Book Cover Design FURTHER ALONG

Just to give you a taste of my book, this cover gives you a feel. The professional artwork was done by our son, Stephen, who is a full time Visual Designer. Content wise, you will have the chance to read about my near death experience with a breathing emergency that resulted in my trach and feeding tubes, permanently implanted. Also, I describe my time as a patient in a nursing home and what that was like. I talk about overcoming difficulties and how to face trials with determination, love of family and friends and the hope that comes from faith. It should be available in softback, hardback and e-reader form in the next several weeks.

Health Care Vote Risks Health and Security of Disabled

Simply "repeal and replace". How simple.  How easily that rolls off the tongue.  Unfortunately, it reveals the insincerity of the purpose of the American Health Care Act (Current repeal and replace health bill in the house).  The President demonstrates over and over how little he understands the Affordable Care Act and the people who benefit from it.  He has never lived in the the trenches of every day life and has no knowledge what health care does for disabled people such as myself. This is the same man that mimicked a person with postures of limbs and movements somewhat like my own.  It is one thing to insult a sick man: it is another to presume to take the insurance coverage from a disabled man and his wife.

What is the Affordable Care Act?  While not literally defining or describing the details of the ACA, I am referring to the general nature of what is called Obama Care.  Obama Care was a first step toward making health insurance more affordable and more accessible.  It is a very important step in that direction, but it was hampered by changes suggested by conservatives and insisted upon by their members.  Though they gave that input and prevented this law from going as far as it needed to in providing better health care at a reduced cost, it was passed by the democrats with virtually no affirmative votes by GOP members.

The Affordable Care act is not health care.  It is a law which provides rules to govern health insurance and puts constraints on insurance companies that prevent them from providing too little coverage for the money spent by the consumer.  The ACA made sure women were able to have annual well care visits and mammograms, including labs, at no cost (provided by health insurance paid for by the consumer).

My wife, who cares for me as a permanently disabled person with a degenerative brain disease, lost access to health coverage when I was declared 100% disabled.  She has been forced to buy private insurance out of her pocket for the last 10 years.  She knows what the exchanges are about better than 90% of the politicians who speaks so negatively about them.  The Affordable Care Act is not in a death spiral--that is a marketing statement made up by politicians to plant the seeds of fear and doubt in the minds of everyday Americans. The Affordable Care Act is simply not a perfect law because it is not a single payer medical program that covers every American.  Obama care is a market-driven, pro-business health insurance law that requires insurance companies to give their customers something for their money.  It keeps them from denying coverage for Americans like my spouse who has conditions that they could deny her coverage for if she wanted to choose another vendor to buy from.  Women can't be charged more than their same age counterparts, as was historically customary.  It removed life-time caps on dollars spent per person that would cause financial crisis for seriously ill individuals with heart disease, diabetes, cancer or brain disorders such as mine.

"Repeal and Replace" gives the appearance of making Trumps' promises about health care come to pass. The truth is, he also said all people would have access to a lower cost, better product that gave each American better medical care.  The American Health Care Act (the Repeal and Replace bill) does not accomplish anything near that.  By their own admission, Republican members are asking their colleagues to first pass this bill, and then it would require a second and third bill to come forth to fix the problems it causes when implemented!

My coverage through Medicare is something I can count on.  This new legislation would increase my costs dramatically, I am told.   I am enrolled in a Medicare Advantage Plan that was put in place by President Bush and has been a very successful program.  This "repeal and replace" health care legislation threatens to undo that success from the Bush Presidency that was strengthened and continued by the Obama administration.

President Trump doesn't seem to understand what "repeal and replace" means.  He simply likes winning.  Winning for him means a big loss for regular people who have to actually pay for medical care that could cause a great financial loss.  We are very nervous.  But then, a man who makes fun of disabled people wouldn't probably understand that issue.  I mean that literally, not as a cheap shot.

Urge your congress person to vote "No" on this American Health Care Act. As always, I welcome your input and responses. -- Patient-Online

My wife deserves health care despite the loss of my career
and benefits due to a health crisis in my life. 

Changes are Gradual in Some Cases of MSA

I am one of the fortunate ones.  I am still here! Some develop Multiple System Atrophy and they are only able to live a few years.  This grieves me to lose friends who are diagnosed and immediately are incapacitated and go down hill.  I am more typical,with a course of greater than 10 years.  This a great advantage for me to live to the fullest for the time I have in this beautiful life.  When I was diagnosed ten years ago, I was concerned that aspiration pneumonia, bladder infections, heart rate issue, falling or breathing difficulty, all of which I deal with daily, will be what I succumb to in the first 7 or 8 years.

This would not be the case, a fact about which I credit my fitness as an athlete when I was a younger man, my maintaining my abilities through singing and playing instruments, the time I spend writing and communicating, and having a very effective caregiver in my home.  Of course, I am speaking of my lovely wife who also cares for my medical needs, such as my administration of medications. Finally, I know Deep Brain Stimulation surgery has helped lengthen my life and improved some of my symptomatic issues. 

I am still here and I am full of joy for life.  I didn't know if I would make it this far, but now I feel that there is so much to do as a grandfather, husband, dad, musician, church member, friend and participant in support groups.  Thanks for your support and prayers through the years! -- Dan

My Son Mark and I Performing at Church in 2015

Pain in MSA

Pain is a part of Multiple System Atrophy.  Does that come as a surprise?  The same is true of Parkinson's Disease.  I have stiffness in my arms, legs, feet and hands.  My neck is moving downward, slowly, over the years growing closer to my chest.  When I walk I feel the stiffness and cramping of my neck and upper back as my shoulders and head pull down involuntarily. The medicine Gabapentin is a big help in treating pain.  It relieves nerve pain, which is generated by the rigidity of parkinsonism that is a part of MSA. 

Dystonia is a related condition that causes involuntary contractions, postures and tremors, such as my head which bobs or shakes most of the day and night.  My Deep Brain Implants and generator work together to reduce some of this stiffness and twisting movements, along with the Sinemet which is a wonder drug that is a must for all Parkinson's patients, along with PSP and MSA patients who have Parkinsonian issues along with their central symptom issues.  So, yes, pain is an issue and those who care for MSA victims need to know this and keep it in mind at all times.  In closing, thank you to my spouse, Karrie, and all caregivers that make such a difference in alleviating pain and in lengthening our lives!  -- Dan