FURTHER ON: with Atypical Parkinsonism Book Release Announcement

It's finally here! The writing, the editing, the layout, the cover, the illustrations and the printing-- it is a long process but very rewarding! Now the fun part is here. Our book is available, initially in electronic form for E-Readers such as Kindle and Nook, and within hours/days the print versions, both paperback and hardbound will be available. You can buy the e-book right now at Amazon, Barnes and Noble, Apple Books, and several others as we speak. Here are links: AMAZON NOOK Apple Books Here is the write up posted with the book on sites: This moving and intimate memoir reflects on Dan R. Brooks's long battle with a rare, atypical parkinsonism syndrome. It discusses the details of his condition, how it affects his daily living, the changes he has gone through, the amazing efforts his wife and caregiver make to care for him, the impact and support of his family, and the spiritual journey it has taken him through. He speaks of a life with a growing disability and the choices he's had to make as he lives life to the fullest each day, even while in decline and more and more homebound. It is an honest look at how a degenerative brain disease is defined and affects an individual and a family. The memoir is about moving further along in life, knowing that we aren't promised tomorrow, but that we can live today like we will never die. It encourages a strong sense of hope in the midst of struggle against a terrible disease, giving inspiration to keep moving forward to make the most of a life with purpose. Highly recommended for patients looking for hope and inspiration in going through a chronic or fatal illness, and for the families, friends, and caregivers of people with neurological diseases such as atypical parkinsonism syndromes, Parkinson's Disease, Alzheimer's, ALS, FTD, and LBD. Thanks for all you support! Dan

Strange Days: Adjusting to Decline with Family Support

What with both Multiple System Atrophy and Corticobasal Syndrome symptoms occurring simultaneously, I am learning to adjust to the the changes.  I find a need for scooting around in my transport wheelchair more these days.  I just take the footrests off of the chair and I can move around the house pretty well.  The great thing about the smaller transfer chair is it does not have the large wheels so it is narrower and fits through hall ways and doorways entering the restroom and bedrooms.  I can spend hours in this transport chair and it is quite comfortable.

I want you to know that I have closed my Facebook account because I don't want to support a company that is not forthcoming about sharing our personal information with business partners, let alone political campaigns.  (I changed my mind about this and reversed the process of closing the account).

Nevertheless, since I won't be on social media, I will be writing more often on this blog to communicate with you that stay in touch with me.

I am having a difficult time understanding why I have the cognitive behavioral dysfunctions that accompany CBS/FTD.  Corticobasal Syndrome is a part of the broader neurodegenerative disease known as Frontotemporal Degeneration.  I take Namenda to slow the progression of dementia that is associated with CBS.

Karrie is so helpful and understanding.  We are focusing on family and friends.  We appreciate the support of our adult kids, their wonderful spouses and their beautiful children.  It is a tight group!

The local Parkinson's Support group is a great place to share with patients and caregivers.  Online, we stay in touch through CurePSP "go to meeting" groups.

And, of course, our Church is a great support and a caring family.

This is Multiple System Atrophy Awareness month and we encourage you to get involved.  Thanks for stopping by! -- Patient-Online

Song: Through Your Eyes - World Looks Different with PD Plus

We lost our mother, Marguerite, suddenly, a week ago today.  She was an amazing 84 and still going strong.

If you watch on You Tube, you know you can click the CC (closed caption symbol) in the margin at the bottom of player, and you will be able to read the lyrics I have written in this song.  -- Patient-Online

San Diego Choir for Parkinson's Patients; M. Streep Speaks Up for Disabilities

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.