I'm Back to Blogging After Kidney Cancer Surgery

Dear Friends, I know you may have been wondering why I have not written an entry in nearly two years. I have gone through so much, as we all do. This road is a tough and lonely one. The combination of multiple system atrophy and corticobasal syndrome are enough with the added challenges of the tracheostomy and feeding tube. The COVID 19 pandemic was a huge inconvenience for all of us, and for many, it meant the terrible loss of family members and friends. I found myself becoming quite inward and the progression of my disease, with the autonomic dysfunctions and increasing immobility, were weighing down my spirit. I became more and more convinced my days were getting shorter on this earth. When my lifelong friend, the Rev. Dr. Jay Bartow, who had been my pastor in high school, passed away in the winter of 2022, I was left with the feeling of great disappointment and sadness. Somehow, we had to find a way to go on. Thankfulness and looking for the good that can be found in each day are two avenues to pursue when times get darkest. You may relate to this kind of experience. 

Then, in the early spring of 2023, my G-tube was creating problems in my stomach. It began to fester and I felt pain. Just the weight of it hanging from my abdomen was painful and I knew, once again, something was up with it. Karrie checked to see if I could get in to see my gastroenterologist, and the conclusion was that this couldn't wait. We were directed to go directly to the emergency room.

While there in the emergency room, the doctor was able to determine that my G-tube would need to be removed and replaced. A CT with contrast dye was conducted to get a view of the state of the balloon holding my feeding tube in place. From this imaging, the problem was understood and the tube was removed and replaced. The pain subsided and the doctor approached us to discuss the conclusions he had drawn. Then, the next shoe dropped. He said, "Some masses were observed in your left kidney and your liver. You should follow up and see what your doctor recommends for you to do next." 

We made an appointment and it was determined by the gastroenterologist that I should have another CT scan of these masses. It was scheduled and conducted within the next month. The results were read and the gastroenterologist explained, "The liver mass is stable for now, and we will recheck it. This kidney mass is concerning for cancer." "I recommend you see your urologist right away." 

We were able to get in to see the urologist within a few days and he reviewed the resulting scans on the computer. The mass had grown and his impression was definitive. "This is likely a cancerous mass and needs to be removed. It is buried deeply in the center of your left kidney and therefore it won't be possible to remove it by doing a partial nephrectomy." He indicated that the entire kidney would need to be removed. This procedure is called a radical nephrectomy. 

I subsequently I had the surgery on June 13, 2023. All went well and required a 6-day stay in the critical care unit of the hospital. Special provisions had to be made for me due to my liquid G-tube feedings and the need to be hooked up to a ventilator each night as I slept (I sleep with a high tech ventilator each night at home as it is required to prevent sudden respiratory failure while sleeping). I was discharged the night before my 68th birthday. We received much support from our sons and their families. The guys, Daniel, Mark, and Stephen all spent time at the hospital. What a blessing they were! Karrie needed that support and it made all the difference. Karrie came each day from the beginning of visiting hours until they tossed her out at the end of the visitation time allowance. 

 The pathology report did come back and the conclusion was that the mass was indeed kidney cancer, stage 3, and that it had been removed with no spread apparent in the region. I was relieved that the margins appeared to be clear. Thanks be to God!  

I returned to the urologist, who had conducted my surgery, and my staples were removed from the center-line of my abdomen. It became apparent fairly quickly that something wasn't right. Our urologist urged, "You will need to go to emergency directly. I need to get you into surgery today." My wound had opened up without the restraint of the staples and began to allow my intestines to protrude out of my body. This was undoubtedly the result of the much coughing I have to do on an ongoing basis to clear my trach opening that gets clogged with fluids. It was impossible to avoid the strain this coughing and clearing had put on my surgical wound. The condition of my open wound was more dangerous that I realized at the time, but I felt calm and had trust that God would guide my surgeon and the team to get things straightened out. 

Karrie bears a great deal of responsibility. This was weighing heavily on her mind and her thought process "wheels were turning". She knew as she drove me to the emergency room that this was serious business! It didn't take more than 2-3 hours for me to be an operating room again. All of my insides and affected areas were washed with sterile water and antibiotics. My organs were rearranged, for a lack of a better way to describe it, and I was once again closed up. Special care was taken to get the area carefully stapled and sutured. I must give much credit to this wonderfully dedicated physician who took such care to be sure I did not get an infection or have another problem with the healing of this incision. I stayed in the hospital 2 more days. 

Now, 7 weeks have passed and I have seen all the pain subside. The wound has healed well and I am feeling back to my normal "abnormal." Once again I am filled with gratitude for Karrie, who cared for me as any nurse would have so well. Our sons and their families were there between these two surgeries to celebrate my birthday all gathered around my bed. All 14 of us were together and the love was palpable! I can't help but be filled with gratitude for the goodness of our family and the professionalism of our doctors, hospital staff, home health nurses who visited and the physical therapists who provided exercise to get me to the point where I could get out of bed after a week at home. 

