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Preparing for a Parkinson’s Hospital Stay

hospital stays

Sherri Journeying Through

Sooner or later, nearly all of us make a trip to the hospital for one reason or another. Just because you are placed in the hands of a capable physician doesn’t necessarily mean you will get the best care, especially if you have Parkinson’s disease. Following are some pointers to keep in mind for that emergency (or scheduled) trip to the hospital.

  • Keep an updated list of medications with you or make sure a caregiver knows where to find the information. Be sure the dosages are listed.
  • Bring someone who knows you well so they can communicate effectively with the staff on your behalf in case you’re unable.
  • Have a list of medications to avoid due to Parkinson’s disease.

Many patients are unaware that some common medications used for conditions such as headaches or gastrointestinal issues may block dopamine. Such medications have been associated with parkinsonism and the worsening of Parkinson’s disease.

Neuroleptics are used to manage symptoms of many psychiatric disorders. That can be a good thing if you need antipsychotic medication. However, for a person with Parkinson’s disease, their use can be life-threatening. 

Among the medications to be avoided are Compazine (prochlorperazine), Phenergan (promethazine), and Reglan (metoclopramide). Other meds, such as reserpine and tetrabenazine, may worsen Parkinson’s disease and should be avoided in most cases.

Having a list of forbidden meds could prove to be as valuable as your list of Parkinson’s meds. 

  • If you had deep brain stimulation surgery and have a rechargeable battery, it is important to bring your battery pack with you to be safe.

Hospital stays for Parkinson’s patients aren’t really all that different than for those without Parkinson’s. However, it’s important to remember that neglecting to discuss your drug regimen could be problematic. If you don’t neglect to do those two things, as a Parkinson’s patient, you’ve done what you can do to have the best stay possible. Enjoy that scrumptious green Jell-O!

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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.

The post Preparing for a Parkinson’s Hospital Stay appeared first on Parkinson’s News Today.

Finding Balance with Medications

balance

What is my strategy?

I plan to take Parkinson’s disease (PD) medications as prescribed to get me to a point where I can function well and really push hard in my exercise. Then, I hope that a combination of exercise, diet, meditation, yoga, and massage will help me to deal with my PD progression and symptoms.

Currently, I take Sinemet (carbidopa-levodopa) 25/100, two tablets, three times per day. With my doctor’s guidance, I am weaning off a daily 4 mg Neupro patch. Sinemet has alleviated my internal tremors. However, I am still extremely fatigued all of the time.

Do I really believe the medications are helping?

I have never had any “aha!” moments as a result of taking medications. It was never like “wow, I feel so much better now.” I don’t experience the “off time” that some have when the meds are wearing off shortly before the next dosage is due. So, I question how much the medications are really helping me.

Why do I want to reduce or halt my PD medications?

Opioids target the brain’s reward system by flooding the circuit with dopamine. In the late 1990s, pharmaceutical companies reassured the medical community that patients would not become addicted to prescription opioid-based pain relievers. They were wrong — there is currently an opioid overdose crisis in the U.S.

Although opioids get more media attention, abuse of benzodiazepines (benzos) is equally rampant. Benzos create surges of dopamine in the body. Since their introduction in the 1960s, this class of medications, which includes Valium (diazepam), Ativan (lorazepam), and Xanax (alprazolam), have been widely prescribed to treat anxiety and insomnia, alcohol withdrawal, and other conditions. These medications must be prescribed with caution because they can be addictive.

Levodopa, a component of Sinemet, may improve PD symptoms because it causes the body to make more dopamine. Neupro (rotigotine) patches work by delivering the dopamine agonist rotigotine through the skin directly into the bloodstream. Rotigotine stimulates dopamine receptors in the brain. This, in turn, mimics the action of dopamine, which is found in lower-than-normal levels in the brains of Parkinson’s disease patients.

My conclusion

From my simplistic, high-level view, I see a common denominator (dopamine) in the three categories of the medications mentioned above. Even though my brain may not be functioning properly due to PD, taking drugs that impact the brain does not sit well with me.

What will be said about PD medications in the future? I am not sure I want to find out. This is why I am choosing to wean off as many of the PD drugs that I can. I want to continue to seek balance and to pursue my more holistic approach to diet and exercise to tame the PD dragon.

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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.

The post Finding Balance with Medications appeared first on Parkinson’s News Today.

