Back from neurology. No video today. They increased my DBS setting to 3.4v on both sides. Up from 3.0. Monitoring for positive or negative side effects. My neurologist is waiting to hear from the rehab ward about a bed for a few days. She's going to have them evaluate my current intake of ldopa, possubljy add pain pills for my back plus rehab, mental health visit (no problems there), and match wits with the rehab doctor. She will try Botox again on my facial and cervical dystonia Iin 2 months. She had the dermatologist look at the mole on my toe and he said it's a wart. It will go away. My first wart ever. Still looks like a mole to me. Another fun and funny appointment.
Went to the VA hospital to see my Movement Disorder Specialist for my third attempt of Botox injections to solve my back pain and face spasms.
Below is video of me getting injected about 14 times in my face and 20 times in my back. Please note the injections are pretty much painless.
*The face shown here feels like small insect stings and may bleed slightly..
*The back was not painful at all due to the freezing spray they use first.
Since my Deep Brain Stimulation last year on July 12th my Parkinson symptoms have been under control and in some cases *totally suppressed.. With the exception of my *speech which has worsened as expected,
* DBS will rarely improve balance, prevent falls or enhance thinking or speech.
But the natural progression of my Parkinson disease has evidently continued. I have painful cervical dystonia (lower and upper back), a face spasm in my left cheek, and *Blepharospasm.
*Blepharospasm is a muscle disorder that causes involuntary spasms of the muscles around your eye. These spasms can result in uncontrolled narrowing or closing of your eyelid. This could impair your vision, and make everyday tasks such as driving or using a computer difficult.
First le me apologize for my visual. Yes it i urine in the toilet..my urine. I thought by psoting this unusual photo it may help somebody who is experienceing the same problem/scare that i did.
It turbn out that the water enhance rMio was turnin gmy urine dark bron to a light amber. I thought I was bleeding internally. My urologist took samples and set it toas lab and me to get a cat scan to lookffor kidney stones.
RESULTS: Labs& Cat Scan both turne dup negative. My urologist said it may be a medication or vitamin doing this. I have been on SINEMET since 2000 and never haqd brown urine. I did take COMTAN which turns everything orange. Your mouth, hands, clothes, and yes your pee.
The only thuign that i could think of was the MIO Water Enhancer which has become popular.
I stopped drinking it for a few days and my urine rerturned to its normal coloration. THne i started it again, and low and behold the enxt day i haad darkbron urine.
.
My urology appointment began as a routine appointment which ended up as an odd adventure that could have ended badly.
I have had a spastic bladder for years as a symptom of my Parkinson's. I had grown used to the difficult transition from boxers to diapers. This was one of the most difficult PD related symptom that I have faced...until the "cervical dystonia" joined the line-up of diseases, symptoms, and side effects that is called "my life". *See previous blog.
Read the post on my first appointment for medical grade Botox injections on the 28th of January 2011.
Seven days went by since my last Botox appoitment without any change to the horrible lower and upper back pains due to dystonia in my lower and upper back I started to become a bit disappointed. Then on the 8th day it happened. For the next 3 days I had picture perfect days. Virtually pain free, cramp free, I felt like a zillion dollars! Then yesterday a cold snap hit. My Parkinson's has always reacted badly to changes in the weather and this was a big change. The past two days the wires in my head have hurt, my lower back hurts and nothing sems to be working very well. I'm looking forward to the weather getting back to normal to see if that has an effect.
Dont get me wrong I would not chnae my DBS for all the money in the world! My MDS is wonderful andis giving me 150%. A huge hug for her from me!
Below are some random thoughts and last minute posts.
Parkinson's & Cervical Dystonia
Who knew Parkinson's disease was so easy!
Annoying Parkinson's Symptoms
I remember back in the good old days when I just had to deal with the annoying "symptoms" of Parkinson's disease. The slight tremor, the bradykenesia (slow movement), the muscle stiffness, and in my opinion the worst that Parkinson's brought to my life..the freezing episodes.
Botox Fact & Fiction:
Botox is a neurotoxin [neuro means nerve; toxin means poison] that temporarily paralyzes muscles in your face.
Botox is derived from the same botulin toxin that is found in spoiled foods. Doctors use a sterile and purified form of this toxin when administering Botox injections.
Botox injections cost up to $500 or more. The effects are not permanent. Over time, the body gradually absorbs the substance and the procedure must be repeated every 3-6 months.
