Parkinson's Resource

Parkinson’s Resource

March 2016

For further information: Neurologist Nurse 0448881669 Infoline: 1800 644 189 [email protected] http://www.parkinsonsnsw.org.au/

Translating and interpreting services can be arranged to assist with information in this brochure by calling the telephone interpreter service (TIS) on 13 14 50

This project is supported by Neurological Nurse, Shoalhaven Parkinson, NSW Parkinson, and Shoalhaven City Council Information correct at time of printing, subject to change without notice

Index

What is Parkinson’s? 5 Is it Parkinson’s? 5 Don't assume it's Parkinson’s 6 What can be done to help? 6 Know the 10 signs for early stage Parkinson 7 Carer 11 Becoming a carer 11 Caring for someone who has Parkinson’s 12 Carers Allowance 12 Challenges for carers 13 Emotional Support 13 Relationships 14 Family Friends 15 Keeping in touch 15 Looking after your health 15 Taking time out 16 Caring for the carer 17 Support groups 17 Carer Survival Tips 17 Respite 19 Daily Living 20 Activities of daily living 20 What are activities of daily Living? 20 What are adaptive aids? 21

Communication Tips 23-29 Verbal Communications plus Strategies and Treatment Options Non Verbal Communications plus Strategies and Treatment Options Swallowing and Parkinson’s Plus Strategies and Treatment Options Driving 30 How can I make my life better with Parkinson’s? 31 Legal Issues 32 Planning for the future 33 A Letter from a person with Parkinson’s 34

Services 36 Assessment for Care Packages / Residential Care 36 Carer Groups 36 Counselling 36 Education 38 Exercise programs 38 Information and resources 39 Neurological Nurse/Neurologist 39 Respite Service 39 Social support 40 Support Groups 41 Transport 42

Parkinson friendly Community 42 What is a Parkinson’s friendly community? Why do we need to be Parkinson’s friendly? Accessible -Toilets 43 Accessible Toilet list 44 User friendly Venues 51

What is Parkinson?

Parkinson’s is a progressive neurological condition that affects people from all walks of life. It is quite common, with approximately 80,000 Australians living with Parkinson’s. The average age of diagnosis is 65 years, however younger people can be diagnosed with Parkinson’s too. This is referred to as Young Onset Parkinson’s.

The provisional medical diagnosis is based on symptoms because there is no definitive medical test or radiological procedure which diagnosis Parkinson’s The diagnosis criteria is composed of four cardinal symptoms which are:  Tremor  Bradykinesia  Muscle rigidity  postural instability

There are associated non motor symptoms that impact on a person with Parkinson such as speech problems, constipation, fatigue and depression.

Is it Parkinson’s? The defining features of Parkinson’s disease are a variable combination of slowness of movement, muscle rigidity and resting tremor. Sometimes the onset of Parkinson’s Disease is characterised by vague, non-specific symptoms such as fatigue or localised muscle pain (e.g. the shoulder) making early diagnosis very difficult. People should be aware that other complications can also develop with this disease.

Other early symptoms of Parkinson’s Disease can include mild depression, restlessness or a softer voice. No two people will experience the disease in exactly the same way. The nature, severity and impact of symptoms can vary markedly.

Don't assume it's Parkinson’s

Just because you have a tremor, does not mean you have Parkinson’s disease. Likewise not all patients with Parkinson’s have tremors further complicating matters.

There are typical symptoms and signs that characterise this neurodegenerative disorder but presentation is often variable and fairly unique from one person to another. In general the most common tremor disorders are Essential Tremor and Parkinson’s Disease.

There are some distinguishing features but early in the course of each condition they can be difficult to differentiate.

What can be done to help?

Parkinson’s NSW offers a range of services and support that can help PWPs and their families come to terms with diagnosis. Meeting and talking to other people who are going through or have been through similar experiences can be particularly useful.

No-one has to deal with Parkinson’s disease alone. We offer information sessions, an information line, counselling, access to local support groups, and a range of resources including a video for those people newly diagnosed. Contact us for further information.

Know the 10 signs for early detection

1. Have you noticed a slight What is normal? shaking or tremor in your Shaking can be finger, thumb, hand, chin normal after lots of Tremor or or lip? Does your leg exercise, if you Shaking. shake when you sit down have been injured, or relax? Twitching or or could be caused shaking of limbs is a by common early sign of Parkinson’s disease.

2. Has your handwriting What is normal? suddenly gotten much Sometimes writing smaller than in it was in can change as you the past? You may notice get older, if you Small the way you write words have stiff hands or handwriting on a page has changed, fingers or poor such as letter sizes are vision, but this smaller and the words happens over time are crowded together. A and not suddenly. sudden change in handwriting is often a sign of Parkinson’s disease.

3. Have you noticed you no What is normal? longer smell or taste Your sense of certain foods very well? smell can be If you seem to have more changed by a cold, Loss of smell trouble smelling/tasting flu or a stuffy /taste foods like bananas, dill nose, but it should pickles or liquorice, you come back after should ask your doctor you are better. about Parkinson’s disease

4. Do you thrash around in What is normal? bed or kick and punch It is normal for while you are deeply everyone to have a Trouble asleep? You might notice night when they sleeping that you started falling ‘toss and turn’ out of bed while asleep. instead of Sometimes, your spouse sleeping. will notice, or will want to move to another bed. Sudden movements during sleep may be a sign of Parkinson’s disease.

