Not Alone: A Daughter and Her Dad Battle Parkinson’s Together

When Kelly’s dad was diagnosed with Parkinson’s disease 20 years ago, she researched the disease and the best treatment options for him. Little did she know that she too would be diagnosed with the same devastating disease four years later, at the age of 29!

At first, Kelly couldn’t believe what was happening to her. The first symptom she noticed was a tremor in her right hand, which was misdiagnosed by her primary care doctor as carpal tunnel syndrome. About 6 months later, the tremor started in her right leg, and she began to doubt the original diagnosis. She made an appointment with a movement disorder specialist, and never in her wildest dreams did she expect to leave that appointment with a diagnosis of Parkinson’s disease at such a young age.

After starting medications, Kelly’s symptoms were well controlled. She didn’t feel the need tell anyone except her immediate family. Over the course of the next 10 years, she told very few people and kept most the things that were changing with her body and mind to herself. It seemed easier for Kelly to hide the disease and get on with her life.

Kelly was fortunate that her Parkinson’s had progressed slowly, and medications helped, although she still needed some therapy. Her father was not as lucky. He experienced sleep and vision problems, tremors, and stiffness associated with the disease. From Kelly’s research and personal experience, she learned that in many cases, doctors did not offer physical therapy or mental health therapy unless asked. She didn’t want her dad’s treatment to suffer because he didn’t know the questions to ask or because he couldn’t articulate his symptoms, so she stepped in and helped him.

Helping Each Other

Kelly and her dad sat down with one another before appointments with doctors and therapists, and wrote down symptoms they were experiencing, and advocated for each other. Kelly’s dad once told her that he would give anything for her not to have Parkinson’s, but he’s glad that he has someone to help him through his Parkinson’s journey. Kelly feels the same way when it comes to her dad.

Dealing with Parkinson’s in a Positive Way

Kelly’s mantra when it comes to Parkinson’s is, “it will never get the best of me” and it hasn’t. She tries to keep a positive attitude around her father, as well. To help others, she started two young onset support groups that helped her to find friends who understand her – and to help others to live better with PD. Kelly has also learned how to better advocate for herself, her father, and has met others with Parkinson’s who have become her lifelong friends.

Kelly quotes Davis Phinney, Olympic bronze medalist and founder of the Davis Phinney Foundation in saying, “We can’t control that we have Parkinson’s, but we can control how we choose to live with it.”

These are some ways that you can be positive if you or a loved one has Parkinson’s

· Surround yourself with caring, loving, and nurturing family members, friends, and neighbors.

· Try to keep a positive attitude. Your symptoms may be changing and the effectiveness of medications may not be what they used to be. But, try and look for the silver lining.

· Keep your sense of humor! Try to put a humorous spin on everyday observations and situations. For example, if you use a wheelchair, you might look at it this way: You always have a place to sit and a pair of shoes lasts much longer. Remember, laughter is a great stress reducer.

· Treat depression if you have it: If you experience any combination of symptoms such as loss of appetite, feelings of sadness, difficulty sleeping, loss of your sense of humor, a sense of hopelessness, or just feel down in the dumps — you may be suffering from clinical depression. Please tell your doctor and get help.

· Consider attending a local PD support group, no matter what your age or stage. Support group members understand your struggles because they face or have faced the same challenges.

· Find an advocate who will help you get appropriate care. This will give you the peace of mind that you have someone on your side who has your best interests in mind.

Advocating for a Loved One with Parkinson’s

No one understands the ins and outs of Parkinson’s disease better than those who live with it every day. In the case of Kelly and her father, they have each other. In most cases, an advocate can be helpful for a person with Parkinson’s. The role of patient advocate can be assumed by various people, or a combination of them, as follows:

· Person hired by the family: Sometimes the patient and family hire a patient advocate from a registry, such as the AdvoConnection. In this case the advocate may be a nurse, a doctor, or a trained and experienced caregiver who helps the patient while hospitalized or at home. The advocate obtains medical records, asks questions, keeps notes, helps patients make their own difficult medical decisions, and reviews and negotiates medical bills.

· Close friend or family member who is not paid for their service: This advocate provides many of the same services as a paid advocate, but often is learning on the job. Occasionally they have a background in medicine and use that knowledge to great success helping the patient ask the right questions and get appropriate care at the correct time.

· Official staff member in a facility: He or she can operate as a patient navigator whose job is to help the patient understand the processes and options in care within the facility.

Do you have a loved one with Parkinson’s or another debilitating disease?

If you or a loved one is nearing the need for long-term care, or is already receiving long-term care or if you have not done Long-Term Care Planning, Estate Planning or Incapacity Planning (or had your Planning documents reviewed in the past several years), please call us at one of the numbers below to make an appointment for an initial consultation, or sign up for one of our upcoming seminars:

Fairfax Elder Law: 703-691-1888

Fredericksburg Elder Law: 540-479-1435

Rockville Elder Law: 301-519-8041

DC Elder Law: 202-587-2797