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Parkinson’s Foundation Q&A Provides Guidance From Experts on COVID-19

COVID-19 and Parkinson's

While there’s no evidence that people with Parkinson’s disease are more susceptible to contracting illness, COVID-19 tends to be more severe in the elderly and those with chronic diseases. Because of this, patients should take extra precautions to avoid contracting the disease, experts say.

In response to the COVID-19 pandemic, the Parkinson’s Foundation (PF) recently presented a live online question-and-answer event featuring Michael S. Okun, MD, the nonprofit’s medical director, and Fred Southwick, MD, an author and infectious disease expert. Both physicians are from the University of Florida Health, a PF Center of Excellence.

A video of the discussion may be viewed here.

In an overview of COVID-19, the experts emphasized that the highly infectious novel virus should be taken very seriously, particularly since most Parkinson’s patients are middle age at diagnosis.

“I’ve been studying infectious diseases for over 40 years, and I have to tell you this is by far the most dangerous virus that I’ve encountered and the worst epidemic in my career,” Southwick said during the discussion.

Still, it’s vital for Parkinson’s patients of all ages to remain calm during the outbreak and take preventive measures.

“You can’t panic,” he said. “You should respect this virus and you should follow the infection control protocol.”

According to the foundation, key steps include frequent hand washing, staying home and practicing social distancing, rescheduling non-urgent doctor appointments, obtaining three-months’ worth of medication supplies, talking with healthcare providers before bringing home a family member from a nursing facility, avoiding flights and travel, and getting pneumonia and flu vaccines.

To minimize “cabin fever” during prolonged periods at home, patients are encouraged to call or do video chats with family and friends often, and take walks. Those who do get sick should alert their doctor’s office before a visit so staffers are prepared to protect the patient and others.

According to Okun, in general, the Parkinson’s immune system is similar to that of individuals who don’t have Parkinson’s.

“Some of the cells that are part of the immune response in Parkinson are a little different … and we’re using that to understand Parkinson and engineer therapies,” he said. “But the immune system functions in a relatively normal way.”

One problem, however, is that Parkinson’s patients are more susceptible to lung infections that can make it hard to take deep breaths. Because COVID-19 attacks the respiratory system, individuals with Parkinson’s are at a higher risk.

“The danger is in the respiratory tract, and unfortunately, the muscles and the gag reflex and cough reflex in Parkinson’s patients can be impaired,” Southwick said. “So if they get this infection, because of the physical constraints, they are at higher risk. If you can’t take deep breaths, it’s harder to oxygenate.”

Furthermore, the experts said most over-the-counter cold and flu medications are generally safe to use with Sinemet (levodopa-carbidopa), an approved Parkinson’s therapy that increases dopamine levels in the brain to help with motor function. They cautioned, though, that monoamine oxidase-B inhibitors — molecules that modify metabolic pathways that lead to the breakdown of dopamine — should not be mixed with dextromethhorphan, common in many cough syrups. Patients who have hypertension should avoid medications that contain the decongestant pseudoephedrine.

In general, Parkinson’s and medicines used to treat it lower blood pressure. Patients who may have been exposed to the coronavirus should watch out for fainting or dizziness when standing or otherwise changing position. In any case, it’s important to establish the cause before beginning treatment.

Despite widespread reports, Okun and Southwick said there is no evidence that ibuprofen worsens COVID-19, but that if patients have concerns, they may consider Tylenol or another alternative.

They also suggest that, in lieu of in-person exercise classes and support groups, patients exercise safely at home, and use online resources such as the PF YouTube channel and PD Conversations.

For further questions about COVID-19 and Parkinson’s, call the Parkinson’s Foundation’s helpline specialists at 800-4PD-INFO. Go here for the PF’s latest information on the coronavirus.

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Sheltering in Place Is Harder Than I Anticipated

shelter in place

Today’s news is yesterday’s news, and I am sick of yesterday’s news. I am more disturbed by the news now than I was five minutes ago. Let me clarify. 

This news — specifically about the coronavirus — didn’t affect me as much before. I have been living in a bubble, and my bubble just burst. I have been living as if the coronavirus won’t ever get me. As if I were invincible. I’ve been living with the mindset that nothing will get past me and wreak havoc on my family, friends, or me. Not even this giant that I can’t see. 

But moving past this virus doesn’t necessarily mean contracting the virus, getting sick, and recovering. I just found out it can mean so much more. It is bigger than anything I anticipated.

We can feed off each others’ fears, eventually making them our own. As people with Parkinson’s, we don’t need more to worry about, thank you very much. Thankfully, I haven’t taken fears others are struggling with and made them my own.

However, getting past this virus may be harder than I anticipated. I didn’t expect to get a phone call from one of my kids who thinks it best to hole up at home with his family as much as possible. They are sheltering in place.

That means no grandson for possibly three weeks or more. I realize my family is not trying to snatch my grandkids away from me. My son is merely sheltering his family. Instead of catering to Grammy’s whims and wishes, he is taking his family under his wing and protecting them until this storm is over. I am proud of him but I am angry at this virus. 

It reminds me somewhat of Parkinson’s. The virus and the disease do as they please, giving no thought to what we may want. 

We have to “shelter in place” in our life with Parkinson’s. We have to take precautions to not overdo it, to keep our immune systems as healthy as possible, to try to keep up with our exercise programs at home, and to stay connected to others as much as we can (via FaceTime, telephone, etc.) until this is over. Because today’s news could very well still be tomorrow’s news.

