Parkinson’s disease is currently incurable, but research is advancing. Examples of other diseases give hope that we will overcome this one as well. Choose the right strategy and tactics, hold on, and reinforcements will arrive.
Parkinson’s disease (PD) is neurodegenerative disease , which is still considered incurable, but! there are many incurable diseases in the world, it’s important to slow down the progression, maintain quality of life, and perhaps you will wait for a new revolutionary treatment method
There are many such examples in history. In 2013, a medication appeared Sovaldi (Rachel E Barenie, 2020) in more than 90% of cases, completely curing hepatitis C, which was previously incurable and led to liver cancer. Antiretroviral therapy allows patients with HIV to live full lives by suppressing the virus to undetectable levels and preventing the development of AIDS (WebMD). Melanoma, which people feared greatly due to its spread throughout the body, is now effectively treated with ipilimumab, harnessing the body’s immune system against the tumor (Matthew Mansh, 2011)
Just think, there was a time when there was no levodopa, and it was almost impossible to help patients. Then this dopamine precursor appeared, and patients began to live longer and their quality of life improved. The effect of levodopa weakened over time, and by then, deep brain stimulation arrived ( DBS), it has allowed patients to extend their quality of life, reduce medication doses, and improve their lives. Treatment of Parkinson’s disease with focused ultrasound was approved recently, less than 10 years ago, for the tremor-dominant form in 2018 (), for Parkinson’s disease in 2021 (Fusfoundation, 2021). Now this method is available to patients in Russia and allows for non-invasive elimination of tremor and rigidity. By removing stiffness and shaking, doctors can now reduce the dose of levodopa and its side effects.
What will happen next?
If we can hold out long enough, it is very likely that a new discovery will emerge, allowing for the reversal of the disease or even a complete cure.
In recent years, scientists have come closer to developing methods capable of stopping or even reversing the degeneration process in Parkinson’s disease (we have a separate article on this and a news section).
“When a cure for Parkinson’s disease is found — and it will be found — it will happen thanks to all of us working together ” — Michael J. Fox
Choose Your Winning Strategy
It’s important to understand what exactly victory means to you?
- Maybe your great-granddaughter is planning a wedding and you want to accompany her triumphantly?
- Maybe a great-grandchild is planned, and you dream of sharing your life secrets with them?
- Or live to see the moment when new treatment methods allow for an improved quality of life or even cure the disease?
- Find joy in the little things every day and share it with loved ones?
- Achieve success in a new hobby that will inspire me and my loved ones?
- Spend more time with friends and family to stay connected?
- Continue to marvel at the world and, observing your successes, believe in the possibility of new discoveries and treatments that will change life for the better?
- Find out something that scientists don’t know yet, see the discovery of something incredible?
- Raise the flag of fighting against the disease, help those like you by showing them your example of victory?
- Become independent in everyday tasks for as long as possible?
- Help others facing similar challenges by sharing your experience?
- Maintain a positive attitude and faith in a better future?
- Create works of art or write to express your feelings?
- Receive recognition for your achievements and efforts in fighting the disease?
- Achieve the rights of people with Parkinson’s disease?
- Find your love?
“What keeps me going are goals. ” — Muhammad Ali
Analyze the situation
1. Study the enemy
Read as much as possible about your condition on the internet.
2. Explore yourself
Studying your illness and yourself is difficult without an education. Therefore, we will involve an expert—a doctor.
Find a doctor who not only prescribes medication but understands your values, helps you achieve your goals, and is ready to guide you to your chosen victory.
Remember!
1. Uses and knows current scientific research, not just clichés from clinical guidelines.
2. Thinks critically and has extensive experience applying this knowledge to various, especially complex, patients.
3. Understands your values and can apply exceptions to the standard considering your values.
Tell the doctor your goal and analyze your situation and possibilities together.
Evaluate Your Resources
Keep in mind that you should treat this not as expenses, but as investments for the future.
For example, you invested a certain amount in treatment, but returned to a more productive state and received much more in return.
Keep in mind, besides money, you may be helped by:
1. Your contributions to society.
2. Your services to friends and acquaintances in the past.
3. Your experience with illness, which is useful to others.
4. The efforts you put into your children may return to you through their help.
5. Your time, which you can dedicate to others.
6. You can also receive support from:
- your knowledge and personal experience in fighting the disease and understanding its characteristics,
- support from family, friends, and community, both emotionally and practically,
- Your ability to cope with difficulties and maintain a positive attitude
- motivations and aspirations to improve quality of life and the desire to fight the disease,
- volunteer activities, because participation in support groups and organizations promotes bonding with people and exchanging experiences,
- creative abilities, as the ability to use art, music, or other forms of self-expression can help improve emotional well-being,
- adaptation skills and the ability to find new ways to handle everyday tasks,
- support from specialists, doctors, psychologists, and therapists, they can help in managing symptoms,
- opportunities to make time for rest, hobbies, and connecting with loved ones,
- kindness, the ability to empathize and help others, as it brings satisfaction and joy,
- participation in support groups or forums where you can share experiences and receive advice,
- use of technologies and applications for monitoring condition and obtaining information about the disease,
- support and strengthening of family ties through joint activities and celebrations,
- participation in religious or spiritual practices that can provide comfort and support
“With art, I correct myself and infect normal people.. ” — Salvador Dalí
Choose allies and those interested in improving your condition
Here is You found yourself a good doctor.
Now get support from friends and family.
Do not refuse help from your children.
