This is possibly the least discussed topic of all and for many of us, it is an absolute elephant looming large. Of all the articles I read, this is the one that is possibly the least covered.
I must state that personally, I am thankfully blessed. I have worked incredibly hard my whole career and am in a position where I can, to an extent anyway, cope financially. Nonetheless, it has had huge impact on my plan for the future and our financial situation and also causes me very significant ongoing stress and worry.
Although it is different for everyone based on individual circumstances, insurance coverage, and geography (e.g., National Health or individual plans), I know that it is a huge issue for many, if not everyone.
For some, it turns them from well-off to financially ‘just about ok’, and for others, it causes them to lurch towards real financial difficulties. Why and what can people do?
Challenges
Costs of Treatment: The most immediate impact is the high cost of day-to-day treatment. For example, I fund, with minor insurance contributions, on a monthly basis, 8-12 physio/acupuncture/deep tissue muscle therapy sessions, 8-12 personal trainer/yoga sessions, contributions to drugs, significant additional costs for my diet (nutrients, supplements, different meals), private consultations, and other costs. At times, I have also paid for speech therapy, sleep therapy, and CBT. These costs vary by country.
Additional Recommendations: Many people recommend additional options as ‘critical items,’ such as organic food, stem cell therapy, and multiple supplements, adding to the costs. With the greatest of respect to many of these advisors – these key items almost always come with a high price tag.
Current Income: Many people’s ability to maintain their current earnings is affected. Some have to stop, change work, or step back, leading to a loss of income and risking insurance coverage and pension payments.
Lost Future Income: The biggest impact for many is the loss of future earnings they had planned on. Personally, I imagined working for a long time and had banked on that in my financial projections. Now, I plan on a few more years of income, hoping to outperform the statistics. This raises questions about whether pension plans are sufficient for the long term.
Higher Future Costs: As PD advances, future healthcare costs will likely increase, leading to higher long-term care costs. This progressive degenerative disease often requires home assistance and other unexpected expenses.
Lack of Insurance: Once diagnosed, you face the ‘pre-existing condition’ challenge. Insurance premiums go up, and it’s too late to address a lack of effective coverage in areas like critical illness cover. Even travel insurance costs rise.
Paperwork: All of this comes with a lot of extra administration, which is time-consuming and stressful.
Stress and Worry
The impacts are huge, and more than the actual cost is the stress and pressure they put on the PD patient and their partner. It also affects the family, who may become financial supporters rather than recipients. This stress can snowball and directly impact the PD, creating a vicious cycle. I have certainly felt it, as have my wife and kids.
What Can We Do About It?
This is a major issue on everyone’s mind, and there is only so much mitigation that can be taken. Here are some options discussed with professionals:
Get Expert Advice on Your Finances: A financial expert gave me invaluable advice on improving my pension and disability insurance plans. I advise others to do the same. They can help you understand your current financial situation, identify potential risks, and suggest strategies to safeguard your future. One example I have personally had was a switch I was able to make to a plan without pre-existing conditions which made a huge impact.
Prioritize: Healthcare costs are necessary, but it’s important to prioritize as the cost of doing everything suggested is crippling. I have ruled out some treatments due to cost, although I would like to do them. Focus on treatments that provide the most benefit and consider alternative therapies that might be more affordable.
Know What Is Provided by the Health Service and the Government: In Israel, I found out that certain costs are covered by the HMO, such as physio, rehab (e.g., 6 weeks of rehab per year fully funded), and other therapy costs. Research what is available in your area and take full advantage of these services to reduce out-of-pocket expenses. On the other hand, in some countries, taking government schemes can actually impact other issues so advice can make a huge difference.
Budget: A difficult discussion is often needed to re-prioritize spending for PD. This may involve compromising on travel and lifestyle choices. Create a detailed budget that includes all medical and therapy costs, and look for areas where you can cut back. This might mean reducing discretionary spending or finding more cost-effective alternatives for non-essential items.
Options: For almost all the spend items there are a range of options open – personal trainers can be done in groups or by zoom classes, volunteer groups exist – there are always choices.
Investment Approach: PD may change your risk profile and the way you think about savings/pensions. It’s good to think this through with professionals. They can help you adjust your investment strategy to ensure it aligns with your new financial reality and long-term goals.
Speak with Your Peers: You are not alone. People in your geography have been through the same and can offer tips on rates of therapists, group activities, funded services, insurance specifics, and other ideas. Joining support groups or online communities can provide valuable insights and emotional support.
Stress Management: Most of us have financial stresses, with or without Parkinson’s and it is something we all have to learn to cope with. Learning to cope is crucial, whether through exercise, mindfulness, therapy, or planning. Developing a stress management plan can help you maintain your mental health and improve your overall well-being.
Awareness and Planning
I don’t have all the answers and am myself stressed about this issue. Awareness and sharing ideas will help, and planning is key. Quick response is important.
I apologize if this post stresses people—that is not the intent. It is an elephant we all face, and we will find a way to cope. Some of us need help. I welcome the discussion and am happy to add good ideas from others by way of comment in this blog and if you know of useful
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