Yip…. one becomes very open and honest with fellow PWP!! We understand one another!!
~Rose Meynell Bishop, Johannesburg S.A.
When I meet a Person with Parkinson’s (PWP) there is an instant feeling of connection. Before long I have shared my diagnosis date, my outward symptoms, medications and how they are working and she has shared hers.
So it happened with my new friend Rose Meynell Bishop. I was reading posts on a Facebook page designed for women with Parkinson’s when I saw Rose’s post about walking on the Camino de Santiago. Immediately I messaged her and we jumped right into the deep end with our conversation.
Before I continue with Rose’s story, here’s a little introduction to Parkinson’s for those not familiar, and a review for the rest of us:
Outward symptoms noticeable to the PWoP (People without Parkinson’s) are mostly motor movement based. Tremors in the arms and legs, stiffness and rigidity, stooped posture, slow shuffling steps, very soft voice, flat “affect” to the face, strange jerking or movements of the body, balance issues and falling are just some of the issues faced.
Parkinson’s disease cannot be cured, but medications can help control symptoms. In some later cases, surgery may be advised. Here is the list of major medications:
• Dopamine precursor: Drug which can pass through to the brain and readily get converted to dopamine. Helps in managing Parkinson’s disease.Levadopa.
• Catechol-O-methyltransferase (COMT) inhibitors: Inhibits the action of catechol-O-methyl transferase an enzyme which is involved in degrading neurotransmitters. Entacapone, Tolcapone, Opicapone, Nitecapone
• Dopamine agonists: Activates dopamine receptors and helps in managing the disease. Bromocriptine, Pergolide, Pramipexole, Ropinerole
• MAO-B inhibitors: Increases the amount of dopamine in the basal ganglia by inhibiting the activity an enzyme that breaks down dopamine. Safinamide, Selegeline, Rasagiline
After my new friend and I have compared these notes the conversation goes deeper. We talk about the most personal of the symptoms, the non-motor issues which most people without Parkinson’s don’t see, don’t know about and have never experienced. These include disturbances is smell, sleep problems, depression, anxiety, psychosis, hallucinations, urinary incontinence, constipation, sexual concerns, fatigue, cognitive changes, weight loss, excessive sweating, melanoma, visual concerns. The list goes on.
My deep-water conversation with Rose went to her immediate concern of dealing with urinary urgency and constipation as she walked on the Camino. As if these two ailments are not difficult enough at home, dealing with them as one walks through the Spanish countryside is unimaginable. Bathrooms are not readily available. Smaller villages may not have farmacias where incontinence supplies are available, and then, there is always the language and culture barrier.
I am a problem solver. Of course, I am not going to solve Rose’s non-motor symptoms of Parkinson’s. Yet, I thought about what I would do if I was in her situation.
We chatted online in that 9-hour difference between Northern Spain and the west coast of the US, where I live. We talked about using google translate to communicate with the pharmacist. For me, alcohol, carbonated beverages and caffeine make my urinary issues more challenging. For Rose, those were the exact beverages that resulted in less urgent problems. Since it was very hot in Spain while Rose was out on the Camino, she had to have lots of fluids. I suggested she make those fluids count by drinking AquaArius, a European sports drink and having some salty snacks during the day.
Rose completed the Camino and by her report spent some time in the square where she cried about her accomplishment.
Its an accomplishment for anyone to complete even a segment of that walk. Add Parkinsons disease to that pilgrimage challenge, and the fact that she walked solo, and you have a journey to be proud of.