5. Do you feel stiff in your What is normal? body, arms or legs? If you have injured Sometimes stiffness your arm or Trouble moving goes away as you move. shoulder, you may or walking If it does not, it can be a not be able to use sign of Parkinson’s it as well until it is disease. You might healed or another notice that your arms illness like arthritis don’t swing when you might cause the walk, or maybe other same symptom. people have said you look stiff. An early sign might be stiffness or pain in your shoulder or hips. People sometimes say their feet seem ‘stuck to the floor.’

6. Do you have trouble What is normal? moving your bowels If you do not have without straining every enough water or Constipation day? Straining to move fibre in your body, your bowels can be an it can cause early sign of Parkinson’s problems in the disease and you should bathroom. Also talk to your doctor. some medicine will cause constipation too. If there is no other reason such as diet or medicine that would cause you to have trouble moving your bowels, you should speak with your doctor.

7. Have other people told What is normal? A you that your voice is chest cold or other very soft when you speak virus can cause in a normal tone, or that your voice to sound you sound hoarse? If different but you A soft or low there has been a change should go back to voice in your voice you should sounding the same see your doctor about when you get over whether it could be your cough or cold Parkinson’s disease. Sometimes you might think other people are losing their hearing, when really you are speaking more softly.

8. Have you been told that What is normal? you have a serious, Some medicines Masked face depressed or mad look can cause you to on your face more often, have the same type even when you are not in of serious or a bad mood? This staring look, but serious looking face is you would go back called masking. Also, if to the way you you or other people were after you notice that you have a stopped the blank stare or do not medication. blink your eyes very often, you should ask your doctor about Parkinson’s disease.

9. Do you notice that you What is normal? often feel dizzy when you Everyone has had stand up out of a chair? a time when they Dizziness or Feeling dizzy or fainting stood up and felt fainting can be signs of low blood dizzy, but if it pressure and can be happens on a linked to Parkinson’s regular basis you disease. should see your doctor. 10. Are you not standing up What is normal? as straight as you used If you have pain to? If you or your family from an injury or if Stooping or or friends notice that you you are sick, it Hunching over seem to be stooping, might cause you to leaning or slouching stand crookedly. when you stand, it could Also, a problem be a sign of Parkinson’s with your bones disease. can make you hunch over

Carer

Becoming a Carer

A carer is a person who provides ongoing care or assistance to another person who has a disability, a chronic illness or a mental illness, or who is frail and needs assistance in carrying out everyday tasks. Carers may receive income support but are not employed to provide care. Carers are usually family members or relatives but they may be friends or neighbours.

A carer can provide care from two hours a week to 24 hours a day, seven days a week.

As things gradually change and the condition progresses, your lives are gradually changing. The person with Parkinson’s finds it harder to do everyday motor tasks such as, slicing bread, turning over in bed, taking things down from the top shelf. They may decide to stop driving. They may need help taking a shower or going to the toilet. Your mutual partnership is slowly moving to a more dependent relationship and one day you realise you have become a carer.

You are now doing tasks the person with Parkinson’s once managed for themselves and decisions on social, financial and family outings fall more on your shoulders. Tasks can include organising visits to friends, selecting items while shopping, identifying the correct person to contact for financial matters, selecting suitable clothing for the day’s activities, and completing physical tasks which require advanced manual dexterity.

Caring for someone with Parkinson’s

Not everyone with Parkinson’s has the same symptoms and they don’t appear in a particular order, progress at the same speed or in the same way. Many people find that how the condition affects them can change from day to day, and even from hour to hour.

Because of this, comparing the progression of Parkinson’s in the person you care for with others may not be helpful. Someone newly diagnosed with Parkinson’s may not need any practical help, but it can be important for them to have someone to talk to, for emotional support.

As time goes by and Parkinson’s symptoms develop, the person you care for may rely on you more for support. Because of this, it’s important to know how to get the support you need with your caring role

Carer’s allowances

Carers may be eligible for government benefits such as the Carer’s Allowance which is free of income or assets tests and is not taxable. Call Centrelink on 13 2717 to find out about your eligibility and to obtain the relevant application forms for this or similar allowances.

Challenges for Carers

The changing nature of Parkinson’s symptoms makes caregiving a challenging experience. Every person with Parkinson’s is affected differently by the condition, which means that every carer’s experience will differ. Being a carer is very rewarding, but it can also be quite stressful.

It is important that the person with Parkinson’s maintains a sense of control. It is good if they can decide when to undertake a major change, such as giving up driving. Try to avoid saying ‘you must or you must not’.

Emotional support

Parkinson’s is a life-changing illness. It impacts on everyone close to the person with Parkinson’s. You may feel overwhelmed by the rapid changes and the increasing needs of the person you care for.