The FDA has approved Botox for use only on a limited area between the eyebrows. Botox is administered only for wrinkles and does not reduce other age-related symptoms such as age spots and facial discoloration.
Improper injection has been linked to droopy eyelids. Other reported side effects include nausea fatigue, malaise, Flu and rashes.
Botox is not recommended for pregnant women, women who are breastfeeding, people with neuromuscular disorders or cardiovascular disease.
There have been no conclusive studies about the long-term side effects of Botox.
Sorry it took a few days for em to post this video and also sorry but I did not record the 10 or so face injections. The back is posted here for your viewing genjoyment
I will post details on this and the other items I missed plus details on my DBS operation as soon as I am able.
University of Utah scientists used invisible infrared light to make rat heart cells contract and toadfish inner-ear cells send signals to the brain. The discovery someday might improve cochlear implants for deafness and lead to devices to restore vision, maintain balance and treat movement disorders like Parkinson's. "We're going to talk to the brain with optical infrared pulses instead of electrical pulses," which now are used in cochlear implants to provide deaf people with limited hearing, says Richard Rabbitt, a professor of bioengineering and senior author of the heart-cell and inner-ear-cell studies published this month in The Journal of Physiology. The studies – funded by the National Institutes of Health – also raise the possibility of developing cardiac pacemakers that use optical signals rather than electrical signals to stimulate heart cells. But Rabbitt says that because electronic pacemakers work well, "I don't see a market for an optical pacemaker at the present time." The scientific significance of the studies is the discovery that optical signals – short pulses of an invisible wavelength of infrared laser light delivered via a thin, glass optical fiber – can activate heart cells and inner-ear cells related to balance and hearing. In addition, the research showed infrared activates the heart cells, called cardiomyocytes, by triggering the movement of calcium ions in and out of mitochondria, the organelles or components within cells that convert sugar into usable energy. The same process appears to occur when infrared light stimulates inner-ear cells.
IMAGE:Using an elaborate apparatus to study the inner-ear cells of the oyster toadfish (in clear plastic container, lower right), University of Utah bioengineering professor Richard Rabbitt found that infrared light...
Infrared light can be felt as heat, raising the possibility the heart and ear cells were activated by heat rather than the infrared radiation itself. But Rabbitt and colleagues did "elegant experiments" to show the cells indeed were activated by the infrared radiation, says a commentary in the journal by Ian Curthoys of the University of Sydney, Australia. Curthoys writes that the research provides "stunningly bright insight" into events within inner-ear cells and "has great potential for future clinical application." Shedding Infrared Light on Inner-Ear Cells and Heart Cells The low-power infrared light pulses in the study were generated by a diode – "the same thing that's in a laser pointer, just a different wavelength," Rabbitt says. The scientists exposed the cells to infrared light in the laboratory. The heart cells in the study were newborn rat heart muscle cells called cardiomyocytes, which make the heart pump. The inner-ear cells are hair cells, and came from the inner-ear organ that senses motion of the head. The hair cells came from oyster toadfish, which are well-establish models for comparison with human inner ears and the sense of balance. Inner-ear hair cells "convert the mechanical vibration from sound, gravity or motion into the signal that goes to the brain" via adjacent nerve cells, says Rabbitt. Using infrared radiation, "we were stimulating the hair cells, and they dumped neurotransmitter onto the neurons that sent signals to the brain," Rabbitt says. He believes the inner-ear hair cells are activated by infrared radiation because "they are full of mitochondria, which are a primary target of this wavelength."
IMAGE:University of Utah bioengineer Rick Rabbitt uses a microscope in his laboratory to study how hearing- and balance-related cells in the inner ear transmit signals to the brain.
The infrared radiation affects the flow of calcium ions in and out of mitochondria – something shown by the companion study in neonatal rat heart cells. That is important because for "excitable" nerve and muscle cells, "calcium is like the trigger for making these cells contract or release neurotransmitter," says Rabbitt. The heart cell study found that an infrared pulse lasting a mere one-5,000th of a second made mitochondria rapidly suck up calcium ions within a cell, then slowly release them back into the cell – a cycle that makes the cell contract. "Calcium does that normally," says Rabbitt. "But it's normally controlled by the cell, not by us. So the infrared radiation gives us a tool to control the cell. In the case of the [inner-ear] neurons, you are controlling signals going to the brain. In the case of the heart, you are pacing contraction."
