If you have recently been diagnosed with Parkinson’s disease (PD), you will go through a myriad of mixed emotions, ranging from shock to despair to even disillusionment. It can be hard to accept the diagnosis as a fact, and the thought of a future with Parkinson’s can make you feel overwhelmed.
What is Parkinson’s Disease (PD)?
PD is a chronic, degenerative neurological disease that affects muscle movement. This happens when some of the nerve cells in the brain stop working. These nerve cells create a chemical messenger called dopamine, which helps transmit messages around the brain. When less dopamine is produced, those messages don’t get passed on as well. You may find yourself frequently facing joint stiffness, slowness, impaired balance and shaking.
While PD generally affects adults over the age of 60, more often among men than women, there are uncommon instances of early-onset PD as well. The disease begins slowly and will worsen over time.
A 2018 report found that at least 20,000 people in Malaysia live with Parkinson’s Disease, and this number is set to rise fivefold by 2040.
Dealing with Your Diagnosis
It can be confusing and challenging to come to terms with a diagnosis for a disease that seems so unfamiliar and scary. You may be aware of the common traits people describe Parkinson’s disease, which is the shivers or shaking, but beyond that, you know very little of it. Or, prior to this, you may know friends or relatives who are dealing with Parkinson’s disease, and you may have some knowledge as to how they manage their condition.
It is important to remain calm when you first receive the diagnosis. Slowly come to terms with it; you may not be able to take in all the information when you first find out about it, but that is perfectly fine. Speak to your doctor again sometime after the initial diagnosis. Take time to discuss the matter with your loved ones and see what can be done. When you see the doctor again, be sure to ask questions on what to expect, what can be done, and so forth.
It is also fine to seek a second opinion. Your diagnosis may be based on what the doctor finds during their medical examination of you; the initial diagnosis may not necessarily paint an accurate picture of your actual health. You may even consider a second opinion if you want to find a doctor you can trust. You will be seeing the doctor for a long time to manage your condition; it is recommended to find a doctor or medical team who understands what you need.
If you do want to pursue a second opinion, you should see a movement disorder specialist, who is an expert on Parkinson’s. Moreover, there are no specific tests that, on their own, detect Parkinson’s; generally, these tests help exclude other conditions that may show symptoms similar to Parkinson’s. Seeing a PD specialist will be helpful to accurately determine if you do have it.
Small Steps Ahead
At the same time, it is best to start early with planning for the road ahead. The research will be important to learn about Parkinson’s so that you and your loved ones know what to expect and find ways to manage it effectively and with little stress. The first few weeks will not go as you may hope, so don’t despair if you feel frustrated at first. Take it slowly but surely, and be sure to communicate how you feel and what you’re going through. Be honest with them about your doubts and fears, and let them know how they might help you manage your condition. Have a strong support system that will help with your physical, mental and emotional wellbeing.
It is also important not to overthink what could go wrong. Parkinson’s is a lot more manageable today thanks to medical breakthroughs. Every person with Parkinson’s goes through their life with varying degrees of unpredictability; some may have many good days, while others may face more complications than others. Seeing someone deal with advanced Parkinson’s is not a sign that it will happen to you.
Remember that small steps are crucial to keeping your condition at bay. Bad days will be unavoidable, so be open to change whenever it happens, and be adaptive to your circumstances. Accept that the bad times will come to pass and move onwards with your life.
Questions to Ask Your Doctor(s)
Before you see your doctor again, you may want some time to think about what you would like to ask regarding your diagnosis. Consider the following list of questions:
- What might be the cause of my diagnosis?
- Will there be a need for medical tests?
- How does the condition progress?
- What do I need to prepare for?
- What would be a good treatment plan for me?
- Will I need to consider long-term care for my condition?
- What will my family need to know to help?
- What side effects should I expect from treatment?
- What should I avoid taking, i.e. certain medications or foods?
- Can you recommend a support group for me and my family?
- Are there clinical trials I could participate in?
These should help you get started and may help inform you of other questions you might want to ask. Do not dwell on the negatives, but focus on where and how you can start your journey.
A Parkinson’s diagnosis can be life-changing and you deserve the best care as you navigate life with the condition. Engaging a caregiver not only encourages better management of the condition; it also helps build strong emotional support for you or a loved one.
To give your loved one the best care he/she deserves, we provide a free care consultation for you and your loved one, to ensure that they get a Care Professional that best suits their needs.
Getting Help from Others
Communication with family and friends is an essential component to managing your Parkinson’s. Building closeness with them can help you with overcoming stress and loneliness, find solace in their love for you, and may even mitigate the progression of Parkinson’s.