All kinds of conflicting emotions may arise for carers. You may experience:  Feeling guilty because you do not want to be a carer or because your partner has the disorder and you do not  Denying that your partner has Parkinson’s or that it is affecting them  Anger about having to look after the person with Parkinson’s, or because Parkinson’s has taken your life away  Fear as to the severe disabilities that may happen to the person with Parkinson’s in the later stages of the condition  Happiness in being able to spend time caring for the person with Parkinson’s  Being over-stressed by this demanding illness and close to physical and emotional exhaustion  Sadness to see your loved one suffering.

All of these emotions are completely normal. Here are some ways to manage them:  Recognise how you are feeling  Understand that it is OK to feel this way  Learn how to release negative feelings  Focus your feelings on positive behaviour  Talk about how you are feeling  Get help for depression  Laugh a lot  Learn how to relax  Be open to the caring and support of others.

Relationships

You may find that your relationships with people change over time as you slowly take on more of the carer’s role. The person with Parkinson’s is physically less able to participate, and their energy swings may make them less willing to plan activities.

Being alert to the feelings of the person with Parkinson’s and encouraging those to join in activities that affirm their self- assurance will be beneficial to your relationship. This may not always be easy but keep trying.

Sharing your feelings with someone you trust can help you to cope better and make others around you more aware of your needs. Each person should feel safe to express their needs and to have their feelings considered and accepted.

Counselling is a good option if you need to talk to someone confidentially. Counsellors will assist you in a variety of ways including managing stress, identifying coping skills and obtaining emotional support. Carers associations in each state offer counselling services at little or no cost to carers. Contact your state carers association about the services they offer.

Family and friends

One way to cope with the stresses of being a carer is to have a good support network. Friends, family and colleagues can all contribute to your role as a carer. Trying to meet all the needs of the person with Parkinson’s can cut both of you off from others. You may end up feeling isolated and alone. So try to find people to help you every day.

Keeping in touch

Resolve to keep in touch with friends and family. Although it may take some effort to organise, meet up for a coffee, a chat or a movie every week. Use the phone and email. Invite friends over to share hobbies or set up a working bee for a big household or gardening task.

Looking after your health

Caring for a person with Parkinson’s demands physical strength and stamina. If you are not in good health, caring for the person with Parkinson’s will become harder to manage. It is common for carers to neglect themselves in their dedication to helping the person with Parkinson’s.

It is as important to take care of yourself as it is to take care of the person with Parkinson’s. Considering your own needs can be difficult. Carers are often vulnerable to stress-related illnesses and feel guilty if they take time out for themselves.

Tips for keeping healthy include:  Going out and participating in enjoyable activities  Making time to exercise regularly. This will increase your energy levels and give you a break from your daily routine  Eating regular healthy meals  Taking adequate sleep and rest – exhaustion can add to stress  Talking to a physiotherapist, occupational therapist or your doctor for advice on how to lift and support the person with Parkinson’s.

Taking time out

Every carer needs time out to re-energise. Go for a walk, do some gardening, exercise or enjoy your special hobby. Activities like swimming, going to a gym or joining a sporting team are all beneficial. Exercise can improve physical health, increase energy levels and help clear the mind. Find time to relax, because being a carer can be demanding and stressful. Try meditation or Tai Chi.

Carer ‘burnout’ is a kind of emotional and physical exhaustion. It happens when carers try to shoulder all responsibility. To help avoid this, you need regular breaks from the person you are caring for. You will then return to them refreshed and able to impart new enthusiasm into the daily activities of your partnership. Encourage them to continue with exercises and hobbies, and meeting family and friends while you are away.

Caring for Carers

Your support networks

Carer support groups Being part of a support group can be helpful. Meeting people who are living with Parkinson’s is a good way to widen your support network. Talking together and sharing ideas and information can give you a great boost. You may find new ways of dealing with Parkinson’s. You and the person with Parkinson’s may be invited to participate in interesting research projects or to speak to student and community groups about the condition.

Not everyone wants to join a support group. Some resist the idea of ‘those sick people’. Others believe they can deal with their condition on their own. Some younger or recently diagnosed people with Parkinson’s, with mild symptoms, find it confronting to observe elderly people with Parkinson’s in a wheelchair or go-cart.

Usually this resistance wanes. Most people find inspiration and wisdom in fellow members of their support group. There are many types of support groups. Some are mainly older people; others are mostly younger, working people. Some groups emphasise social activities, some concentrate on aspects of Parkinson’s and others go for educational and attitudinal topics. To find a support group that suits you, contact the Parkinson’s association or carers association in your state.

Carer Survival Tips

Learn about available resources

Share your

feelings with

others

Respite care

Planned respite care offers some scheduled time out. You can take a break, knowing that the person with Parkinson’s is well looked after. Respite care allows you to have personal free time for a few hours a day or several weeks.

Respite options include:  In-home respite on a regular basis for a few hours a week, when a trained carer comes into your home  Day care centres through the HACC program  Planned residential respite care in a hostel or nursing home facility, while you take an extended break. Not everyone is eligible for residential respite so it is important to be assessed if this type of respite is sought

Planned ‘one-off’ carer respite periods which provide the carer with a break from the caring role. These are short-term and tailored to meet individual needs.

