Perseverance is inspiring
and red lentil tortillas
I have two people in my life whom I love very much. One is through Michael’s side of the family and the other is through my side. Over the years we have all grown together, played in the Mancieri 4th of July golf tourney, and sat at the Christmas Eve dinner table together. Our children are grown, if at different ages and stages of young adulthood. We are at or nearing the point in our lives where our attention turns towards the next chapter, to what's next? It is meant to be an exciting time which is why neither of them could have guessed the additional and unwelcome news they would receive: a diagnosis of Parkinson’s.
Their individual stories are unique as Parkinson’s shows up differently in everyone. I have been in both of their company over the last five years and their actions, time and again, led to a hypothesis I would like to share with you: The person you are you will continue to be for as long as you're physically able. Even then, I would argue they will still be themselves. Dina and Ed live on purpose, maybe more so now. They have inspired so many before and after their diagnoses and as I was writing my newsletter this week about visiting Dina in Florida it naturally led me here. I asked both of them if I could share a bit of their lives and while this is told through my lens I hope you may take away a bit of inspiration for yourself.
The Mayo Clinic gives an overview of Parkinson’s:
Parkinson's disease is a progressive disorder that affects the nervous system and the parts of the body controlled by the nerves. Symptoms start slowly. The first symptom may be a barely noticeable tremor in just one hand. Tremors are common, but the disorder may also cause stiffness or slowing of movement.
In the early stages of Parkinson's disease, your face may show little or no expression. Your arms may not swing when you walk. Your speech may become soft or slurred. Parkinson's disease symptoms worsen as your condition progresses over time.
Although Parkinson's disease can't be cured, medications might significantly improve your symptoms. Occasionally, your health care provider may suggest surgery to regulate certain regions of your brain and improve your symptoms.
The outlook
Dina knew she had Parkinson’s long before the diagnosis. It took the neurologist many tests and one year later she received confirmation. While the news was unsettling to her closest people, she was thankful. She doesn’t do well with the unknown, she thinks of every bad outcome; but verify, give her something she can work with and she is on her path. “I have a path, we have a path. Now start living your life to have the best quality of life.” Dina shared with me. And she did just that.
We met in 6th grade. Fast friends. Dina was an athlete and it was no surprise when she became a PE teacher and a coach. Outside of the classroom she will help anyone, even if you don’t think you are looking for it. When she researched how to beat the shit out of Parkinson’s she joined a gym that specifically addressed the needs for people with Parkinson’s. Immediately she formed bonds with her peers. In true Dina fashion she went in with a positive attitude and 110% effort. She also helped where she could and gave advice based on her own coach training to ensure all were receiving what they needed. She understands and treats her physical workouts as her job because it is. She was determined to use her athleticism to keep the progression away. And it worked for some time.
Dee doesn’t have many low points regarding Parkinson’s. She has never allowed them in and even her closest friends would say we have not seen it. That is private, if at all. She had had the conversation with her friends at the Parkinson’s gym and they explained she would know when it came time for medication. She wasn’t interested in medication as she has always used food as medicine. And yet the day finally arrived. The terminology she used is perfect, “I acquiesced.” But inside, she felt like she had failed. It took some time for her mindset to catch up with what she innately knew: it was the progression of the disease and not her efforts. Her identity and the way others identify her has not changed.
Ed was diagnosed five years ago. He said he was stunned at the time. A couple months later it was confirmed when the neurologist who did the brain scan sat him down and said, “You have Parkinson’s.” Mic drop. Ed appreciates that she just said it and gave him a moment. When she asked how he was, he told her he felt like he had flunked his college exams. That feeling when you are punched in the stomach and every feeling that comes with it.
On the heels of this story though Ed shared that his doctors commend him on his attitude. That’s not hard to believe. This is the man that annually drove two hours on Christmas Eve, enjoyed his family for the evening, and was the designated driver safely returning his loving family the two hours home well after midnight for over 30 years without complaint. (At least not to us!) He sees his primary care doctor and his neurologist, he talks about his sleep and other things they ask of him. The neurologist tells him to focus on good health, all the things that come with that and his positive attitude to slow progression. His feet are firmly planted on the ground. He hits a bucket of balls daily, golf helps challenge brain, balance and coordination and he really enjoys it. Then, he either goes to the gym or when he doesn’t want to go he takes a walk.
That's how he approaches it. He doesn’t want to harp on it. He does things to make himself feel better and that's it; let's move on. He underscored that we are all different. I am not on meds, I have a lighter case than some but who knows in the future. Both he and Dina live very much in the present.
