Thanks to my local support group leader, Zack Earp, I ran across an excellent article about meeting someone with Parkinson's. In "Preparing People to Meet Someone with Parkinson's," Davis Phinney's daughter highlights some important visual symptoms to understand. Kelsey Phinney explains that in addition to the expected tremors that a majority of patients display, though not all PD sufferers have tremors, there are facial expression, balance, stiffness, and communication issues to be aware of. Kelsey is a neuroscience graduate who wants to help the broader community understand that by preparing people to meet a Parkinson's patient, they may be able to get past some of the visual distractions and see the individual as more than their brain disease outcomes.
It is important to understand that ideas may not be as fast to emerge in a conversation, though your friend or loved one with PD may have some great stories to tell as an individual who once possessed a very expressive personality. The facial mask and delay in getting words to be formed in a discernible syntax are issues that may put off they listener, therefore it is worth knowing what to expect in order to appreciate that the Parkinson's patient is not defined by their disease, but is the person inside the body struggling with odd-looking movements or lack of facial expression.
My final point is that in addition to physical movements, postures of limbs and facial expressions, there are bodily functions of digestion, heart rate, swallowing, breathing and urinary systems, to name several, but not all of the issues. These additional symptoms are autonomic in nature and would generally be found in this degenerative brain disease.
Some days are better than others, but I appreciate the points Kelsey has made, if you take a few moments to read this article it will equip you with some great suggestions in preparing distant relatives and/or friends to meet your loved one with Parkinson's or a Parkinsonism-plus condition such as mine. -- Patient-Online
I couldn't help my excitement to receive a link from close friends about a Choir in the San Diego area for Parkinon's Patients. You might want to go and read the whole article here: Parkinson's Patient Choir. It has been shown that the disabling effects of Parkinson's Disease, and other Parkinsonism-Plus conditions such as my diagnosis, include vocal difficulties known as dysarthria. Singing is a very beneficial therapy for vocal issues caused by a degenerative brain disease. A speech and language therapist started the inaugural choir for Parkinson's sufferers known as the Tremble Clefs in Scottsdale, Arizona in 1994. My Uncle Ned Brooks, who was a Parkinson's patient who passed due away early in the last decade due to its complications, was in a choir for PD patients in Scottsdale at that same time, so I am confident that he was likely in that very group! Thank you to my friends Lori Copeland and Marlene Fisher for sharing this information with us!
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II Corinthians 12:10
Therefore I take pleasure in infirmities, in reproaches, in necessities, in persecutions, in distresses for Christ's sake: for when I am weak, then am I strong.
I couldn't help notice the story about Meryl Streep gracefully speaking about President Trump's ungracious physical and verbal mockery of a journalist he came across on the campaign trail. The New York Times reporter, Serge Kovaleski, has arthrogryposis, a congenital condition affecting the joints. Arguably one the greatest screen actors in the last several decades, Ms. Streep spoke gracefully and articulately about the truth, stating that this was insulting to her and many others.
Trump didn't wait long to tweet that this had never occured, which is hard to stomach given the number of times disabled people such as this man, myself and many friends of ours, had to watch the newsreel showing Donald Trump defensively depicting this fellow in a mockingly insulting manner. He claims it didn't happen. You decide:
I do not have sympathy for Trump or those who voted for him if they claim that "Hollywood-types" are always attacking the lack of politcal correct-ness in society. PLEASE! Don't insult the intelligence of those with the neuromuscular/skeletal disease that this reporter suffers from, or those of us with Parkinson's or Parkinsonsonian disorders that have very similar involuntary movements. Donald Trump is the man with all the power and an opportunity to shed light on the struggles of American citizens. When will he begin to be the President for all the people? If he is insulted that some are offended and this results in his complete denial of reality, we have more of an issue than a serious breech of proper standards of courtesy and respect.
I look to my Presidents-- e.g., George W. Bush, Barack Obama and now President Elect Donald Trump-- to be a champion for awareness of Parkinson's, MSA, PSP, FTD and CBD, among many other conditions. He is our leader and should represent all Americans, even those of us who have movements and postures of our limbs and bodies that may not be easy to look upon. We deserve that much respect. Lying about it is just beyond disappointing and hurtful-- it is despicable.
Please put down the Twitter and start reading about national security and demonstrating faith in the good people of our US government that are going to be aiding you in your efforts and maintaining your safety and well-being.
I believe in the office of the President and want to give you the respect and honor that is due your victory and your position. Would you in turn please honor those of us with physical disabilities?
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Romans 5:3
And not only so, but we glory in tribulations also: knowing that tribulation worketh patience.
Thanks for reading and supporting! -- Dan Brooks, Ed.D.
In a few days, we will enter a brand new calendar year. There is nothing magic about putting a new 2017 calendar on the wall and there certainly isn't any certainty that we will change as we might desire to do. However, I do believe these cultural landmarks and measuring sticks do help us to organize the spiritual and emotional sides of our lives by reminding us to consider who we are and if we are true to our purposes as we live each day.
I am reminded that God is the center of all that I do. When I forget that, I get off course and end up tossed and turned by the churning seas of trouble. Looking to Him, who is my creator, and He who leads me in the direction I take and how I respond to the good things in my life and the difficulties, as well.
Look back over your life and consider the big picture -- hasn't God been there all the while, opening doors, bringing comfort, guiding and directing you and bolstering your courage when you can't see how to go on? I can't help but rejoice at the end of this year for the many ways God touches our lives and His graciousness toward me and my loved ones-- family and friends!
I thank God above for our sons, our daughters in law, our granddaughters, our parents-- all of which are living-- and our brothers and sisters in our nuclear families. So many blessings in our church, our health care, our doctors, our Pastors, our many friends and all of the neighbors and community we are blessed to come in contact with! God has brought us a new Movement Disorder Specialist, a wonderful Primary Care Doctor and a very dedicated new Neurologist at our clinic. Our Neurosurgeon did such a great job on my surgery to implant my new DBS device in my chest. The healing has been so smooth!
I think over my life and the decision I made to respond to His call and the guidance I received in my early years in Lakewood, CA as a high schooler-Christian from my Pastor, who led our youth group (and me) in the ways of Jesus. He also taught me so many practical things about life-- camping, fishing, tennis, social justice and walking with God in Christ.
Yesterday, we received a call from this very high school Pastor (who was the Associate Minister of our church) whom I haven't seen in 40 years! He and his wife, who is also my friend, are coming to visit us for coffee next week. We are so looking forward to seeing them. We will have the chance to thank them for the influence their lives had on my life, and indirectly, on those of my children.
God has been good. He has been faithful. Not everything goes as expected, but He is with us, holding us through it all.
In II Corinthians 7:10, Paul writes:
"Godly sorrow brings repentance that leads to salvation and leaves no regret..."
I know that we suffer but not in proportion to how Christ has suffered on our behalf. Through it all, we can say, "To God Be the Glory, for the things He has done! All that I am and ever hope to be: I owe it all to thee." -- Andre Crouch
Below is a video of this very song that I recorded in approximately 2010, when my hands and voice weren't as affected by Parkinsonism-Plus.
Happy New Year, my friends! Thanks for your much support and prayers. -- Dan
