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           easing the burden: Parkinson Society Canada: info for
                       long-term-care health workers
          an html version (27k) of the original PDF file (2,200k)
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     What You Need to Know About Parkinson’s

     Information for Health Care Staff at Long-Term Care Facilities

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        * Introduction
        * What is the most important thing you need to know about
          Parkinson’s?
        * What are a Parkinson’s resident’s main mobility problems?
        * What else can I do to make a difference in the life of a
          resident with Parkinson’s?
        * Information is power!
        * Contact information and assistance
        * Tip Sheet

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     Introduction
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     As a person working in a long-term care facility, you know how
     challenging your work day can be. You have a hectic schedule and
     there are many demands on you - including a large caseload and
     the emotional highs and lows that come from dealing with frail
     residents with a variety of illnesses.

     From time to time, you will be dealing with residents who have a
     neurological disorder called Parkinson’s disease. Your interest
     in learning more about the unique characteristics of this disease
     will help you understand and better meet the special needs of
     your Parkinson’s residents and their families. People living with
     Parkinson’s have a shortage of a chemical called dopamine so
     messages sent from the brain are not processed properly. They may
     have tremor, stiffness, slowness and difficulty with fine
     movements, impaired balance, soft speech, and little facial
     expression.

     They will probably suffer from sleep disturbances, and be very
     tired during the day as everyday tasks take longer. They will
     probably be constipated and may be depressed. It is important to
     note, however, that symptoms and responses to medication differ
     greatly in each person with Parkinson’s.

     By the time you meet residents with Parkinson’s, they may have
     lived with it for 15 to 20 years, gradually losing their ability
     to live independently. Most will have been cared for at home by a
     partner/spouse or other family member. But, because the disease
     is progressive, they now require more formal care.

     Parkinson’s is a neurological disorder. People with Parkinson’s
     can at times lack facial expression. The grim, set or ‘masked’
     look is a Parkinson’s symptom - stiffness or rigidity affects
     muscles, including facial ones. As the disease progresses, it can
     result in slowed thought processes and responses or speech
     difficulties. Parkinson’s can cause the voice to lose volume and
     become monotone. Also, saliva can collect in the front of the
     mouth, resulting in drooling.

     It is important to stress that Parkinson’s is not a mental
     disease, although 30 percent of people with Parkinson’s will
     eventually develop dementia. Residents with Parkinson’s may have
     been admitted to your facility because they have developed
     dementia and could no longer be cared for safely at home.

     Problems caused by Parkinson’s can be frustrating and
     embarrassing for your resident and challenging and exhausting for
     you. People with Parkinson’s say their life can be lonely and
     boring because they often feel trapped in their own bodies.
     Please remember Parkinson’s residents are not being unresponsive
     or antisocial. They just need a little extra time to respond.

       "I just got out of my chair on
       my own five minutes ago. Now I
       can’t. I’m afraid the staff
       think I’m simply being
       stubborn. But the reason I
       can’t move is that my
       medication has stopped
       working. I never quite know
       when this will happen. I want
       to be independent and do
       things myself but sometimes I
       do need staff help."

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     What is the most important thing you need to know about
     Parkinson’s?
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     Medication is the most effective treatment for Parkinson’s.
     Symptoms differ in each person so treatment is geared to specific
     individual needs. To maintain a constant drug level in the
     bloodstream, medication must be given on time - according to the
     schedule set by the treating physician. It is based on what has
     worked well over years in a home setting. Parkinson’s can be
     unpredictable.

     Sometimes, a person is able to move one minute, then suddenly
     he/she cannot take a step. This is called freezing and it can
     last from 30 to 60 seconds or more. The resident living with
     Parkinson’s is not being stubborn - difficulties are due to
     medication timing.

     We recognize your nursing teams have tight schedules with
     established times for the administration of medication. For
     maximum benefit, medication for a resident living with
     Parkinson’s will most often have to be administered at times
     other than on general medication rounds. Perhaps your nursing
     teams can talk about ways medication can be scheduled at
     different times for residents with special needs.

     If you work together with Parkinson’s residents and their
     families - who best understand their condition and responses to
     medication - it will definitely ease your workload and improve
     their quality of life.

     Find out what works best. For some residents, medication takes
     about an hour to ‘kick in’. So activities such as dressing and
     eating can be scheduled around this timing. Remember: the more
     mobile a resident is, the more he/she can do; this will
     definitely ease your workload.

     Side effects from Parkinson’s medication may vary from person to
     person. Sometimes the drugs make residents too mobile, with
     writhing movements. If a resident starts new drugs he/she can
     feel nauseated or dizzy for the first weeks. In late stage
     Parkinson’s, drug side effect will most often be psychiatric
     (hallucinations, vivid dreams). It’s important to watch for these
     side effects, as the medication may need adjustment. Swallowing
     can be a major problem for a person living with Parkinson’s so
     make sure medication is always accompanied by a glass of water.
     Residents should not break, crush or chew controlled-release
     tablets unless instructed to by their physician.

     Medication management is the most important part of controlling
     Parkinson’s symptoms. As the disease progresses, timing of the
     medications becomes ever more critical.

     Charting symptoms and side effects is recommended if you observe
     a change in the resident’s abilities.

                        "My face muscles don’t work
                        automatically anymore. I have
                        to tell myself to ‘smile’ or
                        else I look grouchy or
                        disinterested all the time. I
                        don’t always respond quickly
                        to what you’re asking. I don’t
                        have a hearing problem. My
                        thought processes have slowed
                        down so it takes me longer to
                        answer questions. So please
                        ask me how I’m feeling because
                        I still enjoy conversation and
                        your company."

