Why Go On after Diagnosis?

Why do I go on, you may ask? I have thought about this a lot lately and it is important to rethink your commitments. I decided after I realized I was facing a neurodegenerative disease that I would make the most of the life I have, no matter what would come.

If you or a loved one is facing a neurodegenerative disease, many things are affected. How your body moves and operates will change. Your thinking and your mind will likely be less clear. You may become somewhat depressed and find that your sense of purpose for your life is altered. All of this I have lived through and with.

But there comes a time when those of us with Parkinson's or an Atypical Parkinsonian Disorder must pick up and move forward. It doesn't get any easier and the best time to get started is today, while possibly you still have some control over your circumstances. I know that down the road I face an ever increasing delimma, wherein I will move less well, become less mobile, have trouble with basic daily tasks and in my case, my mind will become less clear-- my speech more distorted. Today is the day to live and make a difference.

I simply want to say that there is still so much more to live, to accomplish, to inspire others to do, and the opportunities to encourage and help other people are immense. We have an avantage because we are seeing life in a way that is in a sense a gift of insight. We have seen what could be the worst and have decided that the best thing to do is pick up and go forward.

A friend named Mary Ann wrote an encouraging email to me the other day and included this quote of an unknown source:

"FOR EVERYTHING THIS DISEASE HAS TAKEN, SOMETHING OF GREATER VALUE HAS BEEN GIVEN."

Read that a couple of times and think about what it means. I think you may find what I did, that there are gifts that came with Parkinson's Plus in my case. I learned somethings about myself and the lives of those around me that I would never have been fortunate enough to realize. I become immensely aware of how special and wonderful my family and friends are. I have even more appreciation for the wonderful wife I have and how much she cares about me. I have grown very close to my grown children and enjoy their company more than ever. I am appreciative of all of the blessings I have in my life-- my faith, my family, my friends, my music, my home and the beauty of the world God has created.

Sure, I get discouraged and yes, I am a bit frightened by thoughts of the future at times. But, you know, this life is a gift and the part of it that is still out there for me, no matter what it may bring, is still to be lived and cherished.

So, you see this is why I WILL GO ON. I hope you will think about adopting that same philosophy, if you haven't already. -- Dan

Parkinson's Conference Leads to Comedy of Anxious Patients!

I have a very interesting and true story to tell, that looking back, may be amusing to you. At the time, this was a tough situation, but I am able to now separate myself from it, as a friend said to me recently. Saturday, October 17, we attended the Parkinson's and Atypical Parkinsonian Disorders Conference at a major medical care facility in Los Angeles County. I was happy to have the opportunity to bring my guitar and perform some songs at the breaks throughout the day. There was a lot that went into this, not to mention the perfectionist side of my personality which meant that I practiced and prepared for weeks to do my best. Fighting a neuro-degenerative disease means that singing and fine motor skills, such as my guitar playing, are affected. It takes a greater degree of preparation, as well as planning of medications, to get something like this accomplished.

Well, I was into the fifth or sixth song, and doing an impression of Elvis, something for which I have been known throughout my life, when I was interrupted. To be clear, this was fat, old Elvis, sitting on a mobility scooter, since that was the most comfortable chair I could find in this massive and modern hospital! So picture a big guy with a black acoustic guitar, sitting on a mobility scooter and singing into a microphone. I was performing, Blue Suede Shoes, and had just gotten finished with the blues solo part of the song and there, from out of the crowd of 200 people assembling in the auditorium, I heard, "turn it down!" This individual was a man about five or six years older than myself, and appeared to be a patient, based on a general view of his expression and body language. He persisted and I attempted to keep singing as he yelled again, "Turn it down!"

As a musician, in the middle of a performance, you typically allow the sound booth engineer to manage any needed changes in volume or the graphic equalization (EQ) mix that may need adjusting. So, I kept right on and starting singing in Elvis' voice, the second verse, which incidentally, says:

"You can knock me down, step on my face, slander my name all over the place. Say anything, that you want to say, but uh-hu honey lay off of my shoes-- don't you, step on my blue suede shoes!"

I guess you could say the lyric was inviting trouble, giving the green light to do anything to me except stepping on my very oddly colored shoes! This gentleman, fighting his anxious tendencies and his reaction to a rock 'n roll performance by a solo acoustic guitar player, could not resist coming to the front! He virtually charged to the front, all the while a crowd of 200 very controlled and focused conference attenders, watched in a wide-eyed stare.