Depression May Aggravate Motor, Cognitive Symptoms in Newly Diagnosed Parkinson’s Patients, Study Reports

Depression in newly diagnosed Parkinson’s patients is associated with initial motor deficits and worse cognitive function, unrelated to dopamine loss, a study suggests.
These patients also require higher doses of medications at follow-up.
The study, “The presence of depression in de novo Parkinson’s disease reflects poor motor compensation,” was published in the journal PLOS ONE.
Early burden of non-motor symptoms, such as depression, is considered a relevant prognostic marker indicative of poor motor outcomes in Parkinson’s disease. Because motor symptoms only appear after marked degeneration of dopamine-producing neurons, scientists believe that significant motor system compensation occurs in these patients, providing a way to overcome dopamine loss.
Patients with de novo Parkinson’s — newly diagnosed and still untreated — with either olfactory dysfunction (loss of sense of smell) or rapid eye movement sleep behavior disorder have greater motor deficits than those without these symptoms, but they both have the same levels of dopamine, suggesting that the early presence of non-motor symptoms correlates with less compensatory ability.
The early occurrence of depression in de novo Parkinson’s indicates widespread involvement of pathological lesions, which may limit motor compensatory ability and lead to greater physical impairment. However, the link between depression and dopamine depletion in early Parkinson’s is still unclear.
Aiming to address this gap and to explore whether early occurrence of depression is associated with reduced motor compensation, researchers from Yonsei University College of Medicine in South Korea analyzed 474 patients, at a mean age of 64.6 years, including 242 men, with de novo Parkinson’s without dementia. The mean duration of their symptoms was 18.3 months.
The patients underwent positron emission tomography (PET) scans for the dopamine transporter (DAT) — responsible for the uptake of dopamine into neurons from the synapse, where neurons communicate — in the striatum, a key brain region involved in movement and cognition.
Depression was assessed using the Beck Depression Inventory, a 21-question multiple-choice self-report inventory composed of items related to symptoms of depression. Motor symptom severity was evaluated with Part III of the Unified Parkinson’s Disease Rating Scale, and the Mini-Mental State Examination was used to measure cognitive function.
Depression scores were divided into three levels: 157 patients, 55.4% of whom were women, were in the highest (worse) level (a score of 15 or greater, assumed to include only depressed patients); 159 patients, of whom 49.7% were women, were in the middle level (a score of 8-14); and 158, of whom 41.8% were women, were in the lowest level (7 or less, non-depressed patients only).
Patients in the highest level had more severe motor impairment and worse cognitive function than those in the lowest levels, even after taking DAT scan results into account.
Of note, no differences were found in DAT scores across the three groups, suggesting that “depression in de novo [Parkinson’s] does not require striatal dopamine depletion,” the researchers wrote.
Over a median follow-up of 47 months — ranging between four and 107 months — two movement disorder specialists adjusted the doses of Parkinson’s medications at three-to-six-month intervals.
Depressed patients required higher levodopa-equivalent doses — the amount of levodopa that has a similar effect as the medication taken — than non-depressed individuals after taking age, gender, and initial

Source: Parkinson's News Today

Some Thoughts About Treating Parkinson’s Disease

treated, neuroprotective medications

Sherri Journeying Through

Someone told you that you or someone you love has Parkinson’s disease (PD). You’ve also heard that it is incurable. Nevertheless, can it be treated? If so, what medicines are used?

First, let me say that I was diagnosed with PD over 10 years ago and misdiagnosed with lupus over 20 years ago. As stated earlier, Parkinson’s disease is not curable, but it is treatable, to a degree. Just maybe, the day you’ve reached your “last degree” will be the day they announce a cure.

No one I have ever met likes taking pills, and yet to treat Parkinson’s effectively, there is no way around it for the common patient. Patients must also understand that Parkinson’s disease affects each person differently, so each patient is treated differently and different medications will be used accordingly.

My drug therapy has been conservative, according to my neurologist. For example, one medication at a time is added at the time of my checkup, if needed. This is done so that the physician is able to correctly identify which medication a patient reacts to should side effects occur. This can be a much safer procedure than starting with eight pills, three times a day, and working backward.

Pharmaceutical companies would go out of business if they were not constantly coming up with improvements to the treatments already available on the market. That, in and of itself, says the medical field is making progress in creating treatments for PD and other diseases.

While I said earlier that PD is incurable, it is treatable. Treatable, however, will look different for you than it does for me or another patient. Some will be behind you in their progression of the disease, some ahead. It also depends on how each individual doctor believes or thinks the disease should be best treated. As you can see, many different factors come into play when a physician must come up with a custom treatment that best suits a patient.