Looking forward—meaning living for today
Ed and Lori (Mike’s cousin) are at a point in their lives where they have chosen to travel, take all the adventures they can and enjoy. From the Azores to Hawaii to Europe and most recently Costa Rica. They are also committed to family and friends. They have come to see us twice (cousins weekend) in the past year and when they travel the Eastern seaboard to visit with their two sons around Easter they will also be visiting a few friends whose relationships have recently been rekindled.
Dina and Jeff are not yet at retirement age and they have created a beautiful second home so she can be warm almost year round. Jeff travels back and forth while friends and family visit to make the time a little less lonely when Jeff cannot be there. Dina is known for her hosting skills and has had to come to terms (with herself) and set some boundaries which was expansive for me. She shared how putting her needs first is something she must do to help herself and others. When Mike and I recently visited for a long weekend we were determined for Dina to not miss Jeff too much. She told us that she is going to take up golf again for the same reasons as Ed above, it helps with Parkinson’s, so the three of us went to a driving range and had some fun. It was lovely having the warmer weather, the beach and the pool.
There are volumes of stories untold on Dina and Ed living their lives as this newsletter can only highlight so many. I hope I showcased these two beautiful humans, who after receiving news that forever altered their lives, chose
to live,
to love,
to persevere
and to be themselves.
They don’t want us to be weird around them. Unfortunately, we live in a time where most of us are not taught (children and adults alike) how to act around people who are different so we avoid; ignoring usually does not help, or we look at them with pity even though we don’t want to, that doesn’t help either.
Remember my hypothesis? They are still the same person. Ask a question, admit your own fear, but try your best not to treat them differently. They are Dina and Ed. Dina is going to say something that catches you off guard, ha ha, don’t be offended, and Ed is still going to be Andy Griffith. Why? They are who they are to their core and they belong to us. Parkinson’s has not changed their essence and we are fortunate to bear witness. Sending love and compassion to anyone reading who may be diagnosed with a degenerative disease or chronic health issue or the life partner of someone who has been diagnosed. You are still you.
Recommended recipe
For those people who are diagnosed with Parkinson’s one of the many side affects that comes with it can be constipation. Drinking a lot of water helps, but so too can the fiber from beans, lentils, and legumes. Below is a recipe to make wraps for sandwiches. Each has 6.5 grams of protein, 7 grams of fiber and 10% of daily iron intake. You can make it with as little as the two ingredients—red lentils and water, but feel free to experiment with the optional spices to get a taste you really like.
I fill these tortillas the same as I would with flour or corn tortillas, with more beans, all types of roasted or sautéed veggies. In the morning you could make a fried or scrambled egg with some avocado and tomatoes. There is a many ways to eat these. The recipe below should give you 8-10 pancakes depending on the thickness of your batter.
Red lentil pancakes, tortillas or wraps
1 cup of red lentils
2 cups water
salt (optional)
optional spices…1/2 tsp cumin, coriander, chili powder, garlic powder, 1/4 tsp smoked paprika, ginger (I used cumin, chili powder and garlic powder)
Rinse the red lentils
Place in a bowl and cover with water and soak for 6 hours up to over night. Pour the bowl of lentils and any remaining water from the bowl into a blender.
Blend on high speed until all lumps are smooth. You may need to stop a couple of times to scrape down the sides. Add the spices and blend until incorporated.
The batter will be similar to a thick crepe batter.
Cook in a nonstick skillet or cast iron skillet. Heat the skillet for approximately 2 minutes to warm up. Add a little olive oil if you are nervous it will stick. Scoop 1/4 cup of batter onto the skillet and spread out into about a 6 inch tortilla. Leave on for 60 seconds, maybe a little longer depending on how thin you spread it.
Flip and keep for another 60 seconds. You want to have a few brown spots like regular wheat tortillas look. Cool on a wire rack or paper towel.
The tortillas will have some give and should easily fold and roll. Enjoy and remember, Start with Beans!
Contact
If you have any questions on integrating beans consistently for gut health now and into the near future, please email me at Denisemancieri1@gmail.com. Feel free to comment below if there are topics you would like to see.
Please share this newsletter with others if you find it may assist them in adding beans to their diet. Or click the heart, below left, so I know you were here. Thank you!
Note: I am not a doctor. I am a teacher and an educator with an earned doctorate in educational leadership. I enjoy research and I can distill large amounts of information into easily understood and digestible pieces allowing people to understand what is happening to their body and possible steps to reverse it with food as medicine. I have healed my own GI issues through choices with food. I followed Karen Hurd’s bean protocol diet, I meditated and still do and I healed. I feel compelled to be in service and educate others as the more people eating beans, alongside a healthy diet and sharing their stories the more people will live a healthier existence. Joy, peace and freedom abound. Please see your doctor and discuss nutritional options before you change any course of action with your health.