At this point, I am going to need to be more conscious of my single right kidney. It will need to be babied and paid close attention to in order to keep its function effective and healthy. The cancer does not appear to be present for the time being. This too will be carefully monitored for a number of years. I feel confident that it is gone. Just added concerns to accompany those Karrie and I are contending with due to multiple system atrophy and corticobasal syndrome. 

I have renewed interest in communicating and sharing those things I am able to through this blog. I intend to keep it up and I hope you will again be a regular reader. Please feel free to write to me below or to my email me at danstune@aol.com. I would love to hear from you and receive your questions and feedback. -- Dan

Replacing Trach with Cuffed Version

I am being scheduled to have my smooth trach tube replaced in mid March with a cuffed version.  This will allow me to be able to have a ventilator at night while I am sleeping. As a result of my brain degeneration, my diaphragm is not fully functional and has reduced my lung capacity.  This is progressive so the ventilator will ensure that when my body is slowed down during sleep that I continue to receive enough oxygen.  It has an inflatable ring inside my windpipe that will seal the trach so that I get a tight fit and 100% positive airflow.  That will mean I will have no speech during the night.  Karrie can deflate it for me in the morning so that I may speak.  Thanks for your prayers. If anyone has experience with this trach type, please write to encourage me in this process.  Thank you friends! 

Singing with a Tracheostomy

Hi Friends,  I didn’t think I could sing with a tracheostomy.  I have a Passy Muir speaking valve, which allows air in through my tracheostomy, but to exhale it travels past my vocal chords.  Without this I cannot sing, where with it I can sing a bit. Here is my rendition of “Give Me Jesus” by Fernando Ortega. This is my first performance since having a “Trach” put it in.  The tracheostomy results from occasional vocal chord paralysis.  Also, my swallowing problem causes food and drinks to slip into my lungs, so now I eat through a tube in my stomach.  These conditions result from Multiple System Atrophy, an Atypical Parkinsonism disease.   Here is the video.  Dan Brooks

To hear more of my videos go to You Tube at “Danstune’s Channel.”

Where Does the MSA, PSP or CBD patient fit?

Karrie looks out over the Back Bay in Los Osos.  Without her I would not be able to live at home.

I have been an outlier for years.  It is the nature of the beast.  I have an Atypical Parkinsonian Disorder, namely Corticobasal Syndrome with Multiple System Atrophy.  These syndromes are so similar to one another that they can be paired in my brain, and are hard to tell a part in another case where it would be considered one or the other.  On this site I have defined and summarized these syndromes, so this post will not consider those questions.

The issue I am discussing today is support. Support groups are a major factor in seeking support and education in a group where trust is established and fostered by the leaders and group members at large.

Let's take a few minutes and step back to look at my diagnostic history.  Those who have kept up with this blog are aware that "Dr. N" was my original neurologist who diagnosed me with a Parkinson's Plus disorder.  He conducted tests and examined me, concluding that what I had was "So much more than Parkinson's Disease."  That was in February 2006.  He said Progressive Supranuclear Palsy or Shy Drager were the likely diagnoses.  Over the years he sharpened the focus somewhat, but eventually he decided my case was unique enough that Parkinson's Plus was the most closely defined he could confidently label my case.  In 2012, Dr. N referred me to "Dr. S", who conducted Deep Brain Stimulation Brain Surgery in order to make two implants in my brain and one in my chest.  This treatment, though risky and hard to undergo, was a success in the way it has increased my overall health, lengthening my life.  This surgery was not a cure and is still benefiting me, though less and less over time.

Three years ago, I was fortunate to be referred to neurology at a respected clinic near our home and I was paired with a movement disorder specialist.  She ran tests, including DAT and PET scans, along with video taping my condition as I walked, moved my limbs and eyes.  She spent a great deal of time with us and we also met with a team of doctors who entered the exam room and contributed their opinions.

"Dr. M" determined that what I have is Corticobasal Syndrome with Multiple System Atrophy.  I have a very long list of symptoms, which, again, are well covered on this blog other places.  Among those symptoms are several movement issues that fall under the description of parkinsonism.  Parkinsonism describes symptoms that are found in Parkinson's Disease-- walking trouble, shaking, balance problems and slow movements.  Because I have parkinsonism, along with autonomic disorders, fronto temporal issues, neurologically based eye aiming struggles and swallowing issues that cause pneumonia, I have always tended to gather with Parkinson's Disease patients. Parkinson's Disease affects 1% of the population over 60 years old.  Atypical parkinsonian syndromes are rare and only represent 3% of the total Parkinson's Disease population.  The size of the group that is represented by PD means that there are Support Groups available in great prevalence.

