Parkinson's Lifestyle Management

The Doctor says The Diagnosis is Parkinson’s disease

by | May 21, 2024 | Archives, Living with Parkinson's | 37 comments

Wow, how will I deal with a chronic neurological illness?  You are going to experience a myriad of feelings and reactions to these gut-wrenching words, “You have Parkinson’s Disease,” and this is a diagnosis that is not going away. The stark reality of Parkinson’s is the myriad of health conditions as it presents different and challenging adjustments for you as a caregiver, your spouse- the patient, family members, and friends.  My life just got turned upside down. What am I going to do?

The word that best comes to mind is “Overwhelmed,” with feelings of emotional numbness. You are probably a little disoriented and fragmented at first. These emotions will probably be recurring and part of life as you, the individual with Parkinson’s, and your family travel through this journey. Not only do you now have to deal with this diagnosis, but also the reactions from family and friends. The important thing to remember is the reactions and emotions of the person who has Parkinson’s.

The person with Parkinson’s will develop a unique personality, as will the spouse/care partner, which is the reasonable human response to a situation that has now become part of your life.  These are some responses to the Parkinson’s partner of being overprotective; one can do it better than me syndrome.  Denial of the situation, ignoring the progression of the disease, and explaining or making excuses for the apparent symptoms and physical changes caused by the disease.  The dynamites of the relationships with family and friends could change.  What once was independence could now become interdependence for both the spouse care/partner and the PWP (Person with Parkinson’s).

The female care/partner needs to be aware of this and not be surprised by society’s view, which expects the wife to assume this role without fanfare. When the husband or male is the care/partner, society seems to give great accolades, giving recognition, support, and affirmation to the husband as care/partner. This is a tough duty for either the male or female care/partner, each with unique demands, expectations, needs, and rewards.

As the stages of PD progress, the degree of stress increases, straining relationships, emotions, health, and attitude of the primary care/partner, the person with PD, family, and friends. In the early stages, stages 1, 2, and 3 of PD, these symptoms and displays of stress are usually somewhat low. As the symptoms of PD increase bilaterally, the incidents of stress-related problems rise.

As the disease progresses to the later stages of the disability, the stress and demands become much more significant on the care/partner.  These are not limited to economic issues, lack of resources, feelings of being manipulated, and mismatched expectations.  During this progress to the later stages of PD, the daily average caregiving has probably doubled in the mid-stages and will likely triple in the advanced stages.  These results in a decline of care/partner quality of life, depression, and a feeling of desperation as the ability to control has diminished, and the only thing predictable is there is no predictability.

Let’s begin talking about caregiving and the stages of Parkinson’s.

37 Comments

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