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     What are a Parkinson’s resident’s main mobility problems?
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     As the disease progresses, there can be problems with balance and
     posture. However, exercise is important, so encourage the
     resident living with Parkinson’s to move around, especially when
     he/she is rested.

     Be aware that "freezing" - a sudden inability to move, especially
     when walking or getting out of a chair, can be dangerous and can
     cause a person with Parkinson’s to fall. Do not try to push or
     move the resident. Find out from the family or ask the resident
     what visual or sensory cue will get him/her moving again.

     You might consult with a physiotherapist for tips to help the
     resident overcome freezing episodes. One trick is to place your
     foot or an item on the floor in front of the person and ask them
     to step over it to get him/her moving again. Playing music or
     counting with a steady beat can also encourage movement in some
     people.

     Here are some suggestions you can offer a resident living with
     Parkinson’s to help him/her move around more easily and safely:

        * lift feet, heel first, to avoid shuffling and falls - a
          slight foot drag is common to Parkinson’s
        * avoid prolonged standing with feet too close together -
          could increase the risk for falls
        * use appropriate walking aids such as a cane or walker - if
          balance is a problem
        * keep hands free when walking - use shoulder straps, fanny
          packs or walker baskets
        * wait a minute before you first get out of bed or up from a
          chair - place feet directly under the knees and stand up
          firmly to overcome the pull of gravity
        * wear proper walking shoes - rubber or crepe-soled shoes are
          not recommended because they grip the floor and may cause
          tripping
        * avoid pivot turns - walk through turns slowly instead

     Another important thing to understand about Parkinson’s is that
     some residents can have "ON-OFF" episodes. "ON" describes ability
     to move when medication is working. "OFF" refers to inability to
     move or function because medication is not working. These may be
     unpredictable and are not always related to the timing of
     medication. They can immobilize a resident from minutes to hours.
     "ON-OFF" episodes are a characteristic of late stage Parkinson’s.
     The resident is not being stubborn - they have no control over
     these episodes.

     Residents with Parkinson’s might benefit from any programs you
     have that specifically address individual safety.

                                         "I worry constantly about
                                         falling and breaking bones. I
                                         want to keep mobile. When my
                                         medication is working, I can
                                         move around safely with a
                                         walker, hand rails and other
                                         aids."

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     What else can I do to make a difference in the life of a resident
     with Parkinson’s?
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        * ask the resident with Parkinson’s when it is best to give
          medication - with a meal or on an empty stomach or with a
          few crackers … this might reduce nausea or help with the
          absorption of the medication … medication given before a
          meal allows a Parkinson’s resident to eat without help,
          reduces spilling and the risk of choking, improves
          nutritional intake and socialization with other residents
        * encourage socialization - a resident with Parkinson’s often
          feels isolated … find ways to include him/her in the
          facility’s leisure recreation programs (talk to a recreation
          therapist, someone from pastoral care, or a visiting
          volunteer to help with this) … this could include providing
          a program such as Tai Chi - a form of exercise that aids
          flexibility and balance and promotes relaxation … exercise,
          especially walking and stretching, is essential therapy for
          someone with Parkinson’s
        * look for signs of depression - common for people living with
          Parkinson’s … this could include anxiety, anger, a change in
          personal habits, withdrawal … seek help from a social worker
          or someone from pastoral care if the condition persists
        * improve communication - encourage residents to sit upright,
          take a deep breath and “think loud or “think shout” when
          they speak…make sure the resident with Parkinson’s always
          has cold water to drink or chipped ice to suck on … this
          relaxes the muscles of the jaw and tongue … ask questions
          which require a simple ‘yes’ or ‘no’ … be patient - you will
          get an answer … if a speech therapist is available, he/she
          can offer practical communication tips … drooling can be a
          problem so remind the resident to swallow … encourage
          singing, as this helps to project the voice
        * always be sure the resident has taken Parkinson’s medication
          prior to a meal, to allow optimum nutritional intake, safe
          swallowing and mealtime pleasure
        * give the resident time to eat slowly - failure to swallow
          properly can lead to choking (a symptom of swallowing
          problems) … have the resident sit in an upright position
          when eating and remind him/her to swallow … consult with a
          dietician (who might recommend easy-to-swallow foods such as
          thickened drinks) ... special utensils or an anti-skid mat
          beneath the plate may help ... a spoon rather than a fork
          will make eating easier … ensure the resident has an iced
          drink (with a flexible straw) close at hand … frequent sips
          between bites of food will also aid swallowing … a rest
          period before a meal can help … constipation is very often a
          problem for most nursing home residents - especially with
          Parkinson’s - so the diet should include enough fluid and
          fibre ... report prolonged constipation to the treating
          physician
        * talk to the resident’s family/friends regularly - they can
          help provide insight into his/her personality and
          preferences … Parkinson’s can feel like a long, gradual
          sense of loss for residents and their loved ones so it is
          important to stay connected with those who understand … find
          out if family members are attending Parkinson’s support
          groups and ask them to pass along information to help you
          and the resident better understand and cope with the unique
          challenges of Parkinson’s


janet paterson: an akinetic rigid subtype, albeit primarily perky, parky
pd: 56-41-37 cd: 56-44-43 tel: 613-256-8340 email: [log in to unmask]
my newsletter: http://groups.yahoo.com/group/newvoicenews/
my website: http://www.geocities.com/janet313/

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