Karrie and I were attending a Parkinson's Disease support group in Orange County as early as January 2006.  We enjoyed that group for a year and were recruited by the Riverside Parkinson's Support Group in November 2006.  We joined that group, stating from the beginning that I had a different disorder that shared some of the same symptoms.  We have developed many friendships in the RPSG over these 12-plus years, and Karrie and I led the group for most of four years between 2007-2011.  After all this time, it has become clear that my Atypical Parkinsonian disorder is not relevant enough to the needs of the patients, caregivers and leaders that are found in that group.  We love and care for these folks and their leaders, but feel that it is best that we not attend the sessions knowing that my diseases, which have some overlap with Parkinson's but are arguably faster progressing and more life threatening in the immediate sense, are frightening to the general group.

This Support Group issue is not peculiar to me, but is a universal problem that needs to be addressed by the Movement Disorder and Neurodegenerative Brain Disease community.  I have been fortunate to be welcomed and cared for by the Orange County group we initially joined, and grateful for all the years that we attended and supported the Riverside group.  We have been involved in online groups concurrently such as CurePSP, MSA Coalition, Brain Support Network, and a number of other organizations.  With these, we have had the chance to participate in online chats, but no face to face meetings.  There was a movement that Vera James, and Lorreta Mazorra provided leadership for as groups were gathered in Los Angeles at UCLA and in Orange County at UCI.  Robin Riddle of the Brain Support Network has organized an atypical parkinsonian syndrome support group in the San Francisco Bay area and she has made a number of us outside of that region honorary members.

I couldn't be more thankful to have had the opportunity to know so many of the people in these groups and so many have unselfishly listened, provided resources and taken time to voluntarily support families like ours, with a rare disease that overlaps somewhat with Parkinson's.

The point of this post is that those of us with Corticobasal Syndrome, Multiple System Atrophy, Progressive Supranuclear Palsy and Lewy Body Dementia are not frequently able to find a group in which we fit.  Typically, it is helpful if the Parkinson's Disease Support groups are able to recognize the reality that a small but important percentage of the PD support group participants will eventually be diagnosed with an atypical parkinsonian disorder.  It is because of this fact, that years ago I would lead discussions at the Riverside PSG in order to inform the patients, caregivers and their families about the signs of such a diagnosis so they would be able to recognize the onset of such a syndrome.

I am an outlier as a patient that does not specifically have Parkinson's Disease. There are people throughout the US and across the world that have this same distinction.  All of us could need support groups, if we choose to avail ourselves of them. I am advocating for more atypical parkinsonian groups to be formed within a reasonable driving distance so that patients and caregivers are able to support each other and learn from one another's experiences. When this can't be accomplished, Parkinson's Disease groups need to be better informed about the facts concerning MSA, CBS, PSP, and LBD and open their doors to theses conditions.  All atypical parkinsonian patients will benefit, as will Parkinson's Disease patients and their families.  -- Patient-Online

Corticobasal Syndrome Explained in Simple Terms

2 Corinthians 12:9 New International Version (NIV)

⁹ But he said to me, “My grace is sufficient for you, for my power is made perfect in weakness.” Therefore I will boast all the more gladly about my weaknesses, so that Christ’s power may rest on me.

I have Corticobasal Syndrome or C.B.S.  Formerly, this would have been named Corticobasal Ganglionic Degeneration or C.B.G.D.  Today, Corticobasal Syndrome is the handle given to this illness during the life of the patient because it has to be confirmed pathologically (with an autopsy of the brain tissue) after the passing of the patient.  All Parkinson's Plus Syndromes, Multiple System Atrophy,  Progressive Supranuclear Palsy, Lewy Body Dementia and Corticobasal Syndrome are not diagnosed, absolutely, until a brain study can be completed.  The diagnosis is called "probable" or "possible" during the life of the patient.

So, after 11 years of treatment for Parkinson's Plus-- thought to be probably Multiple System Atrophy (MSA), it has been determined that I do have M.S.A. and also Corticobasal Syndrome.  The reasons are that I have the movement disorder and cognitive symptoms of C.B.S., but I also have the neurologically caused autonomic failure of M.S.A.  I have explained this autonomic failure on this blog before and you can refer back to it in my pages above, the links to previous posts to the right or by reading my book, I Will Go On: Living with a Movement Disorder.  In this post, I will now explain the basics of Coriticobasal Syndrome.


