My DaTscan Results Made My PD Diagnosis ‘Real’


When I was first diagnosed with Parkinson’s disease (PD) in 2015, I asked the neurologist if there was a definitive test to confirm a PD diagnosis. I mentioned a DaTscan, but he said the test is not entirely conclusive. He also indicated that DaTscan results likely would not change his prescribed course of treatment for me.

His view was that the best way to confirm a PD diagnosis is to give a patient the medication levodopa to see if PD symptoms disappeared. Other neurologists I consulted for second opinions concurred with his assessment.

What is a DaTscan?

DaTscan is a medication that is injected into the bloodstream to assess dopamine-containing neurons that are involved in controlling movement. The contrast agent ioflupane (123I) is distributed around the body in the bloodstream and accumulates in the area of the brain called the striatum, where it attaches to the structures that transport dopamine. The patient then has a single-photon emission computed tomography (SPECT) scan.

The DaTscan test was designed to differentiate parkinsonian syndromes from essential tremor. PD is the most common form of parkinsonian syndromes, but there are other forms, including multiple system atrophy and progressive supranuclear palsy.

My DaTscan

A comparison between a normal and an abnormal DaTscan can be viewed here. A normal DaTscan will show two distinct comma-like or crescent shapes. An abnormal DaTscan will have two period-like or oval shapes, or a combination of period and comma shapes, indicating a reduced uptake of DaTscan in certain areas of the brain. Parts of the image that are “lit up,” indicate more surviving brain cells. Dark areas could mean either PD or parkinsonism.

My DaTscan image showed that the right side of my brain is less “lit up” than the left side. The right hemisphere of the brain coordinates the left side of the body. The left side of my body is the one most affected by PD, so it makes sense that my right side brain is less “lit up.”

Am I convinced that I have PD?

Three years after my diagnosis, I am still struggling to find relief from my symptoms and slow the progression of this disease. I exercise, eating a mostly vegan and gluten-free diet, take Sinemet (carbidopa-levodopa), and use the Neupro transdermal patch. I am working with my current neurologist to fine-tune my medication “cocktail.”

I had wondered whether I did have PD since I’ve never had an “aha” moment in which I feel somewhat normal after taking medications. People tell me I look fine and they don’t observe any external signs of the disease. However, my tremors are internal and I feel horrible and constantly fatigued.

Why now?

I am subjecting my body to what I believe are toxic medications to treat a disease that I feel has been subjectively diagnosed. My symptoms have not been completely alleviated with my current exercise, diet, and prescription medication regimen. I wanted more concrete evidence that I have PD, so my neurologist prescribed a DaTscan. Much to my dismay, the results were abnormal and compatible with Parkinson’s syndrome.

Seeing my brain image with areas not “lit up” where they should be, when contrasted with a normal DaTScan, made my diagnosis very real for me. I have a form of parkinsonian syndrome — most likely PD.

Would I still have gotten a DaTscan?

It was important for me to have confirmation other than my symptoms of abnormalities in my brain. I think this scan can be used as a baseline to follow my disease progression.

So, yes, I would have still gotten this test, although the $2,000 out-of-pocket cost upfront may have given me pause.


Note: Parkinson’s News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Parkinson’s News Today or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to Parkinson’s disease.

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Focused-ultrasound Lesion Surgery Can Treat Tremors and Improve Life Quality, Study Says

tremors and surgery

Treating tremor in Parkinson’s patients using non-invasive and focused-ultrasound lesion surgery is associated with better quality of life when compared to deep brain stimulation, although both approaches are equally effective in easing this disease symptom, a review study reports.

The study, “Outcomes in Lesion Surgery versus Deep Brain Stimulation in Patients with Tremor: A Systematic Review and Meta-analysis,” was published in the journal World Neurosurgery.

At least 50 percent of people with Parkinson’s, essential tremor (ET) or multiple sclerosis (MS) given oral medications as a first-line treatment for tremor — defined as an involuntary, uncontrollable muscle contraction; most commonly in the hands — do not tolerate these medications over the long term.

Current alternatives include deep brain stimulation (DBS) and lesion surgery (LS), which induces lesions on targeted areas using a heated electrode or focused ultrasound. Prior comparisons have shown that while the two techniques are equally effective in suppressing tremor, DBS led to a greater improvement in function.

But LS with focused ultrasound is gaining in popularity, and one study suggested that it may significantly improve tremor and quality of life.

Researchers at Harvard Medical School conduced a systematic review and a meta-analysis — a type of statistical study that combines the results of various studies — to determine which strategy is most effective in diminishing tremor severity and improving life quality and function in people with Parkinson’s, ET, or MS.

Three online databases were searched for results of randomized clinical trials published up to Jan. 1, 2018, and that included adults treated with either LS or DBS, or serving as controls. Both DBS and LS studies targeted unilateral or bilateral thalamus, pallidum or subthalamic nucleus, all of which are implicated in motor function.