New Possibilities for Optical versus Electrical Cochlear Implants Rabbitt believes the research – including a related study of the cochlea last year – could lead to better cochlear implants that would use optical rather than electrical signals. Existing cochlear implants convert sound into electrical signals, which typically are transmitted to eight electrodes in the cochlea, a part of the inner ear where sound vibrations are converted to nerve signals to the brain. Eight electrodes can deliver only eight frequencies of sound, Rabbitt says. "A healthy adult can hear more than 3,000 different frequencies. With optical stimulation, there's a possibility of hearing hundreds or thousands of frequencies instead of eight. Perhaps someday an optical cochlear implant will allow deaf people to once again enjoy music and hear all the nuances in sound that a hearing person would enjoy." Unlike electrical current, which spreads through tissue and cannot be focused to a point, infrared light can be focused, so numerous wavelengths (corresponding to numerous frequencies of sound) could be aimed at different cells in the inner ear. Nerve cells that send sound signals from the ears to the brain can fire more than 300 times per second, so ideally, a cochlear implant using infrared light would be able to perform as well. In the Utah experiments, the researchers were able to apply laser pulses to hair cells to make adjacent nerve cells fire up to 100 times per second. For a cochlear implant, the nerve cells would be activated within infrared light instead of the hair cells. Rabbitt cautioned it may be five to 10 years before the development of cochlear implants that run optically. To be practical, they need a smaller power supply and light source, and must be more power efficient to run on small batteries like a hearing aid.
Optical Prosthetics for Movement, Balance and Vision Disorders Electrical deep-brain stimulation now is used to treat movement disorders such as Parkinson's disease and "essential tremor, which causes rhythmic movement of the limbs so it becomes difficult to walk, function and eat," says Rabbitt. He is investigating whether optical rather than electrical deep-brain stimulation might increase how long the treatment is effective. Rabbitt also sees potential for optical implants to treat balance disorders. "When we get old, we shuffle and walk carefully, not because our muscles don't work but because we have trouble with balance," he says. "This technology has potential for restoring balance by restoring the signals that the healthy ear sends to the brain about how your body is moving in space." Optical stimulation also might provide artificial vision in people with retinitis pigmentosa or other loss of retinal cells – the eye cells that detect light and color – but who still have the next level of cells, known as ganglia, Rabbitt says. "You would wear glasses with a camera [mounted on the frames] and there would be electronics that would convert signals from the camera into pulses of infrared radiation that would be patterned onto the diseased retina that normally does not respond to light but would respond to the pulsed infrared radiation" to create images, he says. Hearing and vision implants that use optical rather than electrical signals do not have to penetrate the brain or other nerve tissue because infrared light can penetrate "quite a bit of tissue," so devices emitting the light "have potential for excellent biocompatibility," Rabbitt says. "You will be able to implant optical devices and leave them there for life."
###
The heart cell study was led by Rabbitt, with University of Utah bioengineering doctoral student Gregory Dittami as first author. Co-authors were Suhrud Rajguru, a former Utah doctoral student now at Northwestern University in Chicago; Utah doctoral student Richard Lasher; and Robert Hitchcock, an assistant professor of bioengineering at the University of Utah. Rabbitt's coauthors on the inner-ear study included first author Rajguru; Dittami; Claus-Peter Richter and Agnella Matic of Northwestern University; neuroscientist Gay Holstein of Mount Sinai School of Medicine in New York; and neuroscientist Stephen Highstein of the Marine Biological Laboratory in Woods Hole, Mass. University of Utah Public Relations
201 Presidents Circle, Room 308
Salt Lake City, Utah 84112-9017 (801) 581-6773 fax: (801) 585-3350
I recently forgot my Windows 7 password and have been attempting to recover the password free. This turned out to be a futile task. Howeever, I did the next best thing and invested $19.95 into password recovery software.
Windows Login Recovery is a secure Windows password recovery tool designed to reset lost passwords for any version of Windows.
How to use Windows Login Recovery Standard?
Windows Login Recovery Standard enables you to reset Windows password in just 4 simple steps:
Yesterday the topic of driving was brought up at my DBS programming session with my MDS. She had seen the videos of me on this BLOG and noticed something that I failed to. My head didn't turn once, even at the stoplights. She then told me I should stop driving and I agreed.
The above video must be advanced to the 6th segment in order to view this topic.
OR
Use the following link to be taken directly to the correct segment.
Today was the first of two days at the University of New Mexico as a subject for the new neurology students. It was a wonderful feeling to be out in public once again. I spent abourt 3 hours with 6 students and a certified neurologist.
Had so much fun especially after when showing them my neuro-stimulator in my chest!