Daily Living

Activities of Daily Living

Activities of Daily Living: Practical Pointers for Parkinson Disease provides easy-to-use tips that will help you remain as independent as possible for as long as possible

What are activities of daily living?

Activities of daily living, often called ADL’s, include bathing, dressing, eating, sleeping, toileting, walking and moving about. These and other routines are what we normally do as part of our daily lives.

Practical Pointers for Parkinson Disease provides easy-to- use tips that will help you remain as independent as possible for as long as possible.

While this information is helpful, it is not intended to replace the services of a physical or occupational therapist.

What are adaptive aids?

Adaptive aids are items that can help you stay as independent as possible for as long as possible. These devices can make your daily life easier and safer, and improve your quality of life.

Bathroom Aids Dressing and Grooming Aids

Drinking Aids Eating Aids

Kitchen, Food reparation Cooking Aids

Other Household Aids Reading & Writing Aids http://www.maddak.com

Communication Tips

Verbal Communication

It is estimated that 50% of people with Parkinson (PWP) will develop speech changes due to changes in coordination and reduced activity of the muscles involved in speech mechanism. The most common changes experienced include: · Microphonia (reduced volume) · Monotone · Huskiness of voice · Festination (similar to stuttering) · Dysarthria (slurred speech) · Rapid speech pattern · Slow speech pattern

All of the above changes in speech will be challenging for PWP, family members and health professionals. Patience and understanding are essential.

Strategies and Treatment Options

 Give conscious attention to the volume and rate of speech  Take a deep breath before starting to speak in order to maintain volume to finish the sentence  Rehearse mentally what you wish to say  Reduce background noise if possible

The input of a speech pathologist experienced in Parkinson will be of benefit. Therapy option include the Lee Silverman Voice Treatment (LSVT) which primarily addresses microphonia and monotone.

This is an intensive course of treatment and is available in most Parkinson specific treatment facilities. Voice quality may become husky, breathy or strained and this is often due to “bowed vocal folds”. Speech therapy may assist.

In cases of festination a simple strategy is to remind the PWP to concentrate on the key word. In some cases the use of a pacing board may be useful.

Dysarthria may respond to speech therapy.

If increased rate of speech is a problem conscious attention on slowing the speech pattern in addition to the use of a pacing board can be helpful.

Slow speech pattern is not simply a speech problem but in fact originates from a slowing of thought process (bradyphrenia).

This is out of the control of PWP and may be misinterpreted as confusion or dementia. An attempt to hurry PWP in their thinking or interrupting them may result in “blocking” or “freezing” thoughts.

Telephone use may be challenging due to all of the above verbal changes in addition to the impact of tremor or dyskinesia (involuntary movement). It may be helpful to sit while using the phone and consider the use of a hands-free receiver.

Non-verbal Communication

Muscle rigidity, slowness of movement and the effect of Parkinson on automatic gestures and skills result in the more visible manifestations of the condition:  Masked-like expression  Reduced eye blink rate  Reduction in body language  Micrographia (reduced handwriting size) and tremor related changes

Strategies and Treatment Options

Facial exercises will help in maintaining flexibility of facial muscles. A conscious effort to smile and express emotions is essential to avoid misunderstanding of cognition or intellect.

Similarly, conscious attention to eye blinking will address the stare-like expression and maintain adequate eye lubrication. Parkinson affects all automatic repetitive skills and gestures leading to a gradual reduction in body language and subsequent immobility. This may be misinterpreted as intentional.

Prolonged periods of immobility (of lower limbs) may result in postural oedema (swelling).

Micrographia occurs in most cases and may be an early indicator of Pd. Cursive writing is a learned and automatic skill. With the development of Parkinson the handwriting becomes smaller, cramped and less legible as the person writes. The use of lined paper may address this problem.

Tremor may impact on handwriting, the use of a keyboard and mouse resulting in information technology challenges. Software is available to minimise these problems and input from an occupational therapist experienced in Parkinson may be of benefit in all aspects of written communication.

It is important to remember that each case of Parkinson is unique to the individual therefore there will be variations in communication changes. It is vital to allow the PWP adequate time to respond when engaged in conversation. There may be a tendency for partners, family members or carers to respond on behalf of the PWP which may add to the frustration already experienced.

However, there may be times when this is appropriate, with the consent of the PWP.

Open and honest communication regarding all areas of Parkinson will assist in coping with the impact of living with Parkinson’s.

Swallowing and Parkinson

Dysphagia (swallowing changes) related to Parkinson’s vary from slight to severe and can be embarrassing and challenging for people with Parkinson’s and family members. The severity of Parkinson’s does not always correlate with the severity of dysphagia.

This may present as:  Aspiration  Choking  Coughing  Delayed swallow  Sialorrhea (drooling)  Xerostomia (dry mouth)

Strategies and Treatment Options Aspiration may occur silently (without obvious symptoms) hence reoccurring chest infections may be the first indication that aspiration is occurring. A referral to a speech and swallowing therapist for a swallowing assessment is recommended and may result in the use of thickened fluids.