Thirteen Parkinson’s trials were among the 15 included in this study, and the primary outcome for all but one was change in upper limb tremor severity, as assessed with the unified Parkinson’s disease rating scale (UPDRS) part III. Changes in quality of life, cognitive function and neuropsychiatric function were also assessed with variable measures.

A total of 1, 508 patients (mean age range, 48.4 to 70.8) were included, and in addition to the 13 studies involving only Parkinson’s patients, one study looked at people with Parkinson’s, ET and MS, while the remaining study was in people with severe ET.

Four of the 15 trials — involving 125 patients — directly compared DBS to LS. The others compared either LS or DBS with controls.

Results showed that DBS and LS were not significantly different across all analyzed outcomes, which is in line with current guidelines, the researchers noted. All but one trial showed both these types of surgery eased tremor severity. Quality of life findings showed variability in outcomes, which was driven by disease duration. Specifically, longer disease duration correlated with a greater likelihood of surgery and better quality of life.

A subgroup analysis that looked specifically at LS using focused ultrasound revealed that this approach was associated with a significant improvement in quality of life compared to DNS, although changes in tremor severity were similar.

“Policy makers, healthcare providers, and patients could therefore consider focused-ultrasound [LS] as a potential choice for tremor control, based on currently available evidence,” the researchers wrote.

However, results from more studies directly comparing DBS with focused-ultrasound LS are needed, they advised.

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Xeomin Eases Tremor Severity, Improves Hand Function in People with Essential Tremor, Phase 2 Trial Shows

essential tremor, Xeomin

Intramuscular treatment with Xeomin (incobotulinumtoxinA) decreases tremor severity and improves hand function in patients with essential tremor of the upper limbs, according to Phase 2 trial results.

Results of the trial, titled “Efficacy and safety of incobotulinumtoxinA for upper-limb essential tremor in a randomised, double-blind, placebo-controlled trial using kinematics-guided clinical decision support,” was presented at the recent 2018 World Congress on Parkinson’s Disease and Related Disorders in Lyon, France.

Essential tremor — often misdiagnosed as Parkinson’s disease — is a progressive movement disorder, found in more people ages 40 and older. It mainly affects the hands and arms, but head, voice, and leg tremors may also occur.

Unlike Parkinson’s, which is associated with motor symptoms such as slow movement and muscle stiffness, essential tremor does not cause other health problems, although unsteady gait may be observed. Also, while patients with Parkinson’s typically experience tremors when their hands are at rest, those with essential tremor have them when using their hands.

Researchers conducted a randomized, double-blind Phase 2 clinical trial (NCT02207946) — sponsored by Merz Pharma, Xeomin’s developer — to evaluate the effectiveness and safety of a single, kinematics (motion)-guided intramuscular injection of Xeomin in adults with moderate to marked essential tremor in their upper limbs. The trial was conducted in the U.S. and Canada.

A total of 30 patients were included — 19 of whom were randomized to receive Xeomin, at a total dose of up to 195 Units, and 11 received a placebo. The participants all got an injection in the wrist, with optional injections into the shoulder and/or elbow. Muscle selection was based on each patient’s patterns of tremor, while doses per muscle were based on a kinematics-guided TremorTek analysis, which uses a combination of wearable movement sensors and computer software.

Differences between Xeomin and placebo were assessed at weeks four and eight for maximum wrist-tremor amplitude and motor performance, measured by the Fahn-Tolosa-Marin (FTM) Part B score. Analyses of tremor severity, with the FTM tremor scale, and grip strength were conducted over 24 weeks.

Treatment with Xeomin induced a trend toward decreased wrist-tremor amplitude, compared with placebo, at week four, and showed a significant improvement at week eight. Persistent anti-tremor effects were seen by motion measurements up to 24 weeks after a single injection of Xeomin.

The data further demonstrated that Xeomin significantly improved motor performance at both the fourth and eighth weeks. Maximum grip strength in the treated arm decreased by 20%, with no notable change in those on placebo. Although two patients receiving Xeomin reported localized finger-muscle weakness, none of the participants discontinued treatment due to muscle weakness.

“Kinematics-guided incobotulinumtoxinA (Xeomin) administration significantly decreased tremor severity and improved hand motor function versus placebo in patients with ET of the upper limb,” the researchers wrote.

Xeomin was recently approved by the U.S. Food and Drug Administration to treat adults with chronic sialorrhea, or excessive drooling, a common condition in Parkinson’s patients. It has also been approved for the treatment of adults with abnormal head position and neck pain due to involuntary contraction of neck muscles, abnormal spasm of the eyelids (blepharospasm) in patients previously treated with Botox (onabotulinumtoxinA), and to reduce muscle stiffness of the upper limbs.

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Source: Parkinson's News Today

New AI Model May Improve Use of Touchscreens by Patients with Parkinson’s, Other Disabilities

user interface

Finnish and Japanese researchers have developed a new algorithmic approach to user interface optimization that takes individual differences into account. This approach could be beneficial for patients with Parkinson’s disease or other disabilities.

The research, “Ability-Based Optimization of Touchscreen Interactions,” was published in the journal IEEE Pervasive Computing.

