Irish entrepreneur uses technology to fight PD

Ciara Clancy is no ordinary entrepreneur, with her company Beats Medical far less concerned with making money than it is with helping people live with various neurological conditions.

At the age of just 29, Ciara Clancy’s work in helping people to live with the likes of Parkinson’s disease, Alzheimer’s, dyspraxia and the effects of stroke are unparalleled on the island of Ireland.

Speaking to host Tadhg Enright on this week’s The Architects of Business, in partnership with EY Entrepreneur Of The Year™, Ciara reveals the reason why she left behind her career as a physiotherapist.

A highly driven and passionate individual, Ciara wanted to create technology – based on Metronome Therapy, which helps Parkinson’s sufferers in particular – that would make it as easy for those living with these life-changing conditions to get around at home as it would be under medical supervision.

“I remember the exact moment that I decided I wanted to found Beats Medical,” Ciara – a 2016 finalist in the EY Entrepreneur Of The Year™ programme – reveals.

“A person with Parkinson’s disease was coming into me for this Metronome Therapy in a hospital, and he was 20 minutes late and I went out to find him stuck, frozen at the main entrance.

“And this was happening everywhere we went, every door he went through, and I knew that when he came into clinic he walked very well with Metronome Therapy but he’d go home and this would persist, and it was at that point I said I can’t go 20 years into my career and not try. I need to find a way to bring this treatment into the home.

“That’s when I decided to step out of my career as a physio and volunteer with a Parkinson’s charity to understand needs outside of the hospital. And really that’s how Beats Medical was born.”

Article from JOE.ie.

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Long-Distance Caregiving: Tips for Success

Know What You Need to Know

Experienced caregivers recommend that you learn as much as you can about your family member or friend’s illness, medicines, and resources that might be available. Information can help you understand what is going on, anticipate the course of an illness, prevent crises, and assist in healthcare management. It can also make talking with the doctor easier. Make sure at least one family member has written permission to receive medical and financial information. To the extent possible, one family member should handle conversations with all healthcare providers. Try putting all the vital information in one place—perhaps in a notebook or in a shared, secure online document. This includes all the important information about medical care, social services, contact numbers, financial issues, and so on. Make copies for other caregivers, and keep the information up to date.

Plan Your Visits

When visiting your loved one, you may feel that there is just too much to do in the time that you have. You can get more done and feel less stressed by talking to your family member or friend ahead of time and finding out what he or she would like to do. Also, check with the primary caregiver, if appropriate, to learn what he or she needs, such as handling some caregiving responsibilities while you are in town. This may help you set clear-cut and realistic goals for the visit. For instance, does your mother need to get some new winter clothes or visit another family member? Could your father use help fixing things around the house? Would you like to talk to your mother’s physician? Decide on the priorities and leave other tasks for another visit.

Remember to Actually Spend Time Visiting with Your Family Member

Try to make time to do things unrelated to being a caregiver. Maybe you could find a movie to watch with your relative, or plan a visit with old friends or other family members. Perhaps they would like to attend worship services. Offer to play a game of cards or a board game. Take a drive, or go to the library together. Finding a little bit of time to do something simple and relaxing can help everyone, and it builds more family memories. And keep in mind that your friend or relative is the focus of your trip—try to let outside distractions wait until you are home again.

Get in Touch, and Stay in Touch

Many families schedule conference calls with doctors, the assisted living facility team, or nursing home staff so several relatives can participate in one conversation and get up-to-date information about a relative’s health and progress. If your family member is in a nursing home, you can request occasional teleconferences with the facility’s staff. Sometimes a social worker is good to talk to for updates as well as for help in making decisions. You might also talk with a family member or friend in the community who can provide a realistic view of what is going on. In some cases, this will be your other parent. Don’t underestimate the value of a phone and email contact list. It is a simple way to keep everyone updated on your parents’ needs.

Help the Person Stay in Contact

For one family, having a private phone line installed in their father’s nursing home room allowed him to stay in touch. For another family, giving Grandma a cell phone (and then teaching her how to use it) gave everyone some peace of mind. These simple strategies can be a lifeline. But be prepared—you may find you are inundated with calls or text messages. It’s good to think in advance about a workable approach for coping with numerous calls.

Learn More About Caregiving

Whether you are the primary caregiver or a long-distance caregiver, getting some caregiving training can be helpful. As with a lot of things in life, many of us don’t automatically have a lot of caregiver skills. For example, training can teach you how to safely move someone from a bed to a chair, how to help someone bathe, and how to prevent and treat bed sores, as well as basic first aid. Information about training opportunities is available online. Some local chapters of the American Red Cross might offer courses, as do some nonprofit organizations focused on caregiving. Medicare and Medicaid will sometimes pay for this training.

