The Parkinson's disease Support Center

The Journey:
Just Found Out
Dealing With It
Recover & Thrive
Worst Case

Facing the Initial Impact of Parkinson's disease

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Parkinson's Disease

Every person is unique, but when you face a diagnosis like Parkinson’s disease, you are never alone.  Countless men, women and children have faced the exact same diagnosis and have survived and thrived.  The following guide is designed to help you navigate your journey with the best information and resources that helped other survivors when they faced the same challenge.  

TSC has scoured the Internet and assembled links to the very best resources about Parkinson's disease: articles, blogs, forums and tools that can help you make better decisions and take action to overcome the range of physical, emotional and other challenges that you face.

As you’ll see, we always welcome your ideas and suggestions to make this Parkinson’s Disease Guide even more helpful to survivors like you.    

 

JUST FOUND OUT 

Survivors Say: Best Resources for Parkinson’s Disease

  • National Parkinson Foundation The website lists information about Parkinson's-related research, patient care, education, and information about the disease.
  • HealingWell An online resource center with articles, forums and chat rooms covering almost all aspects of Parkinson’s.
  • Doctor's Guide The Patient Resources section offers the latest news and information about Parkinson’s disease.

The Big Picture

    
Parkinson’s disease was first diagnosed by Dr. James Parkinson in 1817. It is a degenerative disorder of the central nervous system that results in the disruption of motor skills and speech, and causes uncontrolled shaking.  Parkinson's usually begins around age 60, but it can start earlier, and it is more common in men than in women. While many forms of Parkinson’s are thought to be genetic in nature, the disease can also be cause by blows to the head, toxicity to certain drugs and other medical conditions. A variety of medicines sometimes help symptoms dramatically, but the disease is progressive and almost always gets worse with the passage of time.

There can be several different versions of Parkinson’s disease, and both the symptoms and progression of the disease can vary from person to person. Therefore, it is vital that if you are diagnosed, you ask as many questions as you can of medical professionals, and learn as much as possible about the disease and its treatments.

Parkinson's Disease Symptoms

Your World


Because Parkinson’s affects different individuals differently – and because it is also a progressive disease – it is important that you understand what type and what stage your Parkinson’s is in to allow you to better plan your course of treatments.

University of Maryland Medical Center: Signs and Symptoms

Because Parkinson’s affects different people differently, its signs and symptoms are sometimes misdiagnosed.  Therefore, it is important to get a second opinion. 
While there is no known cure for Parkinson’s, there are treatments that can help reduce the number and the severity of the attacks you have, and research into this disease is progressing at a rapid pace.

How to Explain Parkinson's to Friends and Family


After being diagnosed with a chronic and progressive neurological disease such as Parkinson’s, it's understandable for patients to experience a flood of raw emotions. It's important not only for you to talk with your loved ones and make contact with support groups, but also that you receive the proper advice and come to grips with the new reality of your life.

Cedars-Sinai: Coping with the Emotional Aspects of Parkinson's Disease

When you are diagnosed with Parkinson’s, it can be difficult to know just what to tell family and friends. As difficult as this diagnosis is for you to deal with, it is also difficult on those who love you.

DisabilityInTheFamily.com: Talking with Kids About Parkinson's Disease This information is helpful for helping you talk about Parkinson's with family members of all ages

Parkinson’s Disease Myths

Dealing With Parkinson's disease

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Information and Recommended Links for Survivors


Coping with Parkinson’s isn’t the same as coping with non-progressive illnesses. It’s important to keep your mind and body active when battling Parkinson’s, and essential that both you and your family develop strong skills to cope with the situation.

Types of Treatment


Recently, serious advances have been made in the management of Parkinson's disease. While there is no cure there are treatments that can modify the progress of the disease. Because it is a progressive disease, the way it manifests in a person also changes with time. For this reason, there is no one treatment that works for everyone,  or that even works for anyone all the time. Learn what some of your alternatives are:

Alternative Treatments


Discuss alternative medical treatments with your health care providers to see if any of them make sense in your particular case.

Holistic Online: Parkinson's Disease Infocenter

Money and Work Matters

Parkinson’s disease can require you to plan for both long and short-term costs of medication, home adaptations, insurance and other healthcare related needs. 