Among the limitations presented by users with disabilities are essential tremors, characterized by involuntary and rhythmic shaking, most often when using the hands for simple tasks, dyslexia, which impairs the ability to read words of the interface, and dementia.

Strategies to overcome these limitations could involve increasing the size of user interface elements and grouping functions together, reducing the amount of text in the screen and making sure it is correct,  creating designs that require as little previous knowledge as possible, and prioritizing frequent tasks.

“The majority of available user interfaces are targeted at average users. This ‘one size fits all’ thinking does not consider individual differences in abilities — the aging and disabled users have a lot of problems with daily technology use, and often these are very specific to their abilities and the circumstances,” Jussi Jokinen, one of the study’s co-authors, said in a press release.

Approaches to improve the user interface require an accurate model of the user, Jokinen observed. “Previously, designers did not have detailed models that are based on psychological research and can be used to predict how different individuals perform in interactive tasks,” he said.

The scientists developed a new model of interaction, which combines psychological research on finger pointing and eye movements to predict limitations in text entry speed, typing, and proofreading.

By simulating a user with essential tremors, the researchers predicted that using the common Qwerty keyboard is almost impossible, because more than half of all typed keys are typos. “We chose to simulate and optimize for essential tremor, because it makes text entry very difficult,” Jokinen said.

“We connected the text entry model to an optimizer, which iterates through thousands of different user interface designs. No real user could of course try out all these designs. For this reason it is important that we could automatize the evaluation with our computational model,” he added.

This resulted in an interface predicted to be superior for individuals with essential tremors; the simulated user did not make any entry errors. The optimized layout was then tested with a person with essential tremors, who was able to type almost error-free messages.

“This is of course just a prototype interface, and not intended for consumer market,” Jokinen said. “I hope that designers pick up from here and with the help of our model and optimizer create individually targeted, polished interfaces.”

“While more empirical work is needed to evaluate the results, the first evidence acquired in this paper is promising,” the researchers wrote. Future work should test the design for dyslexics, they said.

Beyond the confirmed validity of the model in essential tremor and text entry, scientists also may use it for other disabilities and tasks. “For example, we have models for simulating how being a novice or an expert with an interface impacts users’ performance,” Jokinen said.

The effects of memory impairment in learning and everyday use of interfaces also may be addressed, he added.

“The important point is that no matter the ability or disability, there must be a psychologically valid theory behind modeling it. This makes the predictions of the model believable, and the optimization is targeted correctly,” Jokinen said.

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Source: Parkinson's News Today

New Lithuanian Technology Reduces Hand Tremor, May Be Useful for Parkinson’s

essential tremor invention

A new technology that reduces “shaky hands” in people with essential tremor (ET) may benefit those with Parkinson’s disease.

People with essential tremor, a condition that has overlapping motor features with Parkinson’s disease, have a significant reduction in their quality of life, as everyday tasks such as drinking from a glass or tying shoelaces become challenging.

Estimates from 2012 indicate the disease affects around 2 percent of Americans. Its prevalence increases with advanced age, as the incidence in people over age 40 is approximately 23.7 per 100,000 per year.

ET, which is often misdiagnosed as Parkinson’s, is a progressive neurological disorder causing involuntary and rhythmic shaking, mainly in the hands. However, unlike Parkinson’s, which typically presents hand tremor at rest, hand tremor in ET often occurs when the hands are being used.

“My grandfather had this problem. Seeing a close person suffering from the condition, it becomes clear that any device which could reduce the symptoms would be of great assistance,” Mantas Venslauskas, CEO of the Lithuanian startup company Fidens and a scientist at Kaunas University of Technology (KTU), said in a press release.

ViLim Ball, developed by Fidens, is an advanced version of a vibro trainer. Venslauskas said he knows of only one similar technology to alleviate hand tremor, which is currently available in the U.S. The ViLim Ball technology may also improve hand stiffness in the morning, a typical manifestation of rheumatoid arthritis.

In addition to ViLim Ball, the researchers at KTU’s Biomechanics Laboratory have also been working on a technology to improve circulation in body extremities, which is relevant for rheumatoid arthritis patients. This work has been done in collaboration with scientists at the Lithuanian University of Health Sciences (LSMU).

In their joint effort with LSMU researchers, “we found out that the technology can also be used for tremor diminishing. Therefore, at Fidens we have created a thoroughly new technology and concept of a device for reducing hand tremor and stiffness,” Venslauskas said.

Tests of the ViLim Ball showed that it effectively reduces symptoms in seven out of 10 ET cases, and in nine out of 10 rheumatoid arthritis cases. The technology’s impact on physiological parameters is currently being evaluated, Venslauskas added.

In January 2018, Fidens released a beta version of ViLim Ball into the Lithuanian market with a price of 195 euros (about $238 U.S). Customer feedback will be critical toward improving the product. After additional testing and optimization, Fidens plans to sell the ViLim Ball in the U.S.

The company is also developing a wearable technology to decrease hand tremor in real time, a device that would be particularly relevant for Parkinson’s patients.

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Source: Parkinson's News Today