As Parkinson’s progresses, you may begin to find it difficult to communicate with your loved ones. Parkinson’s disease can affect how you communicate, and it has nothing to do with your education or intelligence. Muscle rigidity in your throat and chest can make it difficult to be heard. Meanwhile, internal tremors, stiff face and throat muscles, and even side effects from certain medications can cause slurring of words. It may make it difficult to express your emotions as well. These will become apparent as the condition advances.
As it goes on, you will also begin to lose control of your movements, and it could cause misunderstandings in how people perceive your actions. You will need to be ready for uncertainties.
Your PD will be a source of ongoing conversations, especially as it advances. Your family will be your primary caregivers, and it is important that they take part in your medical decisions. Having a family member with you during visits to the doctor can be insightful, as they may provide outside perspectives to how your condition is progressing. They may recognize a new symptom that has developed or point out changes that you may not have noticed. They may even have other questions to pose to your doctor on your treatment plan.
Their participation in your wellbeing is important so that they will know what to expect as PD progresses. They can help you with your own research, identifying legitimate sources and warning you of less-than-credible ones. By doing so, and being alert to how your condition changes and presents itself, can help you manage your symptoms and encourage your own independence simultaneously.
Speaking to your children, especially if they are still very young, can seem a little daunting. When talking about your condition, do not speak down to them; despite their age, children can be surprisingly mature on the subject of many topics. Be honest with your diagnosis and what it means; tell them it is not their fault (some children tend to assume it is their fault when a parent falls ill), and that you are still the same person they know. Answer their questions with these in mind.
Your family will slowly take on responsibilities that were once yours. If you were the primary breadwinner, they will find a job that can help with the family’s finances; if you were the homemaker, they will take up those responsibilities from you. Just as they are being patient and doing all they can to help, be patient with them too. If there may be any frustrations between one another, talk it out honestly but politely. See what you and your family can do to help each other out. Isolating yourself will not help your circumstances, only exacerbate them.
Make it a point not to let the condition change your family activities too much. Spend more time with them too, as tightening family bonds can do great things to your overall well being. Take up new hobbies that allow them to participate as well, such as painting, picture puzzle assembly, or photography. You may even find your symptoms much more manageable when you are feeling great, a known fact to help manage PD. If some activities start to feel strenuous or overwhelming, switch things up. Keep it going for as long as possible.
Being open-minded and able to adapt to how family dynamics change will be crucial. Talk about your concerns and find a way to reach a meaningful compromise or a beneficial solution. Think about other ways you and your family can help each other. Maybe counselling can help mediate interpersonal issues between one another. Maybe respite care can give your family some room to recharge and take time for themselves without worrying about your care. Whatever the decision may be, always keep communication lines open, through the thick and thin of it.
Communicating to Colleagues
Outside of your family, you may feel daunted about how you want to approach the subject with your colleagues at the office, or even with your manager, or your friends outside of your close circle. How would they react? Would it be a demoralizing experience?
The subject of disclosure is not an easy one to approach. For many people with PD, denial and fear were reasons why they did not tell other people about their diagnosis. They fear that it will alienate them from their peers and colleagues for being less capable because of PD.
The important thing to remember is that while you cannot control how they react to your condition, you can control how you respond to them, or how you feel about it. Not everyone may have empathy for your condition, and some may outright choose not to acknowledge the situation. Reassure your colleagues and employers that you can still contribute to your work and are open to accommodate changes that can help you continue working.
If need be, speak to your immediate supervisor and work out something beneficial for you and your company via its policies on employee benefits. You can even talk to your doctor and get a letter of support, outlining ways to make the most out of your time at work. As a precaution, look up ways to protect yourself and your rights; leaving your job should be the last resort, or if the PD has advanced that it hinders your ability to work.
Discuss with your family for suggestions as well; they may offer insights that you may not have thought about.
A common, and important, piece of advice for persons with PD is to stay active. There are many benefits to staying active:
- Improves flexibility, posture and balance
- Reduce sleeping issues
- Improves your mood and motivation
- Improves your energy levels
- Complements the effects of medication
Group exercises can also help with fostering social interactions with others. All these factors may help with slowing down PD’s progression. Consult your doctor beforehand to make sure you are in good physical condition to exercise. Keep it simple and slow at first, as rushing may only get you injured. Look for professional trainers who are familiar with PD-specific routines so that you can have an exercise plan that fits your needs.
A balanced diet is also part of PD management. While there are no specific diets that can help with PD, healthy eating can still help ease some of its symptoms. Maintain a full diet that meets your daily nutritional requirements, and have regular meals so you can reduce the urge to snack. Consume more vegetables, fruits, lean proteins, seafood and whole grains, and drink plenty of water to manage, among other things, constipation that may arise from advancing PD. While it is fine to occasionally indulge in your favourite foods, try to space out these moments or reserve them for special occasions instead.