Of the medications available that physicians choose for their patients, some of the more tolerated and beneficial seem to be Mirapex (although it is noted to have serious side effects for some), Sinemet, Artane, Requip, and Comtan. Doctors might add other various medications be added to the mix depending on a patient’s symptoms and needs. These could include Azilect, Lexapro or another antidepressant (as one of the first notable symptoms of PD is depression), and Symmetrel, etc.

Each patient is unique and different and, therefore, patients’ needs and reactions to their treatment will be different. What works for one may not be tolerated or work well for another. Hopefully, the drug treatment is scaled to your individual needs and will treat your symptoms, but only your doctor can decide with you what is best and what is needed. New steps are taken every day, and progress is made at nearly the same rate worked toward a cure. Until then, it is best for patients to follow their regimented treatments until something better comes along. It will if we all keep fighting and do not give up.

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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.

The post Some Thoughts About Treating Parkinson’s Disease appeared first on Parkinson’s News Today.

Source: Parkinson's News Today

My Struggles Worsen Despite Natural Treatment Experimentation

struggles

My body does not feel right. What am I going to do about it?

What has happened to me?

My quality of life was deteriorating due to my neurological issues. Along with poor fine motor skills on my left side and slowness of movement, I was constantly fatigued. This was a fatigue that no amount of quality sleep could ever satisfy. Additionally, I had internal tremors (not visible to the naked eye, but I always felt so weak and shaky). I thought for sure there must be some kind of “natural” solution to help cure what ailed me — one that did not involve prescription drugs.

My initial approach was to go to physical and occupational therapy and to continue my exercise regimen (weights, yoga, cycling, walking). This plan did not seem to slow disease progression or alleviate my symptoms. My depression and lack of motivation (other Parkinson’s disease symptoms) were also hindering me.

I can’t fight this alone, so drugs are an option

In March 2016, I finally agreed to try Azilect (rasagiline), a prescription medication. Two weeks later, my symptoms had not improved and I felt worse (dizzy and nauseous). So, off that medication and on to the next one, ropinirole. This time, it only took a few hours on the medication for me to become extremely sick with vomiting and a pounding headache. I immediately discontinued that medication.

Both my neurologist and primary care physician thought I should focus on treating my depression symptoms with a prescription medication. In August 2016, I tried Viibyrd (vilazodone HCI), an antidepressant. Within a few weeks, I was suffering from intense, gory nightmares every night with no improvement in my symptoms. At this point, I decided my PD symptoms may not be such a bad thing, and I refused to try any more medications.

I can’t fight this alone, but drugs are not an option

In October 2016, I attended a week-long workshop that focused on a plant-based diet. My diet needed a serious overhaul. The time was right to see if changing my eating habits would make a difference in the quality of my life. I was already a vegetarian, but I still loved my dairy products. I also loved sugar, pasta, and bread. These food items are known to potentially cause inflammatory responses in the body. Also, I have read that the neurodegeneration observed in PD is accompanied by inflammatory processes. If I added these two theories together, I believed a change to a gluten-free, no-sugar-added, vegan diet might help my PD symptoms.

A holistic doctor at the plant-based diet workshop I attended suggested I look into the Hinz Protocol for treating my PD. Dr. Marty Hinz developed an amino acid therapy that utilized natural dopamine powder from the Mucuna pruriens (velvet bean) plant in conjunction with other amino acids. I found a neurologist in New York City who endorsed this approach. After I returned home from the workshop, I maintained the strict diet and struggled with the Hinz Protocol. I say “struggle” because I suffered a lot of nausea. The doctor had to repeatedly adjust the dosages for the amino acid capsules and Mucuna pruriens powder to attempt to eliminate nausea and get symptom relief. Also, the cost of this protocol was hundreds of dollars per month and was not covered by insurance. I could handle the cost if my stomach had relief and my PD symptoms improved. However, that was not to be. After six months, I discontinued the Hinz Protocol.

The losses and the adjustments

I was starting to get very good at making adjustments when a PD symptom would impair me in some way. As an example, I find it difficult to put my coat on with my left sleeve first, so now I put my coat on with my right sleeve first. Or, since I can no longer feel where to put in my pierced earrings, I just make sure I have a mirror handy to see what I am doing. While waiting on a cashier’s line to check out, I make sure I have my money ready so I am not fumbling around in my purse and holding up the line. Wearing satin pajamas makes it easier to move around in bed at night. Being mindful of all my movements is critical so I do not trip, walk into things, or let things fall through my hands.

