April 4th I check in at the imaging department at OHSU. On the 5th I rest and finish any and all last minute life stuff. The next day on the 6th of April I have my official surgery. I stay in the hospital overnight, then assuming all goes well a few days later they insert my power pack, then 2-3 weeks later I get plugged in and tuned up. They’ve provided 3 days worth of housing free of charged which is a blessing indeed . Unfortunately the who process is two surgeries and a recommended 30 day healing and stabilization period. These donations will go directly to the lodging and direct care that OHSU and insurance doesn’t cover. Any and all donations are impactful and I can’t express my gratitude and thanks for all of you. Please share the link even if you can’t help monitarily . All things done with love and light will be successful. Always and with some luck, science and faith I’ll see you all on the other side of this. If not please remember to always be brave be bold and thrive in the life you have.
First I should say that any day I wake up is worth living. I’m thankful that even in stage 7-8 pain for months on end that I can say life is worth living. Hope is still worth fighting for and there are paintings to be done right? No time to be crying in my soup. Matter of fact I think we should listen to some music before we read much further because below although entirely factual its pretty depressing. So first music then science and maybe some paint.
Science time:
Entacapone (Comtan)
Prescription drug
Consult a doctor if you have a medical concern.
Is given with levodopa/carbidopa to treat symptoms of Parkinson’s disease, such as tremors, stiffness, slow movement, and problems with balance.
Side effects – Warnings – How to use
National Library of Medicine
Brand name: Comtan
Pregnancy risk: Category C (Risk cannot be ruled out)
May treat: Parkinson’s disease
Drug class: Catechol-O-Methyltransferase Inhibitor
Other drugs in same class: Carbidopa/Levodopa/Entacapone, Tolcapone This is the darn med that I have been out of for the past 6 days. Finally I have it back in my system but I’m not sure I really enjoy it.
Precautions While Using This Medicine
It is important that your doctor check your progress at regular visits to make sure that this medicine is working properly and to check for unwanted effects.
Do not stop taking entacapone without first checking with your doctor. Your doctor may want you to gradually reduce the amount you are taking before stopping completely.
Nausea may occur, especially when you first start taking this medicine. Also, an increase in body movements and twitching, twisting, or uncontrolled movements of the tongue, lips, face, arms or legs may occur. Your doctor may need to adjust your dose of levodopa/carbidopa if these movements occur.
This medicine may cause some people to become dizzy or drowsy. Make sure you know how you react to this medicine before you drive, use machines, or do anything else that could be dangerous if you are not alert.
Dizziness, lightheadedness, or fainting may occur, especially when you get up from a lying or sitting position. Getting up slowly may help. If you should have this problem, check with your doctor.
Hallucinations (seeing, hearing, or feeling things that are not there) may occur in some patients.
Parkinson’s Disease:
Symptoms may be mild at first. For instance, you may have a mild tremor or a slight feeling that one leg or foot is stiff and dragging. Symptoms may affect one or both sides of the body, and can include:
Symptoms include:
Slow blinking
Constipation
Difficulty swallowing
Drooling
Problems with balance and walking No expression in the face (like you are wearing a mask) 😉
Muscle aches and pains
Movement problems, which include:
Difficulty starting movement, such as starting to walk or getting out of a chair
Difficulty continuing to move
Slowed movements
Loss of small or fine hand movements; writing may become small and difficult to read; eating becomes difficults
Rigid or stiff muscles, often beginning in the legs
Shaking, called tremors
Usually occurs in the limbs at rest, or when the arm or leg is held out
Goes away when you move
Eventually may be seen in the head, lips, tongue, and feet
May be worse when tired, excited, or stressed
Finger-thumb rubbing (pill-rolling tremor) may be present
Slowed, quieter speech and monotone voice
Stooped position
Low blood pressure when getting up, sweating, drooling, lack of body temperature control. These problems are due to something called autonomic dysfunction. Other symptoms may include:
Anxiety, stress, and tension
Confusion
Dementia
Depression
Fainting
Hallucinations
Memory loss Expectations (prognosis)
Untreated, the disorder will get worse until a person is totally disabled. Parkinson’s may lead to a deterioration of all brain functions, and an early death.