PD may cause you to have a poor appetite, or medications you take might cause nausea or limit your food intake. Speak to your doctor about a way to handle these complications; you could stagger meals and medication times so as to prevent side effects from affecting your food intake. If you find it hard to eat solid food, consider a soft diet that supplements the nutrients you need.
Stick to regular sleeping hours so you do not feel exhausted the next day. It is best to spend some time each day doing various activities to keep you busy and in good shape physically, mentally and emotionally.
There will be new challenges that present themselves as PD advances over time. You may begin to have difficulty chewing or swallowing food; your motor coordination may begin to deteriorate, and you find yourself unable to do things you used to do. These are all unfortunate symptoms that will require new changes to adapt to, and for some, it may prove to be a very uncomfortable experience.
It is for this reason that you must plan ahead for the uncertainties that your PD diagnosis brings. Every day spent taking care of your health will go a long way in ensuring the severity of complications does not prevent you from doing things or retaining your independence. Always stay informed of your overall health with your care providers, and keep track of any changes that may arise. The earlier you can catch these changes, the sooner you can do something about it.
Treatment and Care Options in Malaysia
Medications used to treat PD are only to help manage its condition, as no cure has been developed yet. These medications may help substitute or increase dopamine levels to make up for your body’s dopamine deficiency. Dopamine cannot be given directly since it cannot enter your brain.
Generally, your medication regime may begin once your PD advances to the point that it interferes with your daily activities. Some medical professionals believe that much earlier initiation of medication, usually after receiving the diagnosis, could lead to better outcomes with managing its symptoms.
Levodopa (L-dopa) is the most effective medicine for managing PD. It is a natural chemical that passes into your brain and is converted to dopamine. Levodopa may be combined with another chemical, carbidopa, to help prevent dopamine conversion outside of the brain which could cause side effects like nausea. Levodopa doses usually start small, at the minimum recommended amount, to prevent side effects from occurring.
Levodopa is usually administered orally, although there are now inhaled and even infusions (requiring some minor surgery) available.
While levodopa treatment is very effective, its benefits may slowly wear off over time. While it is known to happen, it is due to the nature of the disease and not due to the long-term use of levodopa. This will require other medications to treat. However, symptoms such as imbalance, speech or swallowing difficulties and dementia are not caused by a dopamine deficiency and require other approaches to treat them effectively.
Dopamine agonists are another medication used to treat PD. While it is not as effective as levodopa to control slow muscle movement and muscle rigidity, it can still help manage PD, sometimes used in tandem with levodopa treatment. These medicines do not convert into dopamine but mimic the effects of dopamine in your brain. Dopamine agonists do present side effects of their own, including nausea, dizziness and sleeping problems, but maybe substituted for another that presents fewer or no side effects.
Some other medicines that you may encounter include:
- MAO B Inhibitors: these prolong the effects of dopamine in your brain
- Catechol O-methyltransferase: allow a larger amount of levodopa to reach the brain, raising dopamine levels
- Anticholinergic: help reduce tremor and muscle stiffness caused by PD
Your doctor will decide on which medication regimen works best for you. Make sure you speak to them if your medications cause you to experience debilitating/uncomfortable side effects.
If medications are not helping with managing your PD, you may consider other alternatives, including surgery.
The most prominent surgical treatment method is deep brain stimulation (DBS). DBS involves placing electrodes into a specific part of your brain, which is connected to a generator implanted in your chest near your collarbone. The electrodes deliver electrical impulses that block or change the abnormal activity that causes symptoms.
DBS is usually considered for those with advanced PD who have unstable levodopa responses. DBS can stabilize medication fluctuations, reduce or halt involuntary movements (dyskinesia), reduce tremors, reduce rigidity, and improve slowing of movement. However, it does not improve memory, hallucinations, depression, or other non-movement symptoms caused by PD.
Before considering DBS, your doctor may conduct an “L-dopa challenge.” What this does is assess how beneficial DBS will be to managing your PD. This will require the overnight withdrawal of PD medications for 12 hours to assess your state when off medications. An assessment of your condition after a levodopa dose (sometimes 50 per cent higher than your usual dose) will also be done. The results can determine if DBS can actually help manage your PD effectively.
While promising, DBS does not cure PD nor prevent it from progressing. It is also based on stringent requirements that are dependent on your doctor’s diagnosis of your current PD symptoms. There are also complications that can arise from the surgical procedure, including infection or complications with the DBS equipment.
