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Parkinson’s Disease is not my friend

Parkinson’s Disease (PD) and I are not friends. PD has waged its battle on several members of my family over the past 4 decades.  My Mother, Rosemary (my personal hero and the inspiration for Home Care Assistance of Annapolis) has been battling PD for the past 6 years. Her Mother, Noreen, my maternal Grandmother, died from PD when I was a little girl.  I don’t remember her well, but I do remember that I loved her and that she was a concert pianist who could no longer play the piano due to rigidity and tremors brought on by the disease. I remember how sad that made my Mom, who also plays the piano and taught piano for years.  My father-in-law died from PD – he didn’t have tremors or shaking but he was weak and tired all the time and some days he struggled to get out of bed and play with his grandchildren and great grandchildren, whom he adored. And my Father, Bernard, died from a fairly rare Parkinsonian-Type Syndrome called “Multiple System Atrophy” or Shy Drager’s Syndrome.  So when it comes to Parkinson’s and me, it’s PERSONAL.

Just Keep Moving – Do One Thing a Day

And now, at Home Care Assistance of Annapolis, I witness PD waging its battle over my beloved clients and their family members and it makes me mad.  Parkinson’s medications have come a long way since my Grandmother died in the mid-1970s, but the disease rages on without a cure and that is frustrating for families like mine and my clients who are affected by it. The good news is that excellent Parkinson’s advocacy organizations are out there – providing resources to patients and families and relentlessly searching for a cure. For my own part, I gave up intensely researching Parkinson’s Disease a few years ago because it just made me more anxious and worried about my Mom’s care and disease progression. My Mom and I finally embraced the fact that PD has its own course and affects every person differently. And while always progressive in nature, every patient is different. Instead, as a Mom and Daughter Team, we focus on the simple advice of my Mom’s Neurologist, Dr. Randolph Stephenson, who told us one day “Just keep Moving and do one thing a day.” So that is our goal. Sometimes, that means my Mom comes downstairs, eats dinner and goes back to bed. Sometimes, that means Mom goes to church and out for brunch. Sometimes, that means Mom holds onto the kitchen counter and dances in her own way to whatever music her grandkids are playing. But she keeps moving and you should too…

Following are some tips for care givers dealing with mid-stage Parkinson’s Disease:

During the initial stages of Parkinson’s disease, your loved one may be able to control most of their symptoms with lifestyle changes and medication. The mid-stages of this progressive disorder, however, herald the appearance of physical and emotional changes that can pose a challenge for patients and their caregivers. From handling changing medications to tackling conversations regarding independence, here are the areas for Parkinson’s patients and their caregivers to focus on, along with effective care tips for successfully managing the transition.

  1. Coping with Increased Symptoms
    In the mid-stages of Parkinson’s, patients often encounter increased physical symptoms that can hinder movement and increase the risk of falls. Tremors and stiffness may begin to occur more frequently and last for longer periods of time. When this occurs, it is important to inform the patient’s physician who may need to change the strength or dosage of the medications included in the treatment plan. Freezing and impaired balance may also be helped by physical therapy and strategies such as marching in place or rocking until a patient is able to move freely. If you have an aging parent or loved one who is entering the mid-stages of Parkinson’s, learn more about Parkinson’s care in Annapolis for professional care, assistance and respite.
  2. Managing Medication Side Effects
    Although medication offers many benefits for Parkinson’s patients, those in the mid-stages of the disease may find that they experience more side effects due to stronger doses. These side effects include sleep changes (insomnia or sleeping too much) and even impulsive behavior that should always be mentioned to the treating physician who may be able to tweak the treatment plan. Most PD patients are at the mercy of their medications and are bound by the timing of them (another reason to be angry at PD – it’s just annoying). Patients with PD experience more intense symptoms as the medication begins to wear off so timing is everything – especially timing medications around family activities or events. It may be necessary to plan around these periods so that a person is not driving or engaged in other activities that could pose a risk to their health or so that they have achieved peak medication efficacy just prior to engaging in an activity.
  3. Changing Caregiver Roles
    In the early stages of Parkinson’s,caregivers and loved ones may have played a supporting role by listening to a patient’s concerns and accompanying them to doctor appointments. However, the mid-stages of PD usually mark a change in the caregiver’s role as he or she begins to take more responsibility for the patient’s health and safety. During this time, it is important to communicate with the patient about their symptoms so that appropriate measures can be implemented to keep them safe while encouraging independence. This is also a good time to begin open and honest discussions with your loved one and other family members about the future in terms of living arrangements and health care needs so that the Care Team is on the same page and there are no surprises. In my Mom’s case, when she entered the mid-stage of her own Parkinson’s battle, we began to talk about whether she was safe living alone, whether she should be driving, what she wanted in terms of her lifestyle, etc. These conversations may be awkward and difficult at first, but they are essential. In my situation, my Mom and I made a pact that she would age in her own home, surrounded by loved ones and in the environment where she felt the most comfortable. We have had to make lots of changes and adaptations to do this, but we do it as a Team. I have yet to have a client or client’s family member say to me “Oh, I am so happy to be in need of a professional caregiver in my home – I can hardly wait to meet this stranger.” But once the process begins, and the caregiver and the client have formed a bond, I do often hear positive expressions such as “I should have done this sooner” or “I had the best night’s sleep in years” or “I can finally stop worrying” or “This caregiver has become a member of our family.” And that bond is what it is all about.

You can read more about hourly care in Annapolis for seniors with Parkinson’s on our website at www.homecareassistanceannapolis.com or you can contact one of our experienced Care Managers directly at 443-302-2771. We offer free in-home assessments and can help your elderly parent, grandparent or loved one manage basic to complex care needs as the disease progresses.  Found out how we are Changing the Way the World Ages!