If my PD does not progress any further, I feel I can deal with the losses it has thrust upon me thus far. However, at times when I wake up in the morning, I think to myself, “What simple task will elude me today?” PD is a disease of loss, the loss of some of the most, mundane things in life many of us (including myself) take for granted. These include:

  • Holding a purse or newspaper firmly under the arm
  • Folding laundry
  • Tying shoes
  • Buttoning a shirt
  • Putting on a seat belt
  • Zipping a jacket
  • Opening a package
  • Cutting a salad

These are mindless tasks everyone does almost every day. Many of us with PD can no longer perform these daily rituals without assistance. If PD has not totally disabled us, some of us may still complete the task unassisted, but it requires intense concentration and focus on our part. It is almost as if we have reverted to being a child again.

Still struggling

It is now mid-2017. I continue to struggle with my worsening PD symptoms, and I am still not on any prescription medications.

All the “snake oil” solutions online make it even more difficult to find relief from my symptoms. On more than one of my PD-related blog posts, some unscrupulous individuals have responded with comments about the great herbal or vitamin supplement that has “cured” their PD. There are so many scammers out there, people and companies that prey on those who are so desperate for relief. I think I can speak for many of us with PD when I say we want to believe there is one thing that can help our symptoms or cure our disease, however, it is so difficult to separate what works and what doesn’t work.

Although I continue to exercise, meditate, and maintain my vegan diet, I fully realize I need more help.

Stop the roller coaster — I want to get off!

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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.

The post My Struggles Worsen Despite Natural Treatment Experimentation appeared first on Parkinson’s News Today.

Source: Parkinson's News Today

With Parkinson’s, Slow Is the New Fast

denial

There is no way I have Parkinson’s Disease (PD).

That river in Egypt (‘Da Nile’)

I will never forget the day I heard the words no one ever wants to hear: “You have an incurable, progressive disease.” Although I had two good friends with PD, I never thought we would have something like this in common.

In 2015, at my annual check-up, my primary care physician suggested I see a neurologist after I told her my handwriting was becoming illegible. Little did I know, this would mark the beginning of my PD journey. The first neurologist I saw told me I had PD but suggested I see a movement disorder specialist to confirm the diagnosis. Determined to prove him wrong, I made the appointment. After conducting the standard tests (which I felt were too subjective), she agreed with the first doctor’s diagnosis.

Still convinced that I did not have this disease, I sought out other medical opinions. After all, I ate well, exercised, and always got plenty of sleep — I did all the “right” things. How could I possibly be sick? Still in denial, I saw three other neurologists — all confirmed the PD diagnosis. One doctor prescribed a PET/CT scan of the brain, which offered further clinical proof of PD.

Medications … NOT!

Of course, the consensus of all the neurologists was that I should start taking prescription medication. Initially, I refused to follow their advice. I believed I could ease my symptoms through holistic measures, diet, physical and occupational therapy, and exercise.

I clearly remember what my life partner, Steve (lost to suicide), had dealt with while trying to find the right medications for his depression. There were numerous side effects and the multiple concurrent, prescribed treatments: “This drug doesn’t work, so add this drug to enhance the functioning of the first medication.” If there was still no improvement in symptoms, medication dosage would increase. Then there was the medication’s loss of efficacy over time. It could also take weeks or months to know if the drug was going to help. Even further alarming was that some of the side effects (suicide in the case of some antidepressants) were what the medication was trying to alleviate.

From what I read about PD medications, it seemed like I would experience a very similar situation to what Steve went through.

Am I depressed, or do I have PD?

Although I refused to take medications to alleviate my symptoms, I still continued my exercise routine (walking, yoga, weights, cycling). However, I was on high alert for changes in my body.

Other strange things were happening to me that I could not explain. While volunteering at a race, I was rolling posters for athlete giveaways. I could not understand why the other staff could roll five posters to my one. Why was I so slow at performing such a simple task? Rolling around in bed at night became a chore, and I felt I needed a forklift to change positions! My left foot kept falling out of my slip-on shoes. I had trouble keeping the shoe on, especially when going upstairs. Fatigue and lack of motivation plagued me.

Could these symptoms be attributed to situational depression that resulted from Steve’s suicide, or was it PD? Should I consider medications for depression or PD?

A blessing and a curse

Having been an athlete most of my life — tennis player, weight trainer, roller-skater, race walker, dancer, and cyclist — I was very much in tune with my body and in touch with its capabilities. This has been both a blessing and a curse. The discipline to work out, along with the muscle memory I have built over the years, is serving me well in fighting PD. However, I am also very aware of how much ability I have lost. Before PD, my balance was excellent. Now it is probably closer to what someone my age has now. However, my frustration level is so high since I still expect to be able to accomplish what once came so naturally to me.