A video-fluoroscopy is a commonly used investigation to assess the efficiency of the swallow reflex.

Parkinson’s is a progressive neurological condition, which is characterised by both motor (movement) and non-motor symptoms.

While choking is uncommon in Parkinson’s, it is always a potential problem. Prevention is the key, therefore a review by a speech and swallowing therapist and the introduction of a modified diet will maximize safety. If choking occurs, first aid measures should be used. The first aid management of choking changes frequently, therefore maintaining up to date knowledge is recommended.

Coughing while drinking or eating may be an early sign that dysphagia is occurring. Taking smaller mouthfuls and swallowing each mouthful before taking the next may be of benefit. Referral to a speech and swallowing therapist is recommended.

Delayed swallow is due to gradual changes in muscle control in the mouth and throat. This results in difficulty in moving the food or liquids from the front of the mouth to the back of the throat. When drinking, the delayed swallow may result in the entry of liquid into the lungs.

The body may adjust to this occurrence, hence the term ‘silent aspiration’.

Correct posture is vital for safe swallowing. Maintaining a straight back if possible combined with a slightly forward head position is the safest position. Do not extend the neck backwards. Avoiding dual tasking such as eating and talking, or eating and reading, will assist with safety.

Approximately a litre of saliva is produced daily and this is swallowed automatically. However, in Parkinson’s the automatic mechanism and frequency is disrupted, resulting in sialorrhea. This may be one of the most troublesome symptoms of Parkinson’s due to its antisocial nature.

Apply conscious attention to swallowing before speaking or eating. Apply conscious attention to mouth closure. A waterproof pillow cover may be used overnight. Discuss treatment options with your treating specialist. A Botox injection into the salivary glands is a current mode of treatment.

Medications may be difficult to swallow due to their size. Taking a drink of water prior to the medication will lubricate a dry mouth and throat. Taking a medication in a small amount of yoghurt will assist with the swallowing mechanism. It is vital to check whether a medication can be crushed as this is contraindicated in slow release formulations.

If dysphagia presents as part of Parkinson’s symptoms a review by a speech and swallowing therapist is recommended. This can result in suggestions of a modified diet and thickened fluids. In some cases alternative means of feeding may be suggested. This can be via a Percutaneous Endoscopic Gastrostomy (PEG).

The ultimate decision regarding alternative feeding methods lies with the individual and is often addressed in making advanced health care directives.

Driving

Parkinson’s can affect the ability to self-evaluate. As a carer or partner, you may perceive the person’s driving skills differently than does the person with Parkinson’s. Talking about the issue of driving is important, and it can be helpful to speak with your doctor.

In the early stages of Parkinson’s, drivers often modify their driving habits, for example, by driving shorter distances and by avoiding peak hour traffic and night time driving.

However, as the condition progresses problems may develop which could result in impaired performance. These may include:  Reduced physical reaction time  Impaired problem solving  Fluctuations in physical symptoms  Tremor  Fatigue  Difficulty attending to dual/multiple tasks, for example, listening to the radio, negotiating traffic or conversing with passengers  Problems with concentration

On/off phenomenon.

How Can I Make My Life Better With Parkinson's Disease?

The most important step you can take is to seek help right from the beginning. Education and support will help you deal with challenges that lay ahead. Taking action early will enable you to understand and deal with the many effects of the disease. A counsellor or mental health care provider can design a treatment plan to meet your specific needs.

Strategies can be designed to help you regain a sense of control over your life and improve your quality of life. Other steps you can take include the following.  Find out as much as you can about the illness.  Talk to your friends and family about it. Don't isolate them. They will want to be involved in helping you.  Do things you enjoy.  Do not be afraid to ask your doctor, nurse, or other health care provider to repeat any instructions or medical terms that you don't understand or remember. They should always be available to answer your questions and address your concerns.  Make use of resources and support services offered by your hospital and in your community.  Learn to manage stress. This will help you to maintain a positive physical, emotional, and spiritual outlook on life. Being stressed out will only make the situation worse. You should try to organize a daily routine that will reduce stress, with down time for both you and your family members.

Legal issues

Although most people do not like to think about legal issues, now is the time to start to put your affairs in order. You may find that your spouse or partner is gradually less able to manage. Over time you will take on more of the role of a carer with increasing responsibility for legal and financial matters.

For peace of mind and a sense of security, there are two main legal matters to sort out. A will is a legal document which sets out the wishes of a person for the distribution of their property upon death. If you do not have a will, your assets are divided and distributed according to legislation set by government.  Power of Attorney and Enduring Power of Attorney are legal documents which give another person the authority to make financial and legal decisions on your behalf. They can only be drawn up while you can still sign your name and make decisions. An Enduring Power of Attorney remains valid if you become unable to make decisions but a Power of Attorney lapses at that point.  The person with Parkinson’s and the spouse or partner should both appoint an Enduring Power of Attorney. If anything happens to either of you, you would both have someone entrusted to manage your affairs.  If you are not familiar with legal matters, consider talking to a lawyer or financial adviser. There may be costs associated with these services. Legal Aid or a local community legal centre may be able to assist you at a reduced cost.

