EVC at Kiwanis?

Parkinson’s is the fastest growing neurodegenerative disease in the world.

From my readings I understand that interdisciplinary teamwork is required for the treatment of people with Parkinson’s disease and their families is the optimum approach, is the consensus.

Parkinson’s disease (PD) is a chronic, progressive neurodegenerative and multidimensional disease that involves a range of disabling motor and nonmotor symptoms. These symptoms can have a major impact on the quality of life of PD patients.

When I moved to Kiwanis, my Parkinson’s had gotten more debilitating. I was personally experiencing the multidimensional nature of the disease. What to do? I did not yet know how Kiwanis worked as an organization. As a starting point I sent the EVC manual to the management hoping to trigger a discussion of how that would like in the Kiwanis environment.

From the Every Victory Counts manual:
What does personalized and integrated care look like? in a perfect world, it’s a team made up of at least a movement disorder specialist, a primary care physician, and a nurse specialist who directs the show. The second ring of care includes a physical therapist, occupational therapist, speech-language pathologist, rehabilitation specialist, sleep specialist, and maybe a registered dietician. 

The outer ring of care consists of a urologist, gastroenterologist, ophthalmologist, palliative care specialist, dermatologist, and dentist who understands Parkinson’s.

This is not to say that all these different professionals should be involved for every individual with Parkinson’s, let alone at all times. This long list merely indicates how many professionals are out there to offer support, tailored to your individual needs.

Importantly, taking a personalized, integrated approach to care doesn’t end with setting up appointments with experts. That’s just the beginning. Your mindset, daily exercise regimen, nutritional choices, and the people you surround yourself with, are critical pieces of living well. So essential that unless you have those dialed in, medical treatments will only help so much.

Where do we stand?

So far no meaningful discussion has taken place. In principle the social worker was given the task to act as the EVC coordinator. As for the rest it left up to me to make suggestions.

The manual also suggests that the pwp (person with parkinson’s) should try and be as knowledgeable of the disease as possible. That I have tried to do.

What are the realities?

There really is no one who is willing to take the time to discuss the EVC concept with me.

We are experiencing dramatic stress on the job market in general and the healthcare system in particular. Getting access to healthcare has become problematic.

At the same time we are experiencing a financial crisis making the running of an institution like Kiwanis challenging.

My own situation has worsened. I am in pain almost constantly, and suffer Parkinson’s symptoms most of the time, with the medication seemingly no longer giving any relief. I struggle to find enough mental energy to think about EVC.

I have looked at the current status of research and it is not encouraging. In a paper on neuroplasticity, they state that exercise is the only way to slow the progression of Parkinson’s. They recommend that you especially do as much for yourself as possible, even if it hurts. Then the brain will reprogram whatever neurons you have left to take on new tasks.

I have tried to do that, not to popular acclaim I am afraid. My walking ability has improved but the pain is terrible – one just has to push through the pain. Balance is still a growing concern and I know I have to be extra careful. A lack of sleep is another problem. With the restless leg syndrome, neuropathy and the dreams, I am lucky to get a few hours at most.