Overview of Corticobasal Syndrome

Corticobasal Syndrome is a movement disorder that is similar to Parkinson's Disease, though faster progressing and includes additional symptomatic issues that are more complicated earlier in the disease process than in Parkinson's Disease.  Parkinson's Disease is similar because it has symptoms known as parkinsonism, which include: 1) tremor, 2)balance problems, 3)stiffness and 4)slowness -- all caused by a degeneration of brain neurons.   Because Coriticobasal Syndrome also involves the Basalganglia (movement control center of the brain and is also involved in Parkinson's) some of the symptoms overlap, thus it is a Parkinson's Plus syndrome. 

That is where the similarity stops.  I do not have Parkinson's and I never have.  From the beginning, my neurologist at the time said, "This is so much more than Parkinson's Disease."

It was thought to be either Progressive Supranuclear Palsy or Shy Drager (an earlier name given to the condition now referred to as Multiple System Atrophy).  Progressive Supranuclear Palsy is a close cousin to Coricobasal Syndrome, so we have been in the right arena over this past decade.  The treatment and care given to me were helpful and would have been the same with either designation.  I would have had the Brain Surgery I had in July 2012 and it would have been considered helpful and effective in giving me better movement and more ability to walk with assistance, rather than being in a wheelchair most of the time, as I had been prior to the Deep Brain Stimulation Surgery.

After brain surgery to implant stimulators in two places in my head, with a brain pacemaker in my chest, I was able to resume playing in the church band for several years along with my son, Mark, shown here on the keys. 

What is Corticobasal Syndrome?

Corticobasal Syndrome is a movement disorder that includes walking trouble, tremors/jerky movements, eye control movement impairment, swallowing difficulty, rigidity and balance trouble.  It also causes Cognitive Changes that affect behavior, speech, mood problems and difficulty planning and concentrating.  It is a form of dementia called, Frontotemporal Dementia, but it is not the same disease as other forms of dementia, such as Alzheimer's Disease (A.D.).  It should not be confused with A.D.


What Causes Corticobasal Syndrome?

It is not clear what causes the degenerative process in the brain of individuals with C.B.S., but what we do know is that there is a specific protein in the brain known as Tau that breaks down creating tangles. These tangles destroy nerve pathways and inhibit the ability of the brain to communicate signals that help us move-- whether it be coordinating movements, walking, talking, grasping, swallowing or seeing. 


What is Alien Limb Syndrome?

One of the symptoms of C.B.S. is a phenomena called alien limb syndrome, where a hand, arm, or leg seems to have a mind of its own, assuming postures and movements that seem alien to the patient's awareness.  Also, there are twisted postures of hands, fingers, arms, neck and/or legs/feet.  These movements may also appear in a jerky unpredictable manner, while a form of tremor in some, it may be less regular and random in its form.  Parkinson's Disease typically, when tremor exists (not all Parkinson's patients have a tremors) it is a slow, regularly patterned tremor that occurs generally during rest.


What is a Taupathy?

The illnesses that are caused by the breakdown of the protein Tau, include: Alzheimer's Disease and Progressive Supranuclear Palsy, along with Corticobasal Syndrome.


How is it treated?

C.B.S.  does not have a cure, but there are a number of treatments that may help with symptom relief.  Some of the medicines used for Parkinson's are also given to those with C.B.S., which has been true in my case.  Sinemet is given to help some with rigidity and tremor.  I do receive some benefit from Sinemet.  Other treatments address the cognitive issues and can include medicines used to assist with memory.  Speech therapy can be used to assist with swallowing problems, which has been beneficial in my case.  Swallowing problems have to be combated because they can lead to serious choking and eventual pneumonia.  Falling and gait difficulty require physical therapy and assistive devices such as canes, walkers, wheelchairs and electric scooters.  I use all of the above.  Special lenses may be prescribed to help with the eye movement control problems.  These would be meant to help to prevent double vision.  This eye aiming and movement problem occurs in both Progressive Supranuclear Palsy and Corticobasal Syndrome.  These two syndromes are often confused with one another and a brain study post-mortem is the only way to distinguish which is the correct diagnosis.  Both will show Tau tangles in the brain tissue.


In Summary

Understand that my explanation is from previous study and is by no means a scientific description.  Rather, think of it as a start toward me helping my family and friends gain knowledge about that with which what I am struggling.  I see this as an opportunity to overcome these symptoms and disabling problems to whatever degree is possible through continuing effort and positive forward motion in life.  This is a daily decision and a better choice than sitting down and giving up.  Along with C.B.S., I am fighting the low body temperature regulation problems, the falling blood pressure (orthostatic hypotension), trouble with urination, digestive dysfunction, breathing difficulty, heartbeat irregularities-- all of which are caused by a breaking down of neurons from a different cause than C.B.S.  M.S.A. involves the folding of alpha synuclein protein, rather than Tau tangles.  It is being found that some patients have both proteins causing neurodegeneration.  Diseases aren't fair and don't "leave you alone" because you already struggle with another condition.  There is no rule than you can't get two neurodegenerative diseases. (This link will take you to an article that gives an example of how these two proteins misfolding can work together in the disease process: https://mayoclinic.pure.elsevier.com/en/publications/alpha-synuclein-and-tau-teammates-in-neurodegeneration

