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Guest Post: Fears of Living with Parkinson’s

Phil Horton (author) and Eileen O’Reilly (editor) are advocates for change in the Colorado Springs Parkinson’s Community. In the below article, they have written about a deeply emotional subject that is seldom discussed. They delight in finding subjects to explore that push boundaries. This is their second article on ParkinsonsDisease.net.

Almost everyone has unresolved fears or concerns. Left unaddressed, fears can be overwhelming and lead to action paralysis. In addition to fears shared by everyone, People with Parkinson’s (PWP) and their Care Partners often have unresolved fears about living with Parkinson’s. We recently conducted a survey on fears with a number of PWP and Care Partners.1

Top five fears shared by PWPs & their Care Partners

  1. Balance, Freezing & Falling
  2. Financial Concerns
  3. Cognitive Decline & Dementia
  4. Losing Care Partner/Family or PWP
  5. Losing Ability to Communicate

Conclusions

  • You are not alone. Fears are shared.
  • Fears are real in our minds but fears, for the majority of people with Parkinson’s and their care partners, represent a worst case scenario and not what may actually happen. Parkinson’s is a slowly progressing disease and most fears represent a fast progression or last stages of Parkinson’s.
  • There are steps that will keep most of us at or near our current stage of Parkinson’s and also are the first steps for dealing with any Parkinson’s fears:
    • Assemble a medical team.
    • Be medically compliant.
    • Be as educated as you can about Parkinson’s.
    • Increase level of physical fitness.
    • Keep your brain active.
    • Keep a positive attitude.
    • Maintain social networks and friendships.

For each fear, additional steps were identified.

Fear 1: Balance/Falling

  • Stay active. Balance is a use it or lose it proposition.
  • If you are a fall hazard, get an alert service including GPS locator & fall alert services.
  • Have your home evaluated for slip/fall risk.
  • Take a continuing series of cardio/strength classes and Parkinson’s specific classes like “Big” or “PowerUp” to improve balance, manage freezing, and prevent falls.

Fear 2: Financial

  • Share day to day management of finances with your Partner.
  • If you do not have current wills, Medical Powers of Attorney, General Powers of Attorney, etc. now is the time to get them. Gather all of your documents together and keep in a safe place accessible by both of you.
  • Prepare a monthly budget and long-term view of your finances. Include possible future PD expenses and insurance benefits.
  • Share your PD prognosis and financial future with family.
  • State programs help cover drug costs on a needs and non-needs basis. Pharmaceutical companies have medications discounts.
  • If you are not comfortable with making financial decisions, seek help from family, service organizations, and professional resources.

Fear 3: Cognitive/Dementia

Mild Cognitive Decline and PD Dementia are broad terms for opposite ends of the same neurological spectrum and transition on the spectrum over time is slow.

  • Have conversations with your Care Partner or PWP using the Parkinson’s Golden Rules as a basis for all conversations.
  • Take a coping skills and/or anger management class.
  • Meditate/seek spiritual guidance.
  • Ask your neurologist or movement disorder clinician to check cognitive functions and talk with you about your status at each visit.
  • If a serious decline is occurring, consider a baseline exam so a professional can see changes over time in executive function, short term memory and long-term memory.
  • Ask your neurologist about medications for depression, apathy, anxiety, fatigue, or Alzheimer’s.
  • Consider therapy or couples therapy.
  • Isolation increases the risk of cognitive decline. Maintain and increase social interactions. Join your Caregiver Support Group. Enlist family support. Explore community assistance.
  • If cognitive issues progress, financial, medical & other decisions will shift to the Care Partner.

Fear 4: Losing Care Partner or PWP

A PWP or Care Partner can be lost through your attitude, a Care Partner leaving, or one of you dying.

Attitude and Care Partner Leaving

  • Make an effort to be the person you used to be.
  • Have conversations with your Care Partner or PWP using the Parkinson’s Golden rules as a basis for discussion.
  • As roles change, be proactive in maintaining your relationship.
  • Help your Care Partner to take a break.
  • Find a new passion you both can share.

Dying

  • Be aware of the five stages of grief and how to cope with each.
  • Establish your own support network.
  • Join a grief support group.
  • If you require physical support, have an alternative plan.

Fear 5: Ability to Communicate

  • Get your hearing tested and, if needed, get hearing aids.
  • Perform facial exercises so you can express emotions for as long as possible.
  • Get your eyes checked regularly by a Specialist in Parkinson’s vision issues as most problems are correctable.
  • If your voice is weakening, take a “Loud” course and participate in LSVT refresher groups.
  • Tell people it is OK to ask you to speak up.
  • Communication takes practice!

Summary

Fears are a part of life and lurking in your subconscious. Most fears can be put into perspective and minimized by:

  • Acknowledging and defining your fears.
  • Sharing your fears. (While your Parkinson’s fears are unique, many others have versions of your fears. Sharing is cathartic, makes one feel less alone, and provides ideas for managing the impact of your fears.)
  • Preparing a plan.
  • Plan Execution

While you may have Parkinson’s, the quality of your life is up to you.

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