Most people respond to medications. How much the medications relieve symptoms, and for how long can be very different in each person. The side effects of medications may be severe. Complications
Difficulty performing daily activities
Difficulty swallowing or eating
Disability (differs from person to person)
Injuries from falls
Pneumonia from breathing in (aspirating) saliva
Side effects of medications
Calling your health care provider
Call your health care provider if:
You have symptoms of Parkinson’s disease
Symptoms get worse
New symptoms occur
Also tell the health care provider about medication side effects, which may include:
Changes in alertness, behavior or mood
Delusional behavior
Dizziness
Hallucinations
Involuntary movements
Loss of mental functions
Nausea and vomiting
Severe confusion or disorientation
Source: http://www.ncbi.nlm.nih.gov/pubmedhealth/PMH0001762/#adam_000755.disease.prognosis
** as morbid as the information above is, I love the fact that it’s bold face honest, in our society we like things to be pretty, oh it’s okay pd just gets you foundations and sit-coms. Breast cancer gets you pretty pink ribbons and of-course the new craze I saw “we got your six”. Really so when a 50c takes my partners head and turns it into pink mist, you got my six really e’f you. Sorry that commercial today made me mad. How about you provide medical care and livable pensions after we come home changed forever. Sorry had to rant. I know who has my six and its not a new cool shiny pin, that’s pink,silver or gold. But hey deep breath, 1,2,3,4,……5,…..6,,,,,,,,, ok all better. Let’s paint.
These piece was done in 1996 and was a gift to my late father, it painted in oils and sculpted using a secret recipe that I still use today in all my heavily textured work.
Who I was:
What I am:
Much love, hope and strength to all and to all goodnight.
“Vibro un Sanctum”
One of my first “breakout” paintings. I think one of the biggest hurdles I’ve faced in my evolution of art is letting go. I can Identify with the Picasso quote completely. “It took me four years to paint like Raphael and a life time to paint like a child” Pablo Picasso.
“Having Picasso to Easter dinner”
I hope the day is kind to you. May your hearts be full, your mind be clear and your soul be free.
** I’ve been a good boy and not inundated you guys with PD facts but ya know a little science time is good now and again** I’m still shocked at how truly little is known about PD after I was first diagnosed I spent about 6 month reading everything seriously I was obsessed, the funny thing is all the research ends with a question mark. I guess that’s what happens when the human brain try’s to study the human brain. At some point we hit a wall.
What is Parkinson’s Disease?
Parkinson’s disease (PD) is a chronic and progressive movement disorder, meaning that symptoms continue and worsen over time. Nearly one million people in the US are living with Parkinson’s disease. The cause is unknown, and although there is presently no cure, there are treatment options such as medication and surgery to manage its symptoms.
Parkinson’s involves the malfunction and death of vital nerve cells in the brain, called neurons. Parkinson’s primarily affects neurons in the an area of the brain called the substantia nigra. Some of these dying neurons produce dopamine, a chemical that sends messages to the part of the brain that controls movement and coordination. As PD progresses, the amount of dopamine produced in the brain decreases, leaving a person unable to control movement normally.
The specific group of symptoms that an individual experiences varies from person to person. Primary motor signs of Parkinson’s disease include the following.
tremor of the hands, arms, legs, jaw and face
bradykinesia or slowness of movement
rigidity or stiffness of the limbs and trunk
postural instability or impaired balance and coordination
Scientists are also exploring the idea that loss of cells in other areas of the brain and body contribute to Parkinson’s. For example, researchers have discovered that the hallmark sign of Parkinson’s disease — clumps of a protein alpha-synuclein, which are also called Lewy Bodies — are found not only in the mid-brain but also in the brain stem and the olfactory bulb.
These areas of the brain correlate to nonmotor functions such as sense of smell and sleep regulation. The presence of Lewy bodies in these areas could explain the nonmotor symptoms experienced by some people with PD before any motor sign of the disease appears. The intestines also have dopamine cells that degenerate in Parkinson’s, and this may be important in the gastrointestinal symptoms that are part of the disease.
To Learn More:
Browse information about the symptoms of Parkinson’s.
Have you been diagnosed with a Parkinson’s Plus Syndrome? Read Understanding Parkinson’s Plus Syndromes and Atypical Parkinsonism – to better understand your diagnosis and how it may differ from a diagnosis of Parkinson’s disease.
Order PDF’s free publications, including our Introductory Packet and the recently published Second Edition of the Parkinson’s Disease Resource List.
Review the most frequently–asked questions that we receive through our Parkinson’s Information Service (PINS), by browsing the PINS Frequently Asked Questions.
Learn general facts about Parkinson’s disease by reading, Parkinson’s FAQ.
***please follow the link to learn more** http://www.pdf.org/en/about_pd
Expressions of my life - An evolution of art. 