Planning for your future

Many people put off planning for their future, especially financial and legal matters. Planning ahead is always a good idea and even more important when you receive a diagnosis of Parkinson’s.

It is important to ask whether your savings and superannuation will be enough to support you both.

Here are some strategies to help you with this challenge:  Review your finances  Reduce unnecessary expenditure  Set up a budget  Check your health insurance.

In time, you will find new ways to define yourself. A major change in your life can provide the opportunity to develop new skills and interests.

A Letter to my friends

I have Parkinson's disease. It is not catching or hereditary. No one knows what causes it, but some of the dopamine cells in the brain begin to die at an accelerated rate. Everyone slowly loses some dopamine cells as they grow older. If the cells suddenly begin to die at a faster rate, Parkinson's disease develops. It is slowly progressive and usually occurs as people get older. Medicine can help. I'll take newer, stronger kinds over the years. Some make me sick and need lots of adjustment. Stick with me. I have good days and bad days.

Tremors You are expecting me to shake. Maybe I will, maybe I won't. Medicine today takes care of some of the tremors. If my hands, feet or head are shaky, ignore it. I will sit on my hand or put it in my pocket. Treat me as you always have. What is a little shakiness between friends?

My face You think you don't entertain me anymore because I am not grinning or laughing. If I appear to stare at you or have a wooden expression, that's the Parkinson's. I hear you, I have the same intelligence. It just isn't so easy to show facial expression. If swallowing is a problem I may drool. This bothers me, so we'll mop up.

Stiffness We are ready to go somewhere and as I get up, I can hardly move. Maybe my medicine is wearing off. This stiffness or rigidity is part of the Parkinson's. Let me take my time. Keep talking, I'll get there eventually. Trying to hurry me up won't help. I can't hurry. I must take my time. If I seem jerky as I start out, that's normal. It will lessen as I get moving.

Exercise I need to walk every day. I will do as much as I can. Encourage me to do a little more each day. Walk with me. Company makes walking fun. It may be a slow walk but I will get there. Remind me if I slump or stoop. I don't always know I am doing this. My stretching, bending, pushing exercises must be done every day. Help with them if you can.

My voice As my deeper tones disappear, you will notice my voice is getting higher and wispy. That's the Parkinson's. Listen to me. I know you can talk louder, faster, and finish my sentences for me. I hate that! Let me talk, get my thoughts together, and speak for myself. I'm still there. My mind is OK, because I am slow in movement, I talk more slowly too. I want to be part of the conversation. Let me speak.

Sleepiness I may complain that I can't sleep. If I wander in the middle of the night, that's the Parkinson's. It has nothing to with what I ate or how early I went to bed. I may nap during the day. Let me sleep when I can. I can't always control when I'm tired or feel like sleeping.

Emotions Sometimes I cry and appear to be upset and you think you have done something to hurt my feelings. Probably not. It is the Parkinson's. Keep talking to me, ignore my tears. I'll be OK in a few minutes. Patience, my friend, I need you. I'm the same person, I've just slowed down. It's not easy to talk about Parkinson's, but I'll try if you want me to. I need my friends. I want to continue to be part of life. Please remain my friend.

Services

Assessment for Care Packages and Residential Care

Aged Care Assessment Team (ACAT) 1300 792 755 Referral via Shoalhaven Local Health Network Access and Referral Centre Provide advice and assistance to older people wanting to remain in their own homes or need to move into aged care facilities.

Carers Group

Sussex Inlet Carer Connect 1800 052 222 Location: Sussex Inlet Neighbourhood Centre Time: 10am-12 noon When: 1st Friday of the month

Ulladulla Carer Support Group (02) 4455 5366 Location: Ulladulla Community Health Centre Time: 10.30am – 12.30pm When: Fourth Monday

Counselling

Counselling available via Medicare Program To access this service talk to your G.P.

Illawarra Shoalhaven Local Health District (02) 4232 0153 or 0457 796 744 Provide carer counselling and support service. Helpful tips for positive caring

Illawarra Shoalhaven Local District Carer Program (02) 4424 6357 Free counselling service 1300 792 755 Provides information education and support to carers

Your Time Carer Counselling (02) 4423 1018 Provide carer counselling, support and advocacy

Education

Commonwealth Carer Respite 1800 052 222 Offer 1 day Education sessions (for the carer only)

Illawarra Shoalhaven Local Health District (ISLHD) (02) 4232 0153 Offer 3 day education courses (for the carer only) Nowra and Milton

Exercises classes

Cardior Exercise Class Where: Huskisson Community Hall When: Tuesday Time: 11.30 am – 12

Where: North Nowra Community Centre When: Thursday Time: 1pm – 3pm (1 hour training, 1 hour chat or complete exercise)

Dancerise/Movement classes for people living with a Neurodegenerative Condition Where: Bomaderry Community Hall When: Tuesday Time: 11am – 12 pm Where: Huskisson Community Care When: Thursday Time: 12pm – 2pm

Information and resources

Parkinson Australia http://www.parkinsons.org.au/

Neurological Nurse

Neurologist Nurse 0448881669 Infoline: 1800 644 189 [email protected] http://www.parkinsonsnsw.org.au/

Respite Service

Southern Cross 1800 989 000 Respite is to provide an opportunity for the Carer to have a break while Southern Cross provides the care/service to the Care Recipient. Respite services include the tasks and duties that would normally be provided by the Carer in that time frame. There is no charge for this service.

