist andseek his/her advice.

Stay active I

Exercise helps promote regularity. Find anactivity you enjoy and make it part of yourdaily routine. When the weather is nice,walk with a friend or pet. lf you can't gooutside, walk briskly around a local mall orup and down the hallway or stairs of yourhome or apartment - several times a day.

Find out about exercise programs in yourarea. You can also visilwww.parkinson.cafor more information.

Eat right;

You can become constipated if you don'thave enough fibre in your diet. Why is fibreimportant? High-fibre foods and plenty ofwater are needed to keep stools soft, bulkyand easy to pass.

Excellent sources of fibre:

I unpeeled apples, raspberries, potatoes

with the skin on, broccoli, green beans,

pea soup, bean salad, baked beans

Good sources of fibre:

I whole-wheat grain products - breads,

rolls, crackers and pasta

I high-fibre cereal like oatmeal and bran

cereal - check the nutrition label toensure there are at least 4 grams ofdietary fibre per serving

I legumes - cooked dried peas, beans

and lentils

I fruits and vegetables with edible skin -cooked or raw - nuts and dried fruitsuch as apricots, dates, figs and raisins;

dried prunes are especially effective

I brown rice

lncreasing the fibre in your diet requires a

conscious effort on your part. Do it graduallyover a period of six to eight weeks. Asudden increase in fibre could causecramping and/or gas. lt will take a long-termcommitment to make the changes necessaryto improve regularity and maintain a well-balanced diet.

When you eat more high-fibre foods, youneed to drink more water. lncrease yourwater intake slowly until you're up to atleast eight glasses a day. Hot liquids oftenstimulate bowel activity - try a glass of hotlemon water first thing in the morning. lfyou're going out, take water with you.Avoid drinking after dinner, to preventfrequent waking during the night forwashroom visits.

Other helpful advice;

establish good bowel habits. Try to

establish a regular time to at least try

to have a bowel movement; take

your time

look for cookbooks with high-fibre menu

ideas. Try either of these fruit-lax recipes.

Soak 1 pound mrxed drted fruit rn

cranberry jutce overnrght. Chop rnblender and store rn refrrgerator. Have

1/2 to 1 cup of the mrxture every

morning with cereal or yogutt.

Soak 1/2 cup each of dried raisrns, dates,

and dried prunes overnrght rn enoughwater to cover them. Chop rn blenderand add 1/2 cup of molasses and 1 14

cup of wheat bran. Store in refngerator.

Take 2 tablespoons every morntng.

eat meals and snacks at regular times

don't skip meals, especially breakfast

ask your doctor to refer you to a

qualified dietitian for menu advice

turn to friends and family for help withshopping and cooking, if you need it

Medications can be used to treatconstipation if diet and lifestylechanges do not help

I

I psyllium (e.9. Metamucil) adds bulk and

is usually the first choice; you need todrink plenty of fluid with it (at least 1

full glass) to avoid worsening the

constipation. Try splitting the once daily

dose into three doses

I a stool softener, lactulose syrup (e.9.

Acilac or Duphalac) or glycerin

suppositories can help to soften stools

and make them easier to pass

I stimulant laxatives (e.9. senokot,

bisacodyl, cascara) help the bowels

move; one of these agents can be used

if other medications are not effective

I enemas (e.9. Fleet) are usually reserved

for prolonged constipation but typically

produce fast results and more than one

bowel movement; use an enema in the

morning to avoid nighttime bowel

movements

Ask your pharmacist or doctor for moreadvice on medications for constipation oron correct doses or suggestions.

IIT

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r;i.l,1J

ffi

Drink plenty of fluids ;

lf you have a pre-existing health conditionsuch as diabetes, heart disease, etc. please

be aware the suggestions in this brochuremay not be appropriate.

What is constrpation?

Having fewer bowel movements than usual

for you with difficulty passing stools.

Constipation Facts

There is no right number of daily or weeklybowel movements ... for some, regularitymay mean two bowel movements a day orthree or four a week.

What aboutlaxatiyes?

Avoid overuse of laxatives, as this may lead

to dependence on them, and may make

constipation worse. Use laxatives as

occasional remedies only.

Why should a person with Parhinson'sw ort)t about constrpation?

The absorption of your medication can be

slowed and benefit minimized.

lf not treated, there is a possibility the bowelcould twist and cause a blockage.

lnstead of worrying, take action. There are

solutions !

You should see your doctor if there aresudden changes in your bowel habits orif you have been constipated for sometime. lf you experience a sudden onset ofacute abdominal pain - along withpersistent constipation - get immediatemedical attention.

A more detailed bowel management program toprevent and relieve constipation is available bycalling 1 -800-565-3000.

Documents

Information on Parkinson's