I took my shirt off and tossed it to the attractive student who earlier while examining me asked "When is the last time you had sex?" and "Do you use protection?" I wanted to say "About a year with a partner, whats your name and number?" But I held it in and replied "About a year ago and no protection."
The neuro-stimulator in my chest with leads in my brain .
On Friday the11th of February I had my 6th DBS programming session. As usual it went very well despite
some confusion with the front desk. The appointment ended and we drove home, ate lunch then I felt tired so I went to my room to attempt a nap.
Then I woke up unable to move or talk.Finally an hour later my room mate came by and saw me just laying there.
Although a scary experience it was a powerful eye opener. It must be close to what it feels to be buried alive. Abandon all hope if your neurotransmitter gets turned or left off on accident!
I still don't understand how I left the 4th floor of the VA Hospital, walked to my truck, came home and ate lunch. I felt great.
But when my legs started to not listen to the movement instructions my brains was sending via the dopamine receptors, I could hardly move my legs. So I did the old fall forward and catch he wall trick and eventually made it to my room. Something wasn't right.
I fell onto my bed and found I couldn't talk or move at all. I layed there for an hour thinkng "this sucks".
Activa® Patient Programmer
Finally after an hour Naomi came by and saw me. I was able to point at the neuro-stimulator battery in my chest like I have done a hundred times before when I though it was off. Always wrong.
The look on naomis face was classic "your right it's off"! She clicked the button on our DBS remote an walked away. Not one minute later I was up and walking with little to no problems.
The oddest thing happened when I was able to move and speak. I cried and cried.
Not tears of sadness but happy tears.
I want to thank my MDS for giving me new chance at life. The chance at a life out of a bed and not a prisoner of my body.
The ironic thing is a very special young onset friend of mine, Donna, asked me just that morning how it would feel if I it was tuned off for a few hours. Now we know!
NOTES:
Could it have been something else in the hospital that turned it off?
And the cramps are gone! But the heavy flow drool returned.
Reply from my MDS:
Really. Sorry. I wonder if it turned off when I exited the program. Glad you recovered. Hope you are doing well. SPR
Yesterday I had my first ever medical grade botox injections to treat myofascial spasms related to my Parkinson's disease. Before my appointment I did some research on using bot-ox to treat Parkinson's symptoms. I was not only amazed at the list of Parkinson's disease motor symptoms but the many non-motor symptoms it helps as well. I will ad both lists to this post later.
I arrived at my appointment a little bit, no a lot apprehensive. I mean I have had lots of shots in my life but none to the exterior of my face. I did bust my chin through the skin in a bicycle accident when I was a boy and that required a shot of Novocaine. And of course the shots of Novocaine they give you at the dentist. But not 10 shots!
The neurological disorder that plagues Art Kessler arches his spine painfully backward and swivels his neck sideways. Every three months for the past four years, the 39-year-old private-equity manager from Chicago has gotten injections in his neck and along his spine that relax his tightened muscles and allow him to work, play with his young son, and "live a normal life. It's been huge for me in terms of keeping me mobile," Kessler says. The shots responsible? Botox.
In the past decade, since its war on wrinkles began, Botox has gained a massive following, from soccer moms to movie stars, who refuse to accept the evidence that they're getting on in years. Sales for cosmetic use of the drug, which causes temporary muscle paralysis and prevents the grimacing that leads to crow's feet and frown lines, were $357 million in 2005, according to Allergan, the drug's manufacturer. Meantime, sales for far-less-publicized therapeutic uses reached $473 million, as doctors have wielded it against everything from cerebral palsy to headache to Parkinson's disease and crossed eyes. "I don't know of a single treatment that has more applications," says Joseph Jankovic, director of the Parkinson's Disease Center and Movement Disorders Clinic at Baylor College of Medicine in Texas and a pioneer in Botox research.
It was Jankovic's work that led the Food and Drug Administration to approve Botox back in 1989 as a treatment for blepharospasm, an eye-muscle disorder that causes abnormal blinking. Injecting the drug-diluted botulinum toxin, a poison-directly into an affected muscle inhibits the neurotransmitter acetylcholine from relaying messages from the brain, which relaxes the clenching and thereby eases pain. It's the overactive signaling from the brain that's common to the conditions the drug treats best. Botox paralyzes only at the site of the injection, but patients must endure needle jabs directly into the problem area-again and again, since the drug's effect wears off in a few months.
