Sharon’s son, George: 1/1/2020……. I lost my mother, Sharon, due to Parkinson’s disease. I wanted to share my thoughts and ideas on tough topics in caregiving and send thoughts and prayers for others diagnosed and caregivers, so this BLOG was created in their memories.
The Tackling Tough Topics BLOG 12B SPECIAL EDITION: Mental Health Care System and PD By Kendall Anne Fosbenner & Dr. George Ackerman (Sharon’s Son)
1/10/2025
This blog is dedicated to all those caretakers who care for a loved one with any disease and to those who have been diagnosed. We hear you; we see you, and we will never stop fighting until there is a cure!
This month, I was suggested to discuss a critical issue in the PD world of advocacy that does not seem to have enough attention: mental health and the healthcare system. For a few years now, Kendall has been like my family. She had symptoms in early 2003 and possibly even before and was diagnosed in 2009. Today, we advocate… together for awareness and towards a PD cure.
Mental Health
Mental health and PD is not an area that is often discussed because it is a tricky topic. One that brings isolation, depression, and a cast of other vulnerabilities that many feel should be private. Here, though, we discuss every challenging topic because, through awareness, we can bring positive change and rid our world of misconceptions to ensure no one is alone.
Many do not want to associate mental health with the many symptoms PD already causes and creates. Anxiety, apathy, impulse control, and psychosis can stem from PD medications. According to Pontone and Weiss (2018): “An important and yet often overlooked aspect of neuropsychiatric symptoms is that the patient is not the only person to bear the burden of these comorbidities. Family members, spouses, and friends increasingly assume the role of care partner as a patient’s course of illness progresses. Ideally, as a patient’s disability becomes more severe, this partnership helps the patient better manage symptoms, comply with treatment, and remain in the home.” Moreover, the health of PwP and caregivers may depend on open, honest conversations together and with medical professionals. Through communication and awareness, we can ensure there are better treatments, care, and support for those with PD through the journey in the mental health system, if applicable, in their overall diagnoses and symptoms through the progression of PD.
The Health Care System and PD
When my mother was rushed to the hospital due to complications with PD, they were able to assist her but caused even more issues in addition to the numerous medications for PD. Toward her last year in her battle, she showed symptoms of delusions and hallucinations. All mentally and emotionally life-changing areas affected her and the family very badly. That is also when we entered the world of mental health and PD. Not every person diagnosed with PD encounters these, but my mother did. We were advised to see psychiatrists and psychologists, and mainly, they just wanted to provide even more medications. She did not want to go far in the mental health venue when dealing with PD, but the awareness in our experience was not present.
My friend and PwP, Kendall’s Journey
Now, please discover more on this topic straight from an individual who has gone directly through the system, and we share this message for positive change and more support to those diagnosed with PD going through the mental side of the health care system.
The Longest Five Days – A Personal Unexpected Journey into the Mental Healthcare System
By Kendall Anne Fosbenner
I was going through a divorce, getting ready to move out of the state that I was born and raised in, and reacting to medication changes from a new neurologist three weeks before I took myself to the ER. I went to the hospital for a day to get my medication under control. I felt like my heartbeat was slowing at times, and then I was having panic attacks destructive. It was on a Friday late afternoon in June 2024. I signed a 24-hour hold to get them to see what was happening with my medications. They brought me dinner; I ate it and fell asleep.
The Psych Ward – 2 South
The next thing I knew, in the middle of the night, I was being transferred down to the psych ward. It was scary and alarming, and they woke me up from a deep sleep. Armed Security Officers in uniforms had to strip me down and ask me questions. I was having a hard time answering because I was half asleep and groggy from whatever meds the ER had administered. I had to take my contacts out, so I couldn’t see to sign papers. I was also told to participate in everything because that would give me a better chance of release. Most of the staff were less than friendly. Fortunately, there were a few nurses who were very kind and helpful.
