There are two pet peeves of mine that I often hear at Parkinson’s support groups or Seminars. One is the constant reference of those individuals with PD in attendance as “patients.”

A Google search of the definition of the word patient is: a person receiving or registered to receive medical treatment. Then, follows a list of synonyms, many of them actually rather offensive: sick person, sufferer, victim, invalid.

Referring to a community member, who happens to have Parkinson’s disease as a “sufferer” does not sound very empowering to me, and unless you are in my clinic or the doctor’s office, you are not a patient, anymore than any other person in the group with heart disease, diabetes, or hypertension would be referred to as a patient in any other setting outside of the physician’s office or hospital.
Peeling of the Labels

We all accrue many labels over the course of a lifetime, and as a society, we have gradually replaced demeaning labels such as “crippled” with more acceptable labels such as “disabled”. When a label refers to a group of people, such as: “Parkies” or “Parkinsonians,” it may represent a group you have found yourself a member of by default or diagnosis. The labeling may cause others to overly focus on the visible manifestation of the disease while failing to connect to you, personally

My dear friend and blogger, Kate Kelsall, who is now deceased, wrote a poignant piece on this topic, and stated:

“When someone describes me only in terms of my medical diagnosis as having Parkinson’s, it doesn’t describe me as a person. The human element is overlooked, and I feel devalued. Too often, disability-related labels are used unnecessarily to describe a person. A disability is NOT the most important descriptor of any individual. Defining a person as though the disability comprises the entirety of the person often segregates and isolates the person and fails to recognize the humanness.”

Caretaker or Care Partner?

My other pet peeve is the use of the words caretaker or caregiver to refer to a spouse. Now this one may really feel to some readers as merely semantics. Neuropsychologist, Paul Short, first helped me understand and adopt this distinction into my own vocabulary and explains it simply as a caregiver gives care, and is usually a paid position such as nurse or nurses aid, while a care partner is a partner in care,” usually a spouse, significant other, or adult child.

Now, I realize that many people reading this who are helping to care for a spouse with Parkinson’s or other chronic condition may be devoting a great deal of their day to “taking care” of the other person. But, the shift to care partner encourages you to think of it as a partnership. Something you are in together, and taking care of your own needs remains as important as those needs of the person with PD. This can include hiring an outside person for a few hours a day or week, if you are concerned about falls or other issues while you are out. It means, continuing to go to your own exercise class or participating in your own hobbies. And, perhaps most importantly, it means preserving the primary relationship you have with your partner, whether it be husband, wife, parent, or significant other.

In Florida, where I live, many older people, typically my patient demographic, have limited family support as their children and grandchildren may live out of state. Consequently I often see the stress  and the breakdown of the spouses own health as they try to meet all the needs of their husband or wife with PD.

No spouse can be a 24/7 nurse for long and knowing when to ask for help, whether it’s a friend or neighbor to take over an occasional trip to the doctor or other task, or a paid caregiver, it can provide the time needed to care for oneself. Even seeking some counseling can be worthwhile, and provide you with an opportunity to discuss the changes affecting your relationship and receive some guidance for how to best take care of your own physical and emotional well-being.

May is National Speech-Language-Hearing Month.

I love words and the power of communication and that’s part of what I love about being a Speech-Language pathologist. The inability to communicate following a stroke or due to a neurological disease, can cause a loss of autonomy and decision making, and can fracture relationships. For all of us, communication is central to our lives, and the words we use can empower others or hurt others. They can incite hope and resilience or anger and despondency

“The inability to communicate may contribute to changing life roles as well as feelings of grief and loss for family members.”.

When I created Voice Aerobics® in 1999, the intent was to provide patients with guided speech and voice practice that could be used before, during, or after speech therapy. Please visit my website to learn more about  the Voice Aerobics family of products developed to be FUN and AFFORDABLE and designed to help individuals practice at home or wherever they go.

I have been serving people with speech, voice and swallowing problems for over 30 years, and despite the many changes and challenges in healthcare including reductions in insurance re-imbursement, my mission remains the same.

 

My Mission: To enlist individuals in their treatment, and help them express their personality & spirit through voice. To educate  and empower. Mary Spremulli, MA, CCC-SLP * FiTOUR® Group Exercise Instructor * Voice Aerobics® A Whole Body Approach to Voice Practice

Voice Aerobics the heART and Science of Voice Practice