Once he was at the front of the room, my new partner, or music critic, depending on your vantage point, continued to rail on my sound mix. He yelled from a few short feet in front of me, "TURN IT DOWN. TURN IT DOWN. WHAT IS WRONG WITH YOU?" I actually reached for my guitar controls and quickly flipped the dial to a lower setting and kept entertaining my crowd. This was starting to seem like a gig I once had at an Italian Restaurant lounge in Long Beach at he age of 18. I have been told to turn it down a few times in my life and generally took it with a grain of salt, but this time, I considered the circumstances and felt a bit of compassion for this fellow.

My compassion soon turned to anxiety and anger. He left the front, thinking, "I told him!" and went back to his seat. Thirty seconds later, he was back up in front, sloshing a full cup of scalding hot coffee from side to side, this time ordering me to "turn it down (or else)."

I am human, so I will admit that I then told him I had turned down the system and I would appreciate it if he would stop the violent behavior. He did not and I turned to logic. I gently but firmly stated in the microphone, "Security-- I need security up here!" I kept right on playing my black, Al Di Meola Ovation Acoustic Electric guitar, and hoped for the arrival of a savior, dressed in a semi-law-enforcement-styled uniform. No one fitting that description ever came, but the very caring and dedicated conference organizer and leader did show up in time to reassure me of my pleasing performance. This affirmation, and urging to continue playing, followed my comment that included the phrase, "I may just tremor myself right out of here." You see, I have parkinsonism, too. This yelling attack and physical molestation of my space to perform had led to a rapid and rhythmic tremor of my entire body, something that occurs when anxiety is peaked.

This was a very interesting collision between the nerves and anxious reactions of a Parkinson's Disease patient in "freak-out mode" and a sincere over-the-hill musician, with scarcely a gig of late, let alone one that provided an audience of up to 300 people! This was a chance to sell CD's and books, and the audience was surely likely to be supportive and sympathetic. Who would have expected that my show could induce an angry, disturbing reaction?

Looking back, I can say, what else would one expect? A Parkinson's Plus patient doing an Elvis impression over a slightly too loud PA system, for an audience including a gentleman who undoubtedly has a strong aversion to loud sounds (something he doesn't appear to mind making himself, however).

Well, it is worthy of a smile, or maybe even a big belly laugh. Are you ready? "One for the money, two for the show..." Start laughing, NOW!

They say it is therapeutic to have a big, knee slapping belly laugh now and then.

You can make the best of anything if you will let yourself. Thanks to my email friend, who by giving me a different perspective on this incident, helped me realize that today. -- Dan

Life Goes On In Spite of Parkinson's Plus Syndrome

We had a great conference on Saturday at Cedars-Sinai Medical Center. I was thrilled to be able entertain the crowd with my songs between speakers. Not that it wasn't a great challenge physically, but it was worth the effort. We were able to make contact with many patients and caregivers.

My neck is very sore these last several days. I have been having trouble turning my head to the right, increasingly since the auto accident two years ago. In recent weeks, this difficulty has joined forces with the neck dystonia to make it hard to see what is on my right while driver my scooter. I am not able to see who is on my right when we are in public in places like a store or at church.

The pain that cramps my neck reached its most severe degree last night. I was literally not able to lay down but had to sleep sitting up. The herniated discs in my neck made the twisting and cramping of my neck muscles lead to a tightening of my face muscles as well. It was excruciating.

I am very much looking forward to the release of my new album. The song, Through Your Eyes, which is available to hear on my new Dan Brooks music website, speaks of my experience with a Parkinson's Plus disorder. "I'm sitting here wondering what to say, Sitting here wondering what to do," are the opening phrases that indicate I am in a crisis and just don't know how to react. When I am in such a state, sometimes I write! Writing gives me an opportunity to express deep feelings and maybe you are able to relate to me as a patient and/or caregiver.

I am here to discuss any such issues you may face with a neuro-degenerative disease or another kind of challenge. Challenges and difficulties are part of life, not mere interruptions. The best we can do in such times is to live in the moment and find the good that may result. As John Lennon said, "Life is what happens while you are making other plans."

There are blessings to be found even when walking troubles, tremors, swallowing problems and slowed cognition are pounding your body and mind in a way you never expected. Even with a very stiff and painful neck, I am able to say the sun does still shine, today.

Thanks for being a friend who reads and listens. I appreciate you. -- Dan

New Website for Dan's Music

I have begun a new blog to go with my new album. This website is not intended to replace We Will Go On, which I write as a focus on Atypical Parkinsonian Disorders and my experience with the resulting challenges. The new site (visit it here: Dan Brooks Music) is focused on my music and my newest album, Curtain Call. If you are interested in my music, or are a guitarist, or you simply love music focused on faith and love, you will want to come on over and check out my new pages. Thanks for stopping by We Will Go On and I invite you to visit: Dan Brooks Music.