Failure to Medicate
They took me off all my meds, especially my PD meds, so I couldn’t walk, talk, do anything, or even feed myself. I had someone help me shower because I couldn’t do it myself. Medication was never given on time, and we all know that with Parkinson’s disease, medication must be taken on time every time to keep the body stabilized. I was considered a “fall risk,” so I was bound to a wheelchair the entire five days I was there. I went in there as a non-smoker and non-drinker. I kept saying that I did not smoke or drink. I wear a 24-hour medication patch as part of my Parkinson’s treatment. The hospital assumed it was a nicotine patch, even though I told them several times it was for Parkinson’s. A family member had to drop off two of my medications because the hospital didn’t have them available, nor were they familiar with them.
Finally Discharged
The State of Florida has a 72-hour hold limit “Baker Act” law, and the nurse informed me that I had voluntarily signed for this. Confused but not wanting to argue, I politely informed the nurse that I wanted to sign myself out as it was past the 72-hour hold limit. The nurse told me it was up to the doctors to sign my release and discharge papers. I met with the neurologist assigned to release me in the late morning of the fifth day. After looking at my chart, I was again asked if I smoked or drank alcohol. My discharge papers and my permanent record now show that I am a drinker with alcohol problems. The discharge papers included a referral to a doctor for addiction, and I was sent home with nicotine patches. Since all my medications had been changed around, my body went into a tailspin. It took me several months to get my body stabilized on the proper medications.
Blessing in Disguise
However, on the other side of that coin, I’m grateful for the time I was there with other people I didn’t know. I also got to see the other side of the mental healthcare system and what it’s lacking. They were not prepared or able to deal with patients with disabilities like Parkinson’s and other diseases and other physical conditions. The facility was inadequate, and it was not sufficient for anyone to care for the diverse population within the ward. They allowed patients to go downstairs to get fresh air, but that only applied to everyone except those in wheelchairs. They are entirely understaffed, uninformed about Parkinson’s disease, overwhelmed, and couldn’t even get the paperwork records correct. I was in there with all walks of life, including gang members, and I was scared to death, but I made it through. That’s the place I never want to return to ever again.
The Money Side of the Healthcare System
Within a few months, I received an “Explanation of Charges” for over $65,000. My insurance company, BCBS, denied paying the bill and never informed Medicare. My bill has now been sent to a collection agency. I never even got an original bill because I moved out of state the day after I got out of the hospital, and the USPS never even forwarded my mail even though I put in a mail-forwarding order.
Recommendations
I believe it is essential that our healthcare system recognizes that mental health is critical. A standard protocol needs to be established to ensure that anybody with any disability can be taken care of properly, effectively, and compassionately. Intensive training for staffing should be one of the goals, especially for patients with any type of debilitating disease. More consideration and evaluation of patients should be done before placement in mental facilities.
Kendall’s Personal Goal
Advocate and facilitate the necessary changes to our Mental Health Care System
Never Give Up and Be Kind Always!!!
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George’s Biography
Dr. George Ackerman is from Brooklyn, N.Y. He now resides in Florida and works in the fields of law, police, and education. George lost his mother, Sharon Riff Ackerman, on 1/1/2020 due to Parkinson’s Disease.
George wanted to honor his mother and continue to help in the Parkinson’s awareness cause, but he did not know how to bring about change. With my family, we started TogetherForSharon® to keep my mother, Sharon Riff Ackerman, ‘s memory alive and share the message of Parkinson’s Awareness and hope for a cure.
Today, https://www.togetherforsharon.com/ reaches thousands of individuals across the country to raise awareness of Parkinson’s disease. George currently interviews individuals throughout the Parkinson’s community, including various foundations, caregivers, and Parkinson’s warriors, to help share their stories and causes.
References
Pontone, G. and Weiss, H. (2018) Mental Health and Parkinson’s Disease. Retrieved from https://practicalneurology.com/articles/2018-may/mental-health-and-parkinsons-disease