Resources to Find Doctors


The progressive nature of Parkinson’s disease creates a challenge because the disease affects different people in different ways. For this reason, not all people will need to see the same types of doctors. Therefore, it is important that you follow the advice of your primary care provider and see the recommended specialists.  The Parkinson’s Disease Foundation has several excellent recommendations for ways to find the doctors that are right for you in your battle against this illness:.

The Emotional Roller Coaster


How do you deal with the fact that you are living with a progressive illness such as Parkinson’s?  Many patients find it difficult to think about at all, while others obsess about it. For many people, the emotional aspects of this disease are worse than the physical ones.  What’s important is that you continue living your life as normally as possible, participating in the same daily activities you've always enjoyed.

Support groups are also important. Keep phone numbers of your support team handy at all times. Talking with people in the same situation as you will help you develop a positive mental attitude, which will go a long way in smoothing out the emotional roller coaster you’re on.

Books Survivors Recommend

Communicating with Your Healthcare Providers

Do you find that your mind simply shuts down when your doctor talks to you about your condition?  You’re not alone. Many patients can’t recall much detail about a visit to their doctor even moments after walking out of his or her office. There’s a solution: Bring a friend or family member with you. Have that person ask questions and take notes.

Write down any questions you have before going to your appointment, and don’t be afraid to ask your healthcare provider to repeat things or explain them in different terms that you can better understand. Don't be afraid to ask any questions you feel you need answered, even if you may be scared of the answer.

Creating a support circle

  • Set up your TSC Survivor Profile
  • Join support groups of other survivors or set up your own
  • Interact and provide updates on your profile or our forums

Information and Recommended Links for Co-Survivors

How you can help

  • Assist your friend or family member with their day-to-day duties and  chores. Strive to find a balance between helping and allowing him to care for himself. You do not want to increase his stress or make him feel like he's becoming a burden. 
  • Preserve your friend or family member's daily activities. It's normal to feel protective but excluding her from activities or decisions will contribute to her feeling of helplessness and being a victim.
  • Involve your friend or family member with others. Don't focus exclusively on his disease and treatment plan when interacting with him. Talk to him about your life, and make plans to visit friends and loved ones. A survivor involved with others has a better chance of avoiding feelings of abandonment.
Parkinson's Educator: Parkinson's Training for Caregivers

What to say    

  • "I will support your decision in whichever treatment option you choose and which doctors and hospitals you go to."
  • "I heard about your diagnosis from…Do you want to talk about it?"
  • "I care about you very much, and I am here to help in any way I can."

What not to say

  • "Don't worry, we'll find a way to make this all go away."
  • "We'll go to every hospital and spend as much money as it will take to get you well."
  • "You won't have to lift a finger."

Things you can do for a survivor every day


Offering day-to-day support is a great gift to give a family member or friend with Parkinson’s disease. If the patient is a family member, help out with chores or other duties she may have fallen behind on. If the survivor isn't a family member, help out the patient's family when they are away at hospitals or hotels by picking up the mail or newspaper, making meals, going grocery shopping, etc.

How to build a support network

  • Set up your TSC Co-Survivor Profile
  • Create a support group for your friend or family member.
  • Interact and provide updates

Recover & Thrive

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There is no known cure for Parkinson’s disease, but there are new treatments being developed almost weekly which are helping more and more people with the disease live their lives almost symptom-free for years at a time. Assess and share with others how you feel emotionally, mentally and spiritually. Telling your story and sharing your experiences helps you to put your thoughts and feelings into perspective, and they can also provide hope to others who are going through a similar journey themselves.Read and listen to these seven uplifting and emotionally-encouraging stories of Parkinson’s disease patients:

New York Times: Patient Voices - Parkinson's Disease

Give Back


What helped you while you were dealing with the diagnosis, undergoing treatment and coming to terms with your condition? Take a look back at your journey and share with others what helped you and what you wished you would have known/done. You can create a profile, reach out to other survivors, join support circles or share your story by following the links at TheSurvivorsClub.org. Check out some of the best charities for supporting Parkinson’s disease research or offering support to survivors:

Worst Case

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What can you do when your Parkinson’s has progressed too far for treatments to be effective? Many patients and families find they are unprepared when the worst-case happens. If you find out that your disease has progressed to the point that treatment is no longer effective, it's important to understand how to deal with the reality.
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Famous Parkinson's disease Survivors

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