Gather a List of Resources in the Care Recipient’s Neighborhood

Searching the Internet is a good way to start collecting resources. Check with a local library or senior center, the Area Agency on Aging, or the Eldercare Locator to find out about sources of help.

Information from Today’s Caregiver.

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Study Reveals Mechanisms Underlying Pain Processing in PD

Parkinson’s disease is a condition affecting the human brain that becomes worse over time. The most common symptoms are tremors, muscle spasms and movements that are much slower than normal; all of which decrease an individual’s quality of life. Although there is currently no cure, the brain structures involved in Parkinson’s disease are known. These are collectively termed the basal ganglia, and are often targeted to treat the symptoms of Parkinson’s disease. For example, electrically stimulating the subthalamic nucleus (STN), one part of the basal ganglia, reduces muscle tremors and stiffness.

Pain is another common symptom in Parkinson’s disease. Patients often report strange burning or stabbing sensations with no obvious physical cause. They are also likely to be more sensitive to painful stimuli and have a lower pain threshold than normal. This suggested that the brain circuits that allow us to perceive and process pain could be somehow involved in Parkinson’s disease. Indeed, stimulating the STN is known to relieve pain in Parkinson’s disease, as well as the muscle symptoms, but exactly how the STN might link up with the brain’s ‘pain network’ remains poorly understood. Pautrat et al. therefore set out to explore the connection between pain networks and the STN, and determine its potential role in Parkinson’s disease.

First, the electrical activity of nerve cells in the STN of rats was measured, which revealed that these cells do respond to mildly painful sensations. Experiments using dyes to label cells in both the STN and brain structures known to transmit painful signals showed that the STN was indeed directly linked to the brain’s pain network. Moreover, rats with a STN that did not work properly also responded abnormally to painful stimuli, confirming that the STN did indeed influence their perception of pain. Finally, Pautrat et al. repeated their measurements of electrical activity in the STN, this time using rats that lacked the same group of nerve cells affected in the basal ganglia of patients with Parkinson’s disease. Such rats are commonly used to model the disease in laboratory experiments. In these rats, the STN cells responded very strongly to painful stimuli, suggesting that problems with the STN could be causing some of the pain symptoms in Parkinson’s disease.

This work reveals a new role for the STN in controlling responses to pain, both in health and disease. Pautrat et al. hope that their results will inspire research into more effective treatments of nerve pain in both Parkinson’s disease and other neurodegenerative conditions.

To learn more about this work, visit elifesciences.org.

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Protein might become candidate for drug development

Researchers have modified the protein Nurr1 so that it can enter cells from the outside. Nurr1 deficiency may be one of the causes of Parkinson’s disease. Even though Nurr1 has been discussed as a potential target for the treatment of Parkinson’s disease, it is unusable in its normal form, as it cannot penetrate cells. A team from Ruhr-Universität Bochum and the US-American National Institutes of Health (NIH) deployed a bacterial import signal in order to deliver Nurr1 into cells. The researchers also demonstrated that the modified protein may have a positive effect on the survival of dopamine-producing nerve cells. They describe their results in the journal Molecular Neurobiology from 18 August 2018.

For the study, Dennis Paliga, Fabian Raudzus, Dr. Sebastian Neumann, and Professor Rolf Heumann from the work group Molecular Neurobiochemistry collaborated with Professor Stephen Leppla from the NIH.

Bacterial protein building block as import signal

Nurr1 is a transcription factor; this means the protein binds to DNA in the nucleus and regulates which genes get read and translated into proteins. Thereby, it controls many properties in cells that produce the neurotransmitter dopamine and that are affected in Parkinson’s disease. Dopamine withdrawal in certain brain regions is responsible for the slowness of movement that is associated with the disease.

Since the Nurr1 protein does not usually have the capability of entering cells and, therefore, cannot take effect in the nucleus, the researchers were searching for ways of furnishing the protein with an import signal. They found what they were looking for in bacteria and attached a fragment of a protein derived from Bacillus anthracis to Nurr1. In the bacterium, that protein ensures that the pathogen can infiltrate animal cells. “The fragment of bacterial protein that we used does not trigger diseases; it merely contains the command to transport something into the cell,” explains Rolf Heumann. Once the modified protein has been taken up by the cell, the bacterial protein building block is detached, and the Nurr1 protein can reach its target genes by using the cell’s endogenous nuclear import machinery.

Nurr1 has a positive effect on the key enzyme of dopamine synthesis

The researchers measured the effect of functional delivery of Nurr1 by monitoring the production of the enzyme tyrosine hydroxylase. That enzyme is a precursor in dopamine synthesis – a process that is disrupted in Parkinson’s patients. Cultured cells that were treated with modified Nurr1 produced more tyrosine hydroxylase than untreated cells. At the same time, they produced less Nur77 protein, which is involved in the regulation of programmed cell death.