Parkinson’s Support Groups
In Malaysia, the Malaysian Parkinson’s Disease Association (MPDA) is the country’s first PD support group that was established in 1994. They provide educational and emotional support for those with Parkinson’s, as well as their families, and facilitate activities and seminars to help them learn about PD and live healthy, stress-free lives in spite of their condition.
The Michael J. Fox Foundation for Parkinson’s Research also has its own online network for persons with PD, the Parkinson’s Buddy Network. It allows you to make meaningful connections, engage in important dialogue, find PD resources and build long-lasting relationships with others from around the world. The community comprises both persons with Parkinson’s, caregivers and medical professionals.
Living a Full Life with Parkinson’s
Many people with PD have found peace and meaning in their circumstances. Some have found themselves able to do more despite their condition, picking up new hobbies or finding valuable insights into their life. It helps to keep the following tenets in mind:
- There is no single solution to managing PD
- Build a strong support system
- Adapt your treatment plan to changing circumstances
- Stay engaged on treatment options
- Stay hopeful and celebrate little victories
- Be prepared for the future
Of course, acceptance of your condition will not happen overnight. The journey will be a very bumpy one. So long as you are honest with yourself and others, seek support from those closest to you, and be patient and open to change, you will eventually find peace of mind without even realizing it. Take each day as it comes, and infuse yourself with hope and joy.
Outside of this guide, there are many resources that you can also look into to help you learn more about Parkinson’s, see how others with PD manage their condition, and detailed facts on treatment options. The Michael J. Fox Foundation for Parkinson’s Research has a number of useful guides, as does the Parkinson’s Foundation on frequently asked questions on PD.
If you need specialised care support for Parkinson’s disease, our Care Pros can help. Reach out to our Care Advisors at 016 299 2188 or fill out the form below.
American Parkinson Disease Association. (2019). Parkinson’s Disease Handbook. Retrieved 8 September 2021 from https://www.apdaparkinson.org/wp-content/uploads/2017/02/APDA1703_Basic-Handbook-D5V4-4web.pdf
Cleveland Clinic. (2020). Parkinson’s disease. Retrieved 8 September 2021 from https://my.clevelandclinic.org/health/diseases/8525-parkinsons-disease-an-overview
Davis Phinney Foundation for Parkinson’s. (2017). A Primer on Parkinson’s for the Newly Diagnosed. Retrieved 9 September 2021 from https://davisphinneyfoundation.org/a-primer-on-parkinsons-for-the-newly-diagnosed/
European Parkinson’s Disease Association. (2018). Just diagnosed. Retrieved 8 September 2021 from https://www.epda.eu.com/about-parkinsons/diagnosis/just-diagnosed/
European Parkinson’s Disease Association. (n.d.). Relationships and Parkinson’s. Retrieved 8 September 2021 from https://www.epda.eu.com/living-well/wellbeing/relationships-and-communication/relationships-and-parkinson-s/
Hassandarvish, M. (2019). Malaysian Parkinson’s disease patients expected to rise fivefold — here’s what you need to know. Retrieved 8 September 2021 from https://www.malaymail.com/news/life/2019/04/11/malaysian-parkinsons-disease-patients-expected-to-rise-fivefold-heres-what/1742188
Johns Hopkins Medicine. (n.d.). Newly Diagnosed with Parkinson’s Disease: 7 Things to Do Now. Retrieved 8 September 2021 from https://www.hopkinsmedicine.org/health/conditions-and-diseases/parkinsons-disease/newly-diagnosed-with-parkinsons-disease-7-things-to-do-now
Malaysian Parkinson’s Disease Association. (2011). Parkinson’s Disease: Information for People Living with Parkinson’s. Retrieved 10 September 2021 from https://mpda.org.my/booklet.pdf
Mayo Clinic. (2019). Steve Grinnell: Staying Ahead of Parkinson’s Disease One Ping Pong Game at a Time. Retrieved 8 September 2021 from https://intheloop.mayoclinic.org/2019/11/19/steve-grinnell-staying-ahead-of-parkinsons-disease-one-ping-pong-game-at-a-time/?mc_id=us&utm_source=newsnetwork&utm_medium=l&utm_content=content&utm_campaign=mayoclinic&geo=national&placementsite=enterprise&cauid=100721