Where I was once strong, fluid, and graceful, I now feel weak, inflexible, rigid, and non-rhythmic. Most people who look at me see no signs of PD. However, I know what I have lost, and for me, that loss is huge.

Although I sometimes wish I had never been an athlete (you don’t know what you’ve got until its gone), I do accept that my years of training and athletics will be my saving grace in fighting this disease.

(Photos courtesy of Jean Mellano)

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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.

The post With Parkinson’s, Slow Is the New Fast appeared first on Parkinson’s News Today.

Source: Parkinson's News Today

Survey Shows Canadian Parkinson’s Community’s Key Concerns

Canadian Parkinson's survey

Long waits for diagnosis, limited access to specialized treatments and services, and out-of-pocket healthcare costs are among key concerns of Parkinson’s patients, caregivers, and medical-service providers, according to a Parkinson Canada survey.

The organization created the 30-minute online survey to better understand the challenges that patients, caregivers, and providers face. It was conducted between Sept. 29 and Oct. 24, 2017.

Fifty-seven percent of the patients who participated were men, and most were aged 65-74 years. About four in five were married or living with a partner. Seven in 10 were retired.

An important finding was that patients face long waits for a diagnosis, with two out of 10 saying they waited over one year. Almost one in four patients classified their ability to gain access to medical specialists as poor or very poor. Sentiment was similar on accessing movement disorder clinics, a Parkinson’s nurse specialist, and long-term care facilities.

Three in five patients said they needed additional information from Parkinson Canada or one of its support groups. Four in 10 reported depression, anxiety, stress, sadness, and loss of confidence. Access and waiting times for mental health services were a problem for many patients.

In contrast, nine of 10 patients and caregivers rated access to oral treatments and to a family doctor as good, very good or excellent.

Providers were more critical. Over half reported poor or very poor access to movement disorder clinics, and three out of 10 rated access to speech and swallowing therapy as poor or very poor.

Providers were even more negative on waiting times for specialized services and treatments, with four in 10 rating them as poor or very poor.

The patient barriers that providers mentioned included too few medical specialists, limited information and understanding of Parkinson’s, scarce availability of educational resources, insufficient counseling resources, and too few support groups.

The findings also showed the toll that Parkinson’s takes on caregivers. More than one in four reported that they care for a patient while having a full-time job. Seventy-seven percent of caregivers were women and most were aged 75 years or older.

Nearly half of caregivers said access to long-term care facilities was poor or very poor. They were also concerned about access to movement disorder clinics, Parkinson’s nurse specialists, and mental health services.

Among the health problems that caregivers experienced were stress, exhaustion and feeling guilty that they were not doing enough. They also mentioned frustration towards the patient, helplessness and anxiety.

“People with Parkinson’s often suffer from complex physical and non-motor [non-movement] health disorders, which can affect the whole family,” Joyce Gordon, the CEO of Parkinson Canada, said in a press release. “We know that caregivers are heavily burdened, financially and emotionally. Our mission is to help close the gap for them and build awareness of Parkinson’s.”

The disease also represents a significant financial burden. Four in 10 respondents reported difficulty paying health care bills, including medication, exercise, physiotherapy, and speech and swallowing therapy.

About three-fourths of patients and care partners reported paying for exercise programs. Forty-four percent said they paid for physiotherapy and a third said they paid for at least one type of medication. Four out of 10 said paying for medication imposes a major financial burden on them if it’s not reimbursed by insurers.

Three out of four care providers perceived medication and other therapies as a major burden without financial assistance

“It’s important that individuals receive a correct diagnosis as early as possible and have adequate access to ongoing specialized care. Even this care is limited and follow-up visits are too far apart,” said David Grimes, lead author of the “Canadian Guidelines on Parkinson’s Disease.

“If the survey shows that Canadians are experiencing considerable gaps and delays to care, this hinders [providers] from effectively recommending treatments and lifestyle changes that would help patients better manage the disease,” he said.

Parkinson Canada plans to share the survey results with governments and others during Parkinson Awareness Month in April. The goal is to raise awareness as a way of improving access and decreasing wait times. It will also share the information with the public and donors.

It called for more effort on research and services for Parkinson’s at a time when healthcare demand is increasing as the population ages. It also called for more investment to provide medical professionals with educational opportunities and healthcare resources.

The post Survey Shows Canadian Parkinson’s Community’s Key Concerns appeared first on Parkinson’s News Today.

Source: Parkinson's News Today