Parkinson's and Atypical Patients' Conference at Cedars-Sinai Sat., October 17

I want to make any of you in or near the Southern California area this weekend ahead aware of a great conference opportunity. Some of the biggest names in the medical field who diagnose and treat these movement disorders will be speaking for the participants. Also, I am bringing my guitar and singing some songs during the gathering/registration time and at the break between sessions.

Here are some of the details:

Saturday, 10/17/2009 - 12:30 PM at Cedars-Sinai Medical Center, Beverly Hills, California 90048

Cost: Free

Agenda: The conference will begin with a review of Parkinson's disease and atypical Parkinson disease symptoms, how a diagnosis is determined and the differences in treatment options. This will be followed by a presentation on how neurologic music therapy can help in the management of Parkinson's symptoms. The information will focus specifically on how rhythm improves mobility, speech, language, and cognitive skills related to Parkinson's disease.The conference will conclude with two presentations related to maintaining emotional and spiritual wellbeing with a focus on the mind/body connection.

Speakers:


1:15 p.m.
Parkinson's Disease and its many mimics: Basics of evaluation and treatment Nicholas Szumski, MD, FRCP

2:15 p.m
Neurologic Music Therapy for Parkinson's Disease - Peggy Schaefer, MT-BC, Neurologic Music Therapist Fellow

3:00 p.m.
BreakLight refreshments will be served

3:15 p.m.
Coping with the Challenges of Parkinson's - Laughter for Health Laughter: Yoga Institute

4:00 p.m.
A Caregiver's Emotional and Spirtual Journey with Atypical Parkinson's Disease - Loretta Mazorra, RN, MN, MA

(note: I will be singing at Cedars-Sinai Medical Center in the Harvey Morse Auditorium for the Annual Parkinson’s Disease Conference. I will sing at 12:30 and 3 p.m.)

The Theme for this year: Parkinson’s Disease: Caring for the Body, Nurturing the Spirit.

Register by calling 1-800-CEDARS-1 or visit: www.cedars-sinai.edu/parkinsonconference.

You would benefit greatly if you are a patient or caregiver facing the difficulties of an Atypical Parkinsonian Disorder, Parkinson's Disease or Dystonia. Hope to see you there!

New Album Strikes a Chord in Me

As a high school senior, I was seriously intending to make an attempt at music as a career. I began to write songs and perform seriously by the age of 17 years. My career goals began to change as I recognized the natural interest I had in teaching and leading young people.

I cut my teeth in the education profession in 1976 as a teacher's assistant in Long Beach, when a close friend named Jerry helped me get hired part time working in a sixth grade class in a lower-economic, urban elementary school. This work was really engrossing and gave me a sense of calling that teaching was where I belonged.

Though I went on to study education and invested my life in a thirty-year career that led to my being a Principal and eventually, Assistant Superintendent, there was never a time that I stopped writing and performing music. Usually this took the form of my singing a solo prior to the minister's sermon or an extended period of time leading songs in a church setting.

I started out singing with my dad, then with friends in garage bands, and eventually I was soloing as an impressionist doing Elvis, the Bee Gees (pre-disco!) and Ed Sullivan. This act was my ticket in the door for a number of gigs in restaurants, banquets, Christmas parties and church camps for youth. By 17 I was writing my own gospel rock songs, something I still find time for today. My writing of today will also include love songs and songs about the human experience of jubilation, loss or descriptive lyrics about learning through trials.

My first album was the fulfillment of a dream long unfulfilled when at the age of 40, and while serving as a public schools principal at a Visual and Performing Arts Magnet School, called Butterfield School of the Arts, I wrote and recorded "A Long Time Comin'". This album contained 11 original songs written over a span of twenty years, and included both new material and some of the classic songs I had written and performed in churches and church related settings since the early seventies!

Album number two was released three-and-a-half years ago, after learning that the tremors and balance difficulties I was experiencing were the result of a neuro-degenerative syndrome called Parkinson's Plus. In particular, "I Will Go On" (the album) was focused on this very personal struggle and how it caused me to explore the things that really mattered to me as I was forced to retire due to disability. This was an acoustic album and was supported by our local fellowship, Magnolia Presbyterian Church, and my regional management organization. Both of these groups supported the project and their participation added to my motivation to take the production all the way to the finish line.