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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 Sheltering in Place Is Harder Than I Anticipated appeared first on Parkinson’s News Today.

We Are Shut In, Not Shut Out

shut in

My chronic disease has forced me to stay home for a week after an exhausting recent trip to St. Louis. When my symptoms force me to curtail engagement outside the home, I become a “shut-in.”

Many are entering voluntary home confinement due to COVID-19. People also are experiencing mandatory lockdowns by decree in several states. Confinement is probably a new and uncomfortable experience for many, but the chronic disease community has learned to live with restricted access without shutting out the world. We have a pool of wisdom that can help people with this difficult adjustment.

Following are tips to help with this forced — but temporary — confinement.

Stay home, but stay engaged

Embrace your responsibility to help curb COVID-19. Practice social distancing and disinfect your hands and hard surfaces. Reach out when necessary to secure food and shelter for you and your family. Respect the mandatory lockdown requirements for nonessential tasks and travel. Support essential workers in the community who are vital to maintaining our health.

Find ways to stay connected with co-workers, friends, and family despite social distancing. Use the internet or your phone, but don’t stay glued to the screen. Pick one block of time every day to get news updates. Constant and relentless news will only escalate your emotions. Being informed is important; being overwhelmed is not.

Patience and communication are key

Realize that working from home is different than relocating to another building for work. Be patient with yourself and the people around you as you adjust. Keep a regular schedule as much as you can. It is often tempting to work all of the time. Schedule meals, family time, and activities into your day, just as you have before. It takes time to adjust to the disruption of our “normal” work routine.

If you live with other people, you must spend more time on communication. Personal space becomes a priority. Set aside a place in your home that is your private space and communicate that boundary to the people living with you. Access that space when you need to but don’t get lost there.

Live well

Make time for threshold management. Emotions surrounding COVID-19 can easily escalate to mass hysteria. It is easy to become emotionally overwhelmed, but only you can quiet your mind during a lockdown. Remember, this is temporary. Just put one foot in front of the other and stay safe.

Social distancing is an opportunity to engage in activities you’ve always wanted to do but never had the time. I retrained my eyes to use eccentric viewing automatically, which took hundreds of hours. Pick something important, something that will lift your spirits, and something that will improve your quality of life. You are shut in, not shut out. You may be locked down but not locked out of contact.

Maintain healthy life habits. Try not to let stress trigger a regression to old, unhealthy habits. Eat well, exercise, rest, and use windows, patios, and decks to get a daily dose of sunshine and fresh air.

These are difficult times. Most people don’t have the experience of being forced into home confinement by a disease, but the chronic disease community has a wealth of experience with such matters. Hopefully, this column will generate shared wisdom about being shut in and not shut out. We can help during this crisis. Please send this column to everyone you know and post it on social media.

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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 We Are Shut In, Not Shut Out appeared first on Parkinson’s News Today.

Dyskinesia Trial Testing Dipraglurant Postponed Due to COVID-19

dipraglurant trial postponed COVID-19

Phase 2/3 trial (Study 301) testing Addex Therapeutic’s candidate dipraglurant for people with levodopa-induced dyskinesia associated with Parkinson’s disease (PD-LID) has been postponed — until further notice — due to the continued spread of COVID-19 in Europe and the U.S., where the trial was set to occur.

The intended patient population for this trial is among those with the highest risk for severe illness and death associated with the new coronavirus. As such, Addex is following the guidance of public health authorities that recommend people at high risk stay at home and avoid unnecessary exposure to COVID-19.

“As the situation with COVID-19 has evolved, we have stayed in close communication with study sites, vendors and colleagues and learned of new institutional precautions being put in place for clinical research,” Roger Mills, MD, chief medical officer of Addex Therapeutics, said in a press release.

“Sites are temporarily suspending on-site visits for monitors, vendors, and all other non-patient visitors and several sites have cancelled all non-essential patient visits,” Mills said.

“Priority is now rightly being placed on how to manage regular care for patients in the light of the increasing COVID-19 containment requirements,” he said. “We care about the well-being of all PD patients and do not wish to have them make the additional visits to doctors’ offices that are required in a clinical study, putting them at increased risk of contracting COVID-19.”

One of the gold standards in Parkinson’s treatment has long been therapy with levodopa, or L-DOPA — a precursor to the neurotransmitter dopamine, the increasing loss of which is a hallmark of the disease. However, levodopa therapy can lead to uncontrollable movements, a condition called levodopa-induced dyskinesia, or LID.

Dipraglurant is a new oral small molecule that inhibits the metabotropic glutamate receptor 5 (mGluR5), which has been shown to play a role in LID. The candidate therapy has a pharmacokinetic profile — meaning, its absorption, distribution, metabolism, and excretion in the body — that mimics the profile of levodopa, making it a potential treatment for LID.

The previous Phase 2 ADX48621-201 trial (NCT01336088) assessed the safety and tolerability of dipraglurant in 76 people with Parkinson’s and moderate-to-severe LID. The participants were randomly assigned to receive dipraglurant (from 50 mg once daily to 100 mg three times daily, 52 patients) or a placebo (24 patients).

The results showed that dipraglurant was in general safe. Moreover, it reduced PD-LID clinical symptoms, as measured by the modified Abnormal Involuntary Movement Scale, on day 1 (50 mg) and on day 14 (100 mg), and across a three-hour post-dose period on day 14. Treatment with dipraglurant did not worsen Parkinson’s symptoms.

Addex is continuing to work with the study sites to continue preparations so as to start the study as soon as it is “appropriate to do so.”

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