Thank you for taking time to read this explanation.  Hopefully, this will help to explain the differences that make my condition an exception to the more common brain illness known as Parkinson's Disease.  Henceforth, I will hope to take part in the effort to bring light to this serious condition known as Corticobasal Syndrome.  I am very thankful for the exceptional Movement Disorder Specialist I am treated by who investigated my brain disease very thoroughly and with all relevant technology and advanced diagnostic techniques.  Special thanks, as always, to my caregiving spouse, Karrie, who loves me and shows such grace and patience in dealing with all of the inabilities and changes that affect her nearly as much as me.  Also, I thank my sons, their spouses and our grandchildren, who are with me frequently, and are helpful and encouraging to me in making the most of every day.  -- Patient-Online

Standing on the Brink of Sharpening Diagnostic Focus

It has been difficult to understand, let alone explain to others.  So many family, friends, contacts and fellow patients are following my story.  I started writing this blog in 2006 and though I took this site down for a year or two, it is out of that same effort that my pursuit for truth continues.

I want to clarify: it has always been clear since February 2006 that I have an Atypical Parkinsonian Disorder.  This much has never been in question.  My original Neurologist made it clear that he thought I had "So much more than Parkinson's Disease" in 2006.  He saw it as Progressive Supranuclear Palsy or Shy Drager ( the synonymous term is Multiple System Atrophy). Now, years down the road the condition has progressed considerably, but my overall strength and heartiness has sustained me.  Well, I am still here, right?

When our great neurologist left our clinic, I was fortunate to be referred by my Primary Care Doctor to a Movement Disorder Specialist in a nearby community.  Since, I have been seeing her every 5-6 weeks.  She has conducted a number of essential tests, including a PET Scan, which showed that I had cell degeneration bilaterally in the basal ganglia, the movement center of the brain.  I have also had a DAT Scan, which indicated degenerative effects in the Frontotemporal area on both the left and right sides of my brain.

To date, my diagnosis continues to include Multiple System Atrophy with Parkinsonism symptoms.  This means I share movement and balance symptoms that Parkinson's Disease patients have and yet so much more.  My eye movements are more and more limited, with my ability to move them up and down and side to side becoming gradually more restricted.  I also have autonomic dysfunction which results from a loss of neurons in the areas of the brain that govern the automatic functions of our bodies:  Urinary, Digestion, Bowel, Swallowing, Breathing, Blood Pressure, Body Temperature and Heart Rate.  These are experienced in a much more severe manner than in typical Parkinson's, although no Parkinson's patient escapes these problems -- the difference is it occurs in the first few years of Multiple System Atrophy and may occur after a decade or more in P.D.

I have had changes in medications to determine what side effects might be influential in my symptoms and have also had blood tests to check for genetic mutations or inherited diseases.  A scope was put up through my nose and down my throat and resulted in the realization that I have a condition gradually paralyzing my vocal chords, which threatens my ability to breath in the long run.  I am aware of the potential of a tracheostomy procedure to make an airway below my vocal box in order to prevent aspiration pneumonia and also to head off the real possibility of breathing obstruction.

I am grateful that I have a committed top neurologist who specializes in patients with rare neurodegenerative diseases, along with Parkinson's Disease.  We will be seeing her again soon and hope to get a sharper focus on what is bringing about these deadly physical threats to my longevity and have stolen my life from me-- career, driving, social life and freedom to walk around in the world.  It isn't that I can't accept the reality, it is more that to have a definitive analysis would be a gift bringing peace to my soul and spirit.  My dear family would know of what I am referring to and share my desire for such clarity. -- Patient-Online

But He knows the way that I take; when He has tested me, I will come forth as gold. -- Job 23:10 (NIV)

Time to Let it Sink in: Coriticobasal Syndrome

I took some time.  All of April to be exact, and then some.  Here it is May and I am thawing out my writing impetus after 5 weeks of writer's block.  After getting a new (November 2016) probable diagnosis of a disorder called Corticobasal Syndrome, a member of the Fronto Temporal Disorder family, I ran out of words to say, or write.

First, of all, I am very grateful to our great doctors-- our primary care doctor at the clinic, the various specialists who treat me for everything from choking/swallowing difficulty to severe eye pain, and up to and including the outstanding Movement Disorder Specialist/Neurologist that is working so hard to  find answers to my rare Parkinsonian disorder.