At that time, in 2006, I was beginning to notice the effect of the disease on my hands and voice, as I did the things I had done since I was a boy, playing the guitar and singing with my father. Here I was at 51 and doing what I perceived as my last recording!

Soon after the completion of this acoustic-solo album, my family and friends began to talk to me about doing a studio album, which would include a full band on most of the songs. Each person I discussed this with wanted to see me write some new material and take the time to lay it down in the studio with a greater investment of time and creativity. This is exactly what we did, as Karrie, my wife, agreed that this would be possible to undertake.

In October of 2007, another friend, who had put together a recording studio in the previous couple of years, began to have me record my vocal and acoustic guitar tracks for the new project! Looking back, I am very thankful I was able to get most of my own performance "in the can" before my illness affected my dexterity or vocal range as much as it has gradually done over the ensueing two years.

Today, we are on the threshold of a brand new studio album called, "Curtain Call." The title is taken from a song on the album named, "One More Curtain Call," the words to which indicate there were still some songs left in me that I had to get out. This album gives me that opportunity.

We have twelve tracks in all and it turns out that taking the two years to get the project completed in the right way is really going to pay big dividends. I feel something really good is about to happen with this record of my current musical styles and skills. Ironically, I have honed these skills in the empty hours brought on by the loss of my career, which I then filled with music and the writing of my book.

I believe that this is the best song writing I have done to date and I am very excited about the performance of my fellow musicians on this album. Evan Lo plays bass guitar throughout, while my brother, Matt Brooks, plays expert lead guitar parts on three of the songs, including "The Hope that Lasts," "When God Dipped His Pen" and a National Reso-phonic Slide part on the traditional "The Reason." Our engineer and studio owner, Mike Bouska, played some rhythm electric guitar along with adding percussion and Rhodes Piano on a few of the cuts. Finally, my son, Mark, played the drums, his signature instrument, and also provided most of the keyboards, synthesizer-strings, sang backing vocals and played percussion instruments. He is masterful on this album.

Other contributions include Mark's graphic arts and cover layout work, talents he developed while working on his own band's albums and those of other musicians who engaged him for similar work. Stephen, our youngest son and a college art student, drew a portrait of me for the cover and took the photos that are used on the album packaging. I am very proud of the professional manner in which the visual aspects of this album are coming together.

Tonight, as I write this, our album is in the final stages of production, the Mastering. We are fortunate to have the body of this work being Mastered for optimal sound production by Bernie Becker studios, where artists such as Neil Diamond have also taken their projects for ultimate refinement after the complete recordings are mixed and ready to take to Compact Disc.

Why another album? As I mentioned, there was a desire on my part and the part of family and friends to do one more project that would have my best performance possible, along with the investment of talented people and the best technologies that are now available in our exciting era of personal computers. I have really enjoyed the experience of working with the cutting edge software, hardware and music technologies that are available today.

I am eager to get this album into your hands so that you may be able to identify with me as I express the joys that life brings, along with the deep disappointments that we all live at times. These feelings are often best expressed in songs. You will be inspired and encouraged by this music and I know you will enjoy its entertaining aspects.

This album has some rock and roll tunes, some pretty ballads and some finger-style acoustic numbers that allow me to stretch my guitar playing techniques. The instrumentation and vocals performances are distinct and as you listen, you will find that there are a number of interesting things to lock in on and listen to, while you focus on a voice in one sitting and the electric guitar in another. Still other times you will reflect on the slide of a bow on the strings of a cello, while you will also enjoy the grand piano that my son, Mark, sensitively plays to bring out the best in several of my songs.

We are looking at early to mid-October, so this album will be ready for Christmas. The bottom line is, my situation, the diagnosis of Parkinson's Plus, has brought out some songs in me that I would not have written and recorded, otherwise. Listen to my new album and you will identify with the overcoming love of God that has brought me strength as I have faced the greatest difficutly of my life. I believe that your faith will be encouraged and your spirit lifted as you hear my honest lyrics that express the hope that only faith in a gracious God brings. -- Best to you all, Dan

"Curtain Call," by Dan Brooks, available on CD Baby and other internet outlets in November 2oo9. For a sample, Through Your Eyes, see the ReverbNation player in the right margin of this site.

Patient Shares MSA through Video

The above video is one in a series of three. This individual, Sami, has probable MSA and as such, has much in common with me and other patients. She was brave enough to create some short video footage that gives others a chance to see and understand what is going on with her mind and body. I thank her and applaud her for sharing and for giving others such an opportunity to be enlightened.

I know your comments left here or on her You Tube page would be greatly appreciated. -- Dan