Sometimes adult sons and daughters do not feel that you need help because sometimes children perceive their parents as stronger and smarter until their weakness becomes clearly noticeable. Personally, for me, my dad was always the strongest and bravest. When he got sick, I felt that this suddenly was not the case, it was an existential worldview-changing experience. So don’t wait for the children to see it, ask for help without fear for your pride.
Ask for help clearly and explicitly, and the children will gladly thank you for all your efforts when they were little.
Join communities and socialize.
And your greatest ally is yourself!
Develop a plan
Create a plan with your doctor and your allies, family, and friends.
Draw your vision board, it will inspire you to move forward.
You need to use all opportunities:
- lifestyle ,
- diet ,
- physical activity,
- Exercises ,
- treatment by the best neurologists,
- minimally invasive surgical methods
to slow the progression of the disease and hold on until the next breakthrough in treatment, then the next one, and so on, we hope to maintain the quality of life and increase its duration.
Consider the risks and minimize them
For example, arrange a safe home environment
Decide on the signal SOS about assistance
Observe the situation continuously and learn!
Remember that the world is changing, new treatment methods are emerging, and your condition may change.
Be prepared for changes and adjustments in strategy in response to new circumstances.
1. Keep up with medical news with us.
2. Keep a journal.
3. Use devices to monitor your condition.
4. Focus on the positive, note the good.
4. Be grateful for what you have now and what you have achieved.
“Gratitude makes optimism resilient. If you are grateful for the opportunities you have, for what you are given to do at work, for existing opportunities, you are optimistic. If you can find these moments, I always feel that if you flip a coin 100 times, it will still land heads up. ” — Michael J. Fox
Communicate
It can be difficult with Parkinson’s disease to get up and make yourself go. But when you find yourself among people, they help you become more active. Dopamine, which is so lacking in Parkinson’s disease, is released in response to communication and support from others
Think about a positive distant future!
Return to the goals you set. Believe in yourself and move forward!
Think about the smallest things you would like to change today,
about the small steps you could easily change today,
that you will change today.
and… act.
Every day, little by little, improve without stopping, and in a year you will see how much you can achieve for your victory.
If we can hold out long enough, it is very likely that a new discovery will come along, offering the possibility of reversing the disease or even a complete cure.
In recent years, scientists have come closer to developing methods capable of stopping or even reversing the degeneration process. Currently, new revolutionary treatment methods are being developed for the following treatment tasks:
1. Stop cell death: gene and immune therapies to stop cell death, which causes the progression of Parkinson’s disease. Some are already being tested on volunteers (https://www.nature.com/articles/s41591-024-03270-6).
2. Restore or regenerate cells. Recently in China, differentiated dopamine-producing cells were transplanted into a human (https://www.sciencedirect.com/science/article/pii/S209592732300720X).
3. Replace lost function (in 2021 in Nature) a case of implanting a neuroprosthesis in a 62-year-old person, allowing them to walk, has been published https://www.nature.com/articles/s41591-023-02584-1).
4. We see the improvement of existing methods and medications (levodopa can now be administered with special devices, more effective combinations of existing drugs are being created). In the last 5 years, the MRgFUS technique has been developed and approved for Parkinson’s disease, initially for tremor, and later for dyskinesias. We can now treat tremor and rigidity surgically without any incisions
With the advent of artificial intelligence, research developments have accelerated significantly, and the epidemic has prompted faster registration of new drugs.
The question of whether a cure for Parkinson’s disease will appear in the coming years depends on several factors:
- Will the effectiveness of new methods be proven in clinical trials?
- Will these methods receive regulatory approval FDA, EMA and others)?
- Will they be available to patients on a large scale?
Note that the 2020 epidemic showed that drugs and vaccines can be developed much faster by using modern technologies and establishing cooperation between scientists, companies, and governments. In the last 5 years, this has led to accelerated research, simplified regulations for new drugs, and the creation of more accessible and effective treatments, resulting in real breakthroughs in medicine.
How did the pandemic accelerate biotechnology?
- The development of vaccines and drugs has become faster thanks to new approaches.
- The use of computers, artificial intelligence, and automation has simplified research.
- Scientists, companies, and governments have begun to collaborate more closely.
- Regulators have simplified and accelerated the testing of new drugs.
- Scientists have begun studying viruses from different perspectives, combining methods.
- The development of drugs for the treatment of long-term consequences has begun COVID-19.
- Strengthened efforts to make medications accessible to everyone.
- Routine tasks, such as data collection, have been delegated to machines to focus on what matters.
- Increased investments in biotechnology and new technologies, such as CRISPR.
- More attention is being given to creating personalized medicines for specific individuals.
What has recently emerged in the treatment of Parkinson’s disease and what awaits us in the future, read in our separate article about the present and future of Parkinson’s disease treatment
Despite what is written in textbooks about the late stages of Parkinson’s disease, there are many encouraging examples that make our future uncertain in a positive way .
I’ll repeat once more, you need to use all the possibilities:
- lifestyle ,
- diet ,
- physical activity,
- Exercises ,
- treatment by the best neurologists,
- minimally invasive surgical methods
to slow the progression of the disease and hold on until the next breakthrough in treatment, then another breakthrough, and so on, we hope to maintain quality of life and increase its duration.
No one knows how far we will go, but if we try, we will reach something, and our journey will be meaningful.
I sincerely wish you to write a book many years from now about how you fought and overcame Parkinson’s disease with your perseverance and emerging innovations.