For years, I wrote on this blog (since 2006 with some breaks) details of my experiences, feelings, faith struggles, spiritual plateaus, and thorough verbal descriptions that defined and categorized all of the various Parkinson's Plus syndromes that I am similar to, if not experiencing.

Let us not become weary in doing good, for at the proper time we will reap a harvest if we do not give up. -- Galatians 6:9

Now, after all these years, I am at peace.  I have for years been defined as having Parkinsonism and one of the Parkinson's Plus syndromes, most likely Shy Drager. Shy Drager is known as Multiple System Atrophy and I have the hallmark symptom, low blood pressure upon rising from bed or getting up from a sitting posture.  This causes blacking our, loss of oxygen to the head and can be an hours-long condition where my neck and shoulders ache, my arms and upper extremities get a numbness and lack of feeling, and my strength is very limited, causing great fatigue.  This blood pressure issue gives pause to my neurologist and is the reason why in addition to Coricobasal Syndrome (Alien hand and Eye control/focusing/tracking issues) and Parkinsonism (tremors, stiffness, loss of balance, and many other symptoms), I am considered to possibly still have MSA.

My behavior, emotions, thought changes-- an area so personal to me that I can't discuss yet-- means that I am being looked at for Fronto Temporal issues.  FTD is scary.  I don't know what to think about it.  If I am confusing you, just imagine how confused I am.

All I can say is, I am beginning to want to share about these things.  I respect my physicians and want to give them the space and freedom to consider all the avenues and pursue the best truth that describes the need and leads to the best possible treatments.  My Deep Brain Stimulator is working for me and keeps me walking-- at least enough to use my walker.

Today, Karrie is taking me on a very nice outing to Ikea.  That sounds like a lot of fun.  This will require my wheelchair and mean that I will be dodging nice people all day long. It will be great to be out and part of the world for a time.  Just enough time to let it sink in again-- I may be disabled, but I am not grounded.  Not completely.  I have Coricobasal Syndrome:  a loss of cells in my basal ganglia on both sides enough to show up in my DaT scan results and cause the loss of body control that has put me in a walker and stollen my career.

After all this time, I don't have as much to say.  However, I am beginning to want to share again.  I will give it a try, very soon.  Meanwhile, I've got so much to do. I'm a father, a husband, a grandpa and a guitar player!  Life is beautiful, man! Stay tuned-- Patient-Online

Confusion Over Parkinson's Contrasted with CBS and MSA

This is Multiple System Atrophy Awareness month!

Go to MSA Coalition Page for More Info

I have quite often discussed with some of you in the family, and various friends, about the difference between Parkinson's Disease and the Atypical Parkinsonian disorders.  I am going to give you a few points to chew on, knowing you are the best ambassadors we have for spreading the word about these rarer forms of Parkinsonism.

Parkinsonism is a condition in which signs and symptoms of Parkinson's appear in the patient's disease.  Even though the person may not have Parkinson's Disease, they have a brain disorder that causes similarly appearing symptoms, including tremors, balance problems, stiffness, walking difficulty and cognitive changes.

Parkinsonism appears with Parkinson's Plus syndromes such as Multiple System Atrophy, Corticobasal Syndrome and Progressive Supranuclear Palsy.  Since I was first diagnosed in 2006, the neurologist I saw for ten years thought that my condition was one of these three.  As time went on, Multiple System Atrophy became the most likely.  All three of these conditions are determined to be "probable" in life, and are confirmed after death through a brain tissue study.

Even though I have  Parkinsonism it is not Parkinson's Disease in the simplest form because the disease process in my brain is more involved than in Parkinson's.  I have Corticobasal Syndrome (CBS), and it is uncertain if it would be alternatively considered Multiple System Atrophy (MSA).  These have overlapping symptoms and are best described as rarer forms of Parkinson's.

Has much changed?  Not really, except I have more clarity and certainty of the degenerative brain disease that has taken so much from our lives in the Brooks family.  We are fortunate to have this increased clarity because the neurologist I have been seeing of late is a Movement Disorder specialist, which is a doctor of Neurology who specializes in all things Parkinson's and Parkinson's-like.   She saw a clear indication in the results of my DaT Scan which demonstrated that I have Parkinson's Plus, not simply Parkinson's Disease.

Parkinson's Plus has long been the understanding of my condition.  I wrote about this in my book, I WILL GO ON: LIVING WITH A MOVEMENT DISORDER.  The confusion arises because the word "Parkinson's" appears in both descriptions of the diseases.  Technically, they are different in that Parkinson's Plus is a faster progressing disease and causes more disability sooner.

That is why I was unable to continue driving and had to retire at 51.  I have difficulty walking with coordination and I struggle with choking on food and liquids.  I also have digestive, urinary, heart rate, blood pressure regulation and body temperature issues.  These are not visible to friends and family so what appears to be a better day, could be a day I am having trouble with my blood pressure or having great difficulty coughing after drinking liquids.