Illawarra Carer Respite and Carelink Centre 1800 052 222 Support primary Carers to access respite and other services in the region including residential respite. Assist with support for primary carers short term emergency situations

Multicultural Communities Council of Illawarra (02) 4229 7566 Provide In home Respite for frail older people (65 and over) and people with a disability from Multicultural background.

Social support

Social Support / Neighbour Aid Neighbour Aid /Social Support have developed creative and flexible community based support services, primarily via the coordination of volunteers. To help frail aged and people with disabilities and their carers to live independently in their home and community with low level tasks and social support needs. Central Shoalhaven (02) 4443 3434 Nowra Neighbour Aid (02) 4421 5205

Southern Shoalhaven (02) 4455 2861 Social support affiliated with Southern Shoalhaven Meals on Wheels encompasses 3 fortnightly social groups, 4 special interest groups which meet monthly, home visits and accompanied outings.

These services are provided for eligible frail aged people, younger people with a disability and their carers.

Support Groups

Illawarra Shoalhaven Local District Carer Program (02) 4424 6357 Provides information education and support to carers Also has a free counselling service on 1300792755

Parkinson Support group Nowra This support group, in Nowra, is under the banner of the Parkinson NSW for people with Parkinson disease, other Neurological conditions, their carers, friends and family.

Where: Masonic Hall in Moss Street Nowra When: first Wednesday of the month

Coffee and Chat mornings Where: Peckish on the park When: third Thursday of the month Time: 10am – 12 noon

Carers Coffee and Chat with the Neurological nurse. Where: Ulladulla Community Centre When: First Thursday of the month Time: 10 am – 12 noon

Carer of people with Parkinson 0448881669 Where: Tea Club Berry St Nowra When: Every 3rd Monday Time: 10 am – 12 noon

Parkinson Support group Ulladulla 0448881669 Where: Ulladulla Community Health Centre When: 1st Thursday of the month Time: 10am to 12 noon

Transport

Shoalhaven Community Transport Services Nowra (02) 4423 6044 Ulladulla (02) 4454 0840 Aboriginal Community Transport Coordinator (02) 4423 6044 Shoalhaven Community Transport Service provides door to door transport to people living independently within the Shoalhaven area who are frail aged or have a disability, their carers, and people who are transport-disadvantaged.

Transport is delivered by trained, caring volunteers to medical appointments, hospitals, shopping trips, day respite, library visits, weekend outings and social activities, in modern, well maintained vehicles. Priority is given to medical and hospital transport. Transport is also provided to other areas including Sydney, Wollongong, Batemans Bay and Canberra. Contribution fees apply.

Taxi Vouchers offer another form of subsidised transport for eligible clients.

Parkinson Friendly Community

What is a Parkinson-friendly community?

A future where people living with Parkinson’s disease are actively enjoying life with their friends, families, neighbours, children and grandchildren with community support for as long as possible. Communities will embrace those living with Parkinson’s disease through increased understanding and acceptance.

Why do we need to be Parkinson friendly?

The majority of people with Parkinson live in the community. Often people feel socially isolated and wish that they had more opportunities to interact with people in the community and to participate in social or other activities. With the support of their employer, community, local businesses and organisations, neighbours, and friends and family members, people with Parkinson can continue to do many of the things they did before they received a diagnosis.

Accessible Toilets

These are M-Lak key accessible Keys can be obtained from Assured locksmith Nowra. Cost approx. $15 a key. These keys are universal across Australia. You require a letter from your GP just stating you need access to an accessible toilet which uses M-Lak key Symbol Key Accessible parking Accessible toilet unisex Female accessible toilet Male accessible toilet

Carers have identified using toilets in shopping centres and in public spaces as an issue. It is recommended for carers and the person with dementia use accessible toilets together when out and about. Provided is a list of the unisex accessible public amenities in the Shoalhaven.

