Taking on the Fight for MORE
About 15 years ago, I first noticed that my mother's face was not as expressive as it used to be. My siblings and I didn't think that anything was necessarily wrong but then began to see other muscular problems such as poor posture and an odd arm swing. The family started to talk about it but no one wanted to raise the issue with Mom, no one wanted to take on the inevitable fight. Mom tripped and wasn't able to stop herself, wasn't able to brace for the fall with her hands. At that point, I knew that I had to get my Mom to the doctor.
Finally, Mom agreed to see a doctor when the falls started getting worse and even she could no longer deny that something was amiss. The doctor put my Mom on L-dopa and it was of mild benefit although the doctors wondered if she might also have a related dementia disorder. Her condition continued to deteriorate despite the fact that the doctors said it was stable. Convinced that the doctors were not listening, I took Mom to see a movement disorder specialist who was able to better manage the disease and monitor her progress and/or deterioration. My dad was Mom's primary caretaker most of the 15 years she has had Parkinson's disease until he was hospitalized and unable to do it anymore. In a difficult decision for everyone, Mom became a resident of a nursing facility. Dad, now recovered, visits everyday and still makes sure that Mom has the best care possible.
I have found that caregivers are often ignored or marginalized by doctors and, along with family members, need to fight to be heard. If you still do not feel heard by your doctor, find another that listens. I found that Dad often carried most of the caregiving duties solely on his own shoulders and we had to remind him, repeatedly, that it was not his responsibility alone. Dad and others need to hear from doctors and family members on a regular basis that they don't need to make excuses or feel guilty about their limitations as a caregiver -- they are used to fixing everything for everyone, and that just can't be done with PD, and that it's ok!
I urge all caregivers to be informed and fight to be heard.
Kind words for a caregiver
For the caregiver, be understanding. For the caregiver, be as positive as possible. For the caregiver, be good to yourself. For the caregiver, seek help for yourself. For the caregiver, seek respite.
"Defying Despair" patient
I was diagnosed at age 25 and have had dbs surgery last year at 38. I have since written a book called “defying despair” and work to help raise awareness for Parkinson's disease.
PD patients: The way they were
I have a family member who has been living with Parkinson's for 10 years now. While it is under control and hasn't really progressed drastically, it is an ongoing battle to care for and watch this person not be able to live the way I remember them.
Dedicated novelist
I have a special passion for Parkinson's disease such that I have written 2 novels that are dedicated to research treatment related. Novel: Black Deception & Cloning.
One of our finest diagnosed
I just found out I have PD three weeks ago. Have always been very healthy and fit. I work out regularly and am a police officer. Still trying to get my mind to get a grip on what is going on.
Long fight lost
My best friend's dad just passed away after his long fight with Parkinson's. It was so hard on the family to just watch him dwindle away.
Plea to find a cure
My brother's wife has the most aggressive disease... after just 5 years she is now in a nursing home undergoing intense therapy. Such a heartbreaker to see this vibrant 55-year-old woman succumb to Parkinson's so rapidly. Please find a cure soon!
Daughter desperate to help Mom
My Dad has been diagnosed and my Mom is the primary caregiver. I want learn more so I can help my Mom.
Family stricken with PD
My grandfather died from Parkinson's. My Uncle has Parkinson's and my father is starting to show symptoms. I've already lost one life to this disease, so any difference I can make is worthwhile.
Walking for her grandmother
My grandmother passed away almost 2 years ago from Parkinson's disease. This was my first year walking in the Unity Walk and I felt as if she was there with every step.
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