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Seek support promptly after receiving diagnosis

Q:  I went to the doctor with my older sister the other day. She was scared to go alone as she was afraid of bad news. She had fallen twice and had noticed her voice was softer and she had to strain sometimes to be heard. She was frightened that these issues were symptomatic of a larger health concern.

Unfortunately she was right. The doctor confirmed her fears that she had Parkinson’s disease. He explained to her this is a progressive nervous disorder that affects movement. In the beginning symptoms may be barely noticeable, and it was a good thing she came in after falling to see what was wrong. He stressed it is important for her to keep track of any physical changes regardless of how subtle they may be.

Symptoms can be numerous and not every person with the diagnosis will display all the symptoms especially in the early stages. The symptoms he listed included stiffness or slowing of movement, speech changes (voice may become very soft or sound hoarse), flat facial expressions, stooped posture, arms no longer swing as the person walks, and changes in urinary or bowel functions. As the disease progresses the person may experience delusions or hallucinations which can be frightening not only personally but to caregivers as well. He said there was no cure but he was encouraged she could start early treatment. Medications and therapy may show improvement and slow the progress of her disease.

This was a lot of information for my sister to digest and she is overwhelmed with her diagnosis and prognosis for the future. What can I do to help her manage this sudden and difficult news? How do we prepare for her future?

A:  Receiving a diagnosis of a serious condition is never easy and even more so when there is currently no known cure. Your sister is going to need both emotional and physical support in the days and years to come. Try to reassure her the situation is not totally hopeless. The actor Michael Fox is a prime example of someone who has been living with the disease for 28 years and continues to find meaning in his life.

It would be very helpful to find a local Parkinson’s disease support group. This would be of benefit to both your sister and anyone who is going to assume a caregiver role. Meeting other individuals with the disease may not only be educational (learning from each other) but will also strengthen your sister’s social support system. The Parkinson’s Foundation Helpline 1-800-473-4636 and the American Parkinson Disease Association 1-800-223-2732 are places to call when you are looking for a specific resource or need some guidance when a new issue occurs.

The Chronic Disease Self-Management Program would be an excellent option for your sister to consider. The six-week sessions would provide her with the tools to deal with her diagnosis and increase her confidence in moving forward. Information about upcoming sessions and locations can be found by calling 978-946-1211 or going online at www.healthyliving4me.org.

Your sister’s physician will be a key to referrals for specialized services whether that be for physical therapy, occupational therapy, speech therapy, nursing, home health aides, or a movement specialist.

 

Are you struggling caring for an older adult or having difficulty locating resources? Our staff is available for a no-cost consultation, set up at your convenience, to help guide you through your caregiving experience. For more details or to schedule an appointment, please call 800-892-0890.

Do you have a question? We encourage inquiries and comments from our readers. Please direct your correspondence to ageinfo@esmv.org or Elder Services of the Merrimack Valley, Inc., Age Information Department, 280 Merrimack Street, Suite 400, Lawrence, MA 01843. Joan Hatem-Roy is the Chief Executive Officer of Elder Services.