The full infographic can be viewed by clicking the link below or the image to the right.
Our challenge – “Depression and anxiety have the greatest impact on health status”
In 2012, the National Parkinson’s Foundation presented findings from the largest study to date of clients with Parkinson’s Disease (PD) and their caregivers – The Parkinson’s Outcomes Project – A report to the community. One key finding from this landmark study is that depression and anxiety had the greatest impact on health status for clients with PD.
“Scientists showed that the impact of depression on health status is almost twice that of the motor impairments universally associated with Parkinson’s.” Parkinson’s Outcomes Project – 2012
These important findings can be validated by scanning the many client discussion boards and blogs. One moving quote says it all:
“If you happen to come across someone with Parkinson’s (we are out there!) you are likely to notice the tremor and the shuffling, unsteady walk.
The symptoms you won’t see are the feelings of restricted movement, the frustrating disobedience the body has for sufferers’ conscious will and the subsequent feeling that you are a puppet whose strings are controlled by Parkinson’s.
You will miss the sheer mind numbing exhaustion, the feelings of helplessness and depression, the urge to urinate every 5 minutes, the food that gets stuck in your throat because swallowing is affected, the irresistible sleepiness and the battle not to close yourself down in the face of all this.
What is visible is the physical impact of the disease. What is hidden is the one-to-one dialogue a sufferer has with their Parkinson’s. The disease can dictate the conversation or you can reassert yourself and get your voice heard. This internal dialogue is the battleground on which the defeats and victories against Parkinson’s are played out; it is where you can choose your reaction, see space for yourself and live alongside your disease.” National Parkinson’s Foundation Open Forum
Uncovering grief and loss
This study drove me to read through the many symptoms of Parkinson’s disease once again. I also thought back to the many residents that I cared for during my days as a recreational therapist in the long-term care setting. The word that kept coming to mind as I reflected was “loss”. When you read through the symptoms of Parkinson’s Disease, you frequently see the words, “loss of”.
“Loss of mobility”….. “Loss of independence”….. “loss of facial expression”…… “loss of balance”…. “loss of roles”
This made me wonder if we need to also focus efforts on uncovering and treating the grief and loss that may be driving – or related to – depression and anxiety. We tend to isolate the concepts of grief/loss to death, dying, and end of life issues. I think this is a mistake. The MayoClinic defines grief as…
“…the natural reaction to loss. Grief is both a universal and a personal experience. Individual experiences of grief vary and are influenced by the nature of the loss. Some examples of loss include the death of a loved one, the ending of an important relationship, job loss, loss through theft or the loss of independence through disability.”
Educate clients and caregivers about the Stages of Grief
In 1969, Dr. Elisabeth Kubler-Ross changed the face of healthcare when she developed and published the “Five Stages of Grief”.
It is worth noting that there are two stages beyond depression. I can’t help but wonder how impactful it would be to educate clients with Parkinson’s Disease and their caregivers about the stages of grief, and provide the strategies and tools that can help them reach acceptance and adjustment. One person living with Parkinson’s Disease noted…
“Grief may be your dwelling place right now. The loss of freedom or the ability to do what you used to be able to do. The loss of a loved one to a chronic illness. The loss of a dream because of a chronic illness. The loss of something tangible, real and of value – life as you knew it before you found out you had Parkinson’s disease.” Grieving over Parkinson’s – Sherri Woodbridge
Empower clients to self-assess, share, and overcome depression, anxiety, and grief
The Hamilton Rating Scale for Depression (HAMD) is one of the most utilized, validated tools used by health providers to assess for depression in the mental health field. The Parkinson’s Outcomes Project community report notes that “acknowledging depression is a critical first step to toward effective treatment”. Depression is often missed by healthcare providers and unrecognized/underreported by clients and caregivers due to stigma and stoicism.
It is interesting that there is a call-out on the top of the HAM-D tool that states, “to be a administered by a healthcare professional”. As a health educator, we are encouraged to empower clients and caregivers to self-manage and take control of their condition and treatment. I wonder how impactful it would be if we developed more self-assessment tools that would help those with Parkinson’s Disease to identify and report symptoms of depression, anxiety, and grief.
The National Parkinson’s Foundation has moved in this direction with a great self-assessment tool entitled “Stages of Adjustment to Parkinson’s”.
Acceptance and Adjustment
Northern Illinois University cites an additional and very relevant phase of grief – Accommodation.
“You begin to live your life with your loss. This does not mean that you have forgotten or ignore your loss; it means that you have accepted your loss and can accept your life with the changes that the loss has brought.”