Off-label use. Besides brow-wrinkling and blepharospasm, Botox has been approved to treat crossed eyes, cervical dystonia (involuntary muscle contractions in the neck and shoulder), and-most recently-excessive underarm sweating. (Acetylcholine also stimulates sweat glands.) But the list of "off label" targets has been growing fast and now includes lower back pain, constipation, epilepsy, tennis elbow, and fibromyalgia, to name a few. Jankovic considers the injections to be quality-of-life-saving to a number of patients with disorders that cause uncontrollable movements, including Parkinson's disease, tremors, and Tourette's syndrome. (With research support from the drug companies, Jankovic has been studying the effectiveness of two competing drugs as well as Botox, in hopes of ultimately lowering the cost of treatment.)
"Without it, I would not be on the air," says National Public Radio talk show host Diane Rehm, who has spasmodic dysphonia. The condition clenches her vocal cords, causing her voice to quiver and crack. Shots into her vocal cords every four months have saved her career, she says. More than 50 clinical trials of botulinum toxin are currently underway, including Allergan-sponsored efforts to rack up FDA approvals for headache, overactive bladder, and spasticity caused by stroke.
"There's a lot of experimentation going on," says Christine Cheng, assistant clinical professor in the School of Pharmacy at the University of California-San Francisco, who has studied the body of research on Botox's off-label uses. While there's mounting excitement about the drug's potential, Cheng thinks patients need to be cautious about off-label use, since its effectiveness and safety are yet to be proved in many cases. "Don't demand a certain treatment just because you saw a headline," she advises.
Possible side effects include headache, flulike symptoms, and greater-than-intended muscle weakness-causing a droopy eyelid after treatment for a blinking disorder, for example. Because Botox is not permanent, neither is the weakness, but the comeback can take weeks. No one knows what the effect might be of long-term use. And it's been observed that a small percentage of people develop antibodies to the Botox, making it less effective.
Botox offers "an alternative to drugs in difficult patients" when other therapies have failed, says Seymour Diamond, director of the inpatient headache unit at St. Joseph Hospital in Chicago. He's conducting Allergan-funded research on the use of Botox for headache. "But I'd be reluctant about its generalized use until proven useful," he says.
Where the science is sound, some insurance plans will cover Botox treatments even without the blessing of the FDA. Injections for writer's cramp, certain gastrointestinal disorders, and spasticity caused by brain injury, multiple sclerosis, or hereditary paraplegia are sometimes covered, for example. Aetna and Cigna, among other insurers, say that they may cover other uses if a doctor deems Botox medically necessary. "Where there's inconsistent literature, we'd give case-by-case consideration," says Daniel Winn, a medical director at CareFirst BlueCross BlueShield of greater Washington, D.C. So far, wrinkles don't clear the industry's bar.
Not a cure. Even when it works, Botox doesn't address the underlying condition. Kessler is now scheduled to get deep brain stimulation, a surgery that will implant electrodes in his brain to override the problematic signals caused by his condition, generalized dystonia; he hopes it will make the injections unnecessary. But sometimes just managing symptoms improves a patient's prognosis. In people with dystonias or spasticity, for example, Jankovic believes the drug can alter the disease's progression: Early treatments may head off the permanent contortions that can occur when muscles are contracted for a prolonged period and tendons shorten.
"I wanted to function," says Edward Rosa, 70, who started treatments after a stroke six years ago left him with clenched muscles on his left side. The retired Montville, N.J., businessman, who still does some consulting, says the therapy allowed him to exercise other muscles, improving his range of motion. At first, he went in four times a year for injections in his arm and leg. As he's progressed, the interval has lengthened; his last appointment was a year ago.
Because the delivery of the drug is localized and its effect wears off, some doctors like it as a possible alternative to more systemic and permanent treatments. Compared with drugs or surgery, "this is so minimally invasive," says Michael Chancellor, director of neurourology and female urology programs at the University of Pittsburgh Medical Center. Chancellor uses Botox off label to relieve muscle spasms in the pelvic floor and to manage enlarged prostate. By relaxing muscle tissue that permeates the gland, he says, the drug seems to reduce pressure on other parts of the urinary tract. Chancellor, who has received research funding from Allergan, is now investigating the treatment for overactive bladder.
Ironically, Botox's power is derived from a substance that the federal government classifies as capable of inflicting mass casualties. While using it as a weapon would be extremely difficult technically, botulinum toxin is "the most poisonous substance known," says Zygmunt Dembek, a biochemist and epidemiologist at the U.S. Army Medical Research Institute of Infectious Diseases. "And it has great potential for good."