Accessible Toilet List

Basin View - Boat Ramp, 6 Basin View Parade

Bendalong - Washerwomen Beach, 10 North Bendalong Road,

Berrara - Berrara Flats Reserve, 1 Berrara Road,

Berry - Alexandra Street, located near the intersection of Alexandra (west side) and Albert Street (south side)

Berry - Apex Park - 12 Prince Alfred Street,

Berry - Showground Agricultural Pavilion - Corner Victoria Street and Albany Street

Berry - Showground Grandstand - Albany Street

Berry - Showground North/East - 22 Alexandra Street

Bomaderry Train Station - Meroo Street,

Burrill Lake - Dolphin Point Road - 27 Dolphin Point Road,

Callalla Bay - Bicentennial Reserve, Southern end of Lackersteen Street

Callalla Bay - Boat Ramp, 42 Boorawine Street

Callalla Beach, 3 Parkes Crescent (opposite) Beach

Cambewarra Lookout, 182 Cambewarra Lookout Road Beaumont

Culburra Beach - Culburra Shopping Centre Reserve - 147A Prince Edward Avenue Culburra Beach, behind shops, northern end

Culburra Beach - East Crescent - 81 East Crescent,

Culburra Beach - Tilbury Cove - 206A Penguin Head Road,

Cunjurong Point, Ottawa Street

Cunjurong Point - York Street, Access via York Street

Currarong - Dolphin Reserve, 2 Piscator Avenue

Currarong - Boat Ramp, Eastern end of Warrain Cresent

Fisherman’s Paradise - Boat Ramp, 92A Anglers Parade

Greenwell Point - Swimming Pool - 120 Greenwell Point Road

Huskisson - Lady Denman Heritage Complex, 11 Dent Street

Huskisson - Moona Moona Creek, 24 Beach Street

Huskisson - Voyager Park, Currambene Street

Huskisson - White Sands Park, 14 Hawke Street

Hyams Beach – South, 100 Cyrus Street

Kangaroo Valley – 3 Broughton Street,

Kangaroo Valley – Showground, Moss Vale Road

Kioloa - Scerri Drive Boat Ramp, Scerri Drive

Kioloa Sports Field - 650 Murramarang Road,

Lake Conjola - Boat Ramp, 1A Lake Conjola Entrance Road

Lake Conjola - Tennis Courts, 53 Lake Conjola Entrance Road

Manyana - Inyadda Beach - 1A Sunset Strip,

Manyana - 1 The Bulwark, Manyana

Milton Showground - 106 Croobyar Road,

Milton CBD - 69 Princes Highway,

Mollymook Surf Club - 2A Mitchell Parade,

Narrawallee - 90 Matron Porter Drive,

North Nowra - Greys Beach - 31 Fairway Drive

Nowra - 17 Egan Lane

Nowra - Harry Sawkins Park - 3 McGrath Avenue

Nowra - Stewart Place - Stewart Place

Sanctuary Point - Francis Ryan Reserve, 2 Paradise Beach Road

Sanctuary Point - John Williams Reserve, 248 Sanctuary Point Road

Sanctuary Point - Palm Beach, 256A Greville Avenue

Sanctuary Point - Paradise Beach, 179 Walmer Avenue

Shoalhaven Heads - Curtis Reserve - 16 Celia Parade,

Shoalhaven Heads - River Entrance - Eastern end of River Road

Shoalhaven Heads - Vic Zealand Reserve - 111 Shoalhaven Heads Road

Shoalhaven Heads Wharf – Opposite 1 River Road, Car park entrance

South Durras - Corilla Street, Playground Reserve

St Georges Basin - Island Point Road Boat Ramp, 2A Island Point Road

St Georges Basin - Lachlan Crescent, 17 Lachlan Crescent

Sussex Inlet - Lions Park, 8 Edgewater Avenue

Swanhaven - Ski Beach Boat Ramp, The Springs Road,

Ulladulla, Apex Park - Princes Highway ‘Harbourside’

Ulladulla, Boree Street Car Park - 6 Boree Street,

Ulladulla, East Car Park - 85 South Street,

Ulladulla, Rotary Park - 12 Crescent Street,

Ulladulla, Top of the Town Car Park - 137 Princes Highway,

Vincentia – Blenheim Beach, 470 Elizabeth Drive

Vincentia - Burton Street Mall, Burton Street Mall

Vincentia - Plantation Point, 49 Plantation Point Parade

Woollamia - Boat Ramp, 54 Frank Lewis Way

Yalwal - Picnic Ground B, Yalwal Rd

User friendly Venues

Apex Park - Berry 12 Prince Alfred Street Berry, Corner Princes Highway

Bomaderry Bowling Club - (02) 4421 2733 154 Meroo Rd,

Buffet Fusion – Nowra Ex-Serviceman Club (02) 4423 6983 149 Junction St,

Callala RSL Country Club (02) 4446 5313 43 Callala Beach Rd, Callala Beach

Curtis Park Arboretum - Shoalhaven heads 0416 333 090 5/11 Celia Pl, Community garden with accessible toilets

Greenwell Point Bowling Club (02) 4447 1111 Greens Rd,

Greenwell Point - Water Frontage Greenwell Point Road

Huskisson RSL (02) 4441 5282 2/8 Currambene St,

Lady Denman Museum (02) 4441 5675 http://www.ladydenman.asn.au/ 4 Woollamia Rd, Huskisson NSW 2540

Nowra Bowling Club (02) 4421 2100 www.nowrabowls.com.au 40 Junction Street, Nowra NSW 2541

Pelican Rocks Café - Greenwell Point (02) 4447 1471 115 Greenwell Point Rd,

Shoalhaven Entertainment Centre Café 1300 788 503 http://shoalhavenentertainment.com.au/ 44 Bridge Rd, Nowra NSW 2541