I also have very abnormal horizontal eye movements which are caused by a loss of neurons in the area of the brain that controls eye movement.  At times I see double as a result. 

I am so glad that you are interested and are trying to grow in your knowledge.  MSA is a disease I have been identified with for 10 years or more.  I have CBS, but if it were to turn out to be MSA at some point, that would be a very similar prognosis. My greatest concerns are pneumonia, breathing constriction, and urinary infections.  I do not have idiopathic Parkinson's, but I do have a form of Parkinsonism, and much of the research being done for P.D. will have a benefit and weight heavily on the potential for discoveries that relate to PSP, MSA and CBS syndromes.  I will always identify with my fellow patients who have Parkinson's Disease, and the support groups for Parkinson's are virtually the only in person, brick and mortar groups we can attend anywhere near the Riverside, CA area. As always, thanks for reading! -- Patient-Online

Generator Battery On the Fritz! Time to Replace

My three grown sons accompanied me at a great football game yesterday.  My team, the Los Angeles Rams, was stolen and moved to St. Louis 21 years ago.  Finally, the Rams are back in LA and I was determined, in spite of my disabilities, to go to a game with Daniel, Mark and Stephen.  They were so great and helped me find the right seating for my wheelchair and were able to sit in the rain, drink a beer and eat a hot dog together.  What a blessing! My great sons took such good care of me in and out of a stadium filled with 90,000 people and we enjoyed the
 game so much.

Stephen, Me, Mark (back), Daniel (Front Rt.)

Mark and I

The timing of this special occasion preceded by chance the sudden need for my generator for my DBS to be replaced.  I am scheduled for surgery on December 1, 2016.  It is a fairly simple procedure and will require only a few hours in the hospital.  The area in my chest where it is located will be opened up, the old one unplugged and the new one plugged in.  Then, the new generator will be placed in the scar formed pocket under my collarbone and plugged in to the connections to my two brain implants.  The area will be closed after determining if the unit is working.  The settings will be made according to my personal condition during this time.

I am seeing a new (to me) movement disorder specialist.  She is a neurologist with special training and experience beyond what a neurologist receives.  She deals with Parkinson's Disease and other diseases that have movement disorder problems similar to PD.  I do not have Parkinson's, as I am sure you know.  I do have a movement disorder which includes parkinsonism and other abnormal movements.  The accompanying autonomic failure has lead to my current diagnosis of a Parkinsonism Plus syndrome, such as Multiple System Atrophy.  PSP and CBD have also been considered.

Meanwhile, I am looking forward to my generator performance improving and thus my symptoms should also improve.  I have begun to have trouble with balance, falling and fine motor coordination resulting in trouble with tasks requiring accuracy with my hands.  Take care my friends!  -- Patient-Online

A Friend From the Start -- Going Home

In the weeks since I posted several events and changes have occurred in my life, as I am sure is true for all of you.  In particular, I was deeply saddened to learn of the death of my long time friend Dr. Nick Ferguson, whom I worked under for many years during my career as a school administrator.  Dr. Ferguson and I worked together in two districts, and he was our Superintendent in an Inland district while I served as Assistant Superintendent of Human Resources.  Dr. Nick was with me when I was diagnosed and learned I would need to retire.  His support and friendship through this difficult time will never be forgotten by me or my loved ones.

Dr. Ferguson went home after a very difficult battle with Pancreatic Cancer.  I am at a loss and will dearly miss Nick.  He was a caring and dedicated educator and manager.  He was an even better friend.  God bless his memory and may the Lord be with his wife and family.

I have been fighting a urinary tract infection, which I did get over with antibiotics.  It is caused by urinary retention, the result of spasms in my bladder resulting from Multiple System Atrophy. Subsequently, I have developed pneumonia as a result of a cough and particles of food and liquids that have entered my lungs due to swallowing issues caused by MSA.

I seem to be coming out of it.  I need to be careful so that these things do not recur.  I appreciate your reading and any comments you might make on my page.  Take care! -- Dan

Ten Years On

After ten years my perspective regarding living with a movement disorder such as MSA has become less subjective and knee-jerk, but rather objectively clear and concrete.  Does that make sense?  There have been so many stages, including plateaus filled with purpose, valleys of despair, and wide plains of empty longing for the way I once was (oh, brother is that flowery or what?).  You are probably among the dozens of people that have so closely followed my journey, so you can likely understand the meaning of my words, though maybe somewhat vague if not rambling.

Today, I see clearly that my life is a gift and that the physical and mental struggles I bring with me through this scramble through my time on earth are just part of the whole picture. The joy of life comes through if it persists through all the loses, changes and realizations that come with learning to accept the disappointments along with life's surprising graces. What a blessed person I am, and each of us can be with this perspective.