Mayo Clinic. (2020). Parkinson’s disease: Diagnosis and treatment. Retrieved 8 September 2021 from https://www.mayoclinic.org/diseases-conditions/parkinsons-disease/diagnosis-treatment/drc-20376062
MIMS. (n.d.). Parkinson’s Disease & Parkinson’s Disease Dementia. Retrieved 10 September 2021 from https://specialty.mims.com/parkinson%27s%20disease%20-and-%20parkinson%27s%20disease%20dementia/treatment
Movement Disorders Council. (2012). 2012 Consensus Guidelines for the Treatment of Parkinson’s Disease. Retrieved 10 September 2021 from https://www.neuro.org.my/assets/guideline/2013PD_08012013.pdf
MyHEALTH Kementerian Kesihatan Malaysia. (2015). Medicines and Parkinsons’ disease. Retrieved 11 September 2021 from http://www.myhealth.gov.my/en/medicines-and-parkinsons-disease/
Parkinson’s Foundation. (2012). Diagnosis Parkinson’s disease: You are not alone. Retrieved 8 September 2021 from http://parkinson.org/sites/default/files/attachments/PDF_Diagnosis_2.5__12_Final.pdf
Parkinson’s Foundation. (2016). Parkinson’s Disease Q&A, Seventh Edition. Retrieved 9 September 2021 from http://parkinson.org/sites/default/files/attachments/pdf-qa.pdf
Parkinson’s Foundation. (n.d.). Get Moving! Retrieved 10 September 2021 from https://www.parkinson.org/Living-with-Parkinsons/Managing-Parkinsons/Advice-for-the-Newly-Diagnosed/Get-Moving
Parkinson’s Foundation. (n.d.). I’ve Got Parkinson’s… Now What? Retrieved 8 September 2021 from https://www.parkinson.org/Living-with-Parkinsons/Managing-Parkinsons/Advice-for-the-Newly-Diagnosed/Ive-Got-Parkinsons-Now-What
Parkinson’s Foundation. (n.d.). Keeping the Lines of Communication Open. Retrieved 9 September 2021 from https://www.parkinson.org/Living-with-Parkinsons/Managing-Parkinsons/Advice-for-the-Newly-Diagnosed/Keeping-the-Lines-of-Communication-Open
Parkinson’s Foundation. (n.d.). When & How Should I Talk to My Employer and My Coworkers? Retrieved 10 September 2021 from https://www.parkinson.org/Living-with-Parkinsons/Managing-Parkinsons/Advice-for-the-Newly-Diagnosed/When-and-How-Should-I-Tell-My-Employer
Parkinson’s Foundation. (n.d.). Your Symptoms are Unique to You. Retrieved 9 September 2021 from https://www.parkinson.org/Living-with-Parkinsons/Managing-Parkinsons/Advice-for-the-Newly-Diagnosed/Your-Symptoms-Are-Unique-to-You
Parkinson’s Life. (2019). ‘People believe a witch doctor will cure them’. Retrieved 10 September 2021 from https://parkinsonslife.eu/malaysia-parkinsons-sara-lew/
Parkinson’s Life. (2021). 3 tips for managing a Parkinson’s disease diagnosis. Retrieved 9 September 2021 from https://parkinsonslife.eu/3-tips-for-managing-a-parkinsons-disease-diagnosis/
Parkinson’s UK. (n.d.). Newly diagnosed with Parkinson’s. Retrieved 8 September 2021 from https://www.parkinsons.org.uk/information-and-support/newly-diagnosed-parkinsons
The Michael J. Fox Foundation for Parkinson’s Research. (n.d.). Care Partners. Retrieved 9 September 2021 from https://www.michaeljfox.org/news/care-partners
The Michael J. Fox Foundation for Parkinson’s Research. (n.d.). If I Knew Then What I Knew Now: The Michael J. Fox Foundation Patient Council’s Guide for People Newly Diagnosed with Parkinson’s. Retrieved 8 September 2021 from https://www.michaeljfox.org/sites/default/files/media/document/Guide%20for%20newly%20diagnosed_6.30.21.pdf
The Michael J. Fox Foundation for Parkinson’s Research. (n.d.). Parkinson’s 101. Retrieved 8 September 2021 from https://www.michaeljfox.org/parkinsons-101
The Michael J. Fox Foundation for Parkinson’s Research. (n.d.). Parkinson’s 360°. Retrieved 10 September 2021 from https://www.michaeljfox.org/sites/default/files/media/document/PD_360_Singles_07.01.21%20%282%29.pdf
The Michael J. Fox Foundation for Parkinson’s Research. (n.d.). You, Your Loved One and Parkinson’s Disease. Retrieved 9 September 2021 from https://www.michaeljfox.org/sites/default/files/media/document/MJFF_CAREGIVING.pdf
WebMD. (2021). 10 Questions to Ask Your Doctor About Parkinson’s Disease. Retrieved 10 September 2021 from https://www.webmd.com/parkinsons-disease/guide/more-questions-doctor-parkinsons