I had great talk during a breakfast out with someone in my extended family yesterday and I sensed that they had gained a lot of insight into what I am going through, and their interest had grown.  By this I mean they were wanting to be able to clarify those misunderstood aspects of Multiple System Atrophy.  They expressed how perplexing it is when others do not understanding the difference between the more commonly understood Parkinson's Disease and the complexities and seriousness of MSA (obviously, Parkinson's is not less serious, just different). It was, in this person's mind, as though "they just think of it simply as the common form of Parkinson's Disease."  "What is that again?  The name of the disorder?" they clarified.  I stated "Multiple System Atrophy" as they wrote it down.  I felt so gratified that there had developed such acceptance and a solid supportive interest.  There was a passion that accompanied the request for the right words.

I went home and called Vera James, our MSA patient coordinator who works with us and answers the hotline representing the MSA Coalition.  She will be sending me some great leaflets that give a thorough but brief explanation of the symptoms and things to watch for that define the struggles of this diagnosis.  Write me a comment and/or an email and I will send one to you.  You can always check this link to learn more about MSA and our Coalition. -- Dan

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

Walking Is Increasingly Hard this Week

Note: Our friend Lori is home after a successful hip replacement surgery.  We pray that her recovery will be smooth and timely.  Our best to you and Pastor Brad!

Multiple System Atrophy is a syndrome which causes such a variety of issues that as a patient you will forget the difficulty of one serious symptom while several others have risen to the fore. I live with balance and walking/gait difficulty always, and have since this came on just over 10 years ago.  Due to blood pressure being low (orthostatic hypotension) makes it hard to rise and begin to stride because of either a grey out moment or weakness in muscles.  Once I going, my balance due to brain changes in the cerebellum contributes to the struggle to walk with much balance, and my pace is very slow due to parkinsonism as I attempt to go get the mail from the mailbox or take the trash to the garage.  Even with a cane or walker, it is a rocky road.

These last several days, it has been worse.  I am stooped over more and moving very slowly, with an exaggerated shuffling gait.  I went in the grocery store with my wife and found the size suggests a wheelchair rather than a walker next time.  I may get my next DBS adjustment and find that it brings improvement in this area.  It is hard to say, but often the electrical stimulation that is continuously flowing to both sides of my brain, when targeted to improve a symptom can actually do something close to that!  Always Hope,  Dan

Four Years Since Deep Brain Stimulation Surgery

It has been four years since I underwent DBS surgery.   Though I have Multiple System Atrophy, I was a good candidate as deemed by my doctors.  It has been successful and I have benefited from it. 

It was quite a challenge to face brain surgery and the possible complications, not to mention the range of outcomes from success to failure that may have resulted from it.  I am glad to say that it was a big success! 

Did it change the fact that I have a neurodegenerative disease that will continue to progress?  No, it did not cure me, but this medical simulator and two implants in my brain, helps me move better and reduces unwanted jerky movements and tremors.  Also, it seems to be lengthening my life.  What more could I ask for? 

-- Dan

Bernice Bowers -- Long Time Friend of CurePSP and Shydrager Support Group

I was deeply saddened to learn yesterday that Mrs. Bernice Bowers of Milford passed away in October 2015.  Somehow this news had slipped by without our knowing in the Shydrager/MSA forum.  Bernice was a long suffering caregiver and spouse of a wonderful man named Ken Bowers, a fire fighter who was treated for a Parkinson's Plus syndrome beginning in 1987, and was eventually diagnosed with Progressive Supranuclear Palsy in 1995. 

Ken was found to actually have had MSA posthumously, made clear by the study of his brain, which was generously donated by Bernice after his death in 2000.  Bernice remained active for over a decade in the Shydrager and PSP online forums.  She participated in the first few years of the Cure PSP monthly online support group facilitated by Gary Rose and Vera James.  I personally had much contact with Bernice online and she provided encouragement and friendship throughout the confusion and disappointment of the early years of this struggle for me.  

I am certain there were many others for whom Bernice did much of the same. Bernice was a positive individual with much faith and gave her time to church and community activities and caring for friends and family.  She developed breast cancer several years ago and it had been treated successfully.  This past year it returned and she passed as a result.  Bernice wrote a poem called, "The Golden Cord" which I published in my book I WILL GO ON, along with much of Kenneth and Bernice Bowers' story of his struggle with Multiple System Atrophy.  See her online obituary here. 

We are thankful for Bernice M. Bowers and her generous support for the patients and caregivers facing MSA, PSP, CBD, DLB and other Parkinson's Plus Syndromes. She was a true friend and advocate, and will be greatly missed.  Our sympathies and prayers are with her family and friends.    -- Dan