Protein protects from the effects of neurotoxin

Moreover, the researchers tested the effect of modified Nurr1 on cultured cells that they treated with the neurotoxin 6-hydroxydopamine. It causes the dopamine-producing cells to die and is thus a model for Parkinson’s disease. Nurr1 inhibited the neurotoxin-induced degeneration of cells.

“We hope we can thus pave the way for new Parkinson’s therapy,” concludes Sebastian Neumann. “Still, our Nurr1 fusion protein can merely kick off the development of a new approach. Many steps still remain to be taken in order to clarify if the modified protein specifically reaches the right cells in the brain and how it could be applied.”

Article from Ruhr University Bochum.

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Characterization of Parkinson Disease With Restlessness

Highlights

  • A study was conducted of restless leg syndrome, leg motor restlessness, and their variants in Parkinson disease and related disorders.
  • A total of 49.2% of PD patients had any restlessness, including RLS and LMR.
  • LMR variants and RLS variants are rare in PD and related disorders.
  • PD with restlessness was related to autonomic, sleep and depressive symptoms.

Objective
The objective of this study was to investigate the prevalence of restless leg syndrome (RLS), leg motor restlessness (LMR) and RLS/LMR variants and their relationship with clinical factors in patients with Parkinson’s disease (PD) and related disorders.

Methods
Sixty-three PD patients, 17 multiple system atrophy (MSA) patients and 11 progressive supranuclear palsy (PSP) patients were included in this study. Through face-to-face interviews, the patients were diagnosed with RLS/LMR, or with RLS/LMR variants in which the symptoms occur predominantly in body parts other than the legs.

Results
The frequency of RLS, LMR, RLS variants and LMR variants was as follows: PD (12.7%, 11.1%, 0% and 1.6%); MSA (5.9%, 11.8%, 0% and 0%); and PSP (0%, 9.1%, 0% and 0%). Restlessness without the urge to move was observed in 25.4% of the PD patients, 11.8% of the MSA patients and 0% of the PSP patients. The PD patients with restlessness exhibited higher Hoehn and Yahr stages and higher scores on the Scales for Outcomes in PD-Autonomic, PD sleep scale-2 and Beck Depression Inventory-II. The olfactory functioning, 123I-MIBG myocardial scintigraphy uptake and dopamine transporter single photon emission computed tomography findings did not differ between the PD patients with restlessness and those without. The severity of RLS was correlated with the autonomic symptoms among the PD patients with restlessness.

Conclusion
PD with restlessness was characterized by increased autonomic, sleep and depressive symptoms. Further studies including a large sample are warranted to characterize restlessness in PD and related disorders.

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How to Date when you have Parkinson’s

In my wildest imagination, I never would have predicted that I’d be in my 50s, single, living with Parkinson’s and living on long-term disability. Nevertheless, here I am. I was diagnosed in 2008 and became single again in 2015. That same year, I relocated my newly single self to a new state. I had family nearby, but otherwise, I knew no one.

Determined that my life would not be defined by Parkinson’s, I set out to live the best life I could. My priorities were to establish a community of friends and a new team of healthcare providers, to get my finances in order and to create a full and happy single life.

I socialized and made friends, but I specifically avoided group or one-on-one settings that hinted of dating. I wasn’t yet comfortable enough with my new single life.

While all of these priorities require ongoing attention, after about a year I felt sufficiently comfortable in this new life to consider the possibility of dating. I was feeling happy, and that set the foundation for me to enjoy romantic companionship as a nice addition to my life.

While online dating was unfamiliar territory, it seemed like the most straightforward way to meet someone. When I set out to compose my dating profile, I considered starting with “Unemployed, single woman with an incurable, progressive neurodegenerative disease seeks…..”

I decided that wasn’t the way to go, even though I got a good chuckle out of it.

When I met the first compatible guy, I had some genuine discomfort with not knowing exactly how or when to share my diagnosis. I felt vulnerable laying out my cards like that, but I also knew that avoiding vulnerability wasn’t an option if I wanted to live my life to its fullest potential.

So having Parkinson’s became just one of many things I’d share. One more “are we compatible” question to be answered in time. Mr. Compatibility never blinked when our plan to walk around the park became a walk to the nearest bench. And he was understanding if I canceled our plans because I was hit with a bout of fatigue. When we stopped dating after a few months, it was not because of Parkinson’s.

Since my re-entry into dating, I’ve had a dozen or so coffee or happy hour first dates and a couple of months-long relationships. I learn more about myself with every coffee, chat or relationship. People are endlessly fascinating, and each guy I meet teaches me something.

Because I believe that a relationship could enhance my life, I’ll keep at it. My father taught me that there are four relationships states in reverse priority order: Unhappily coupled, unhappily single, happily single and happily coupled.

I’ll admit that I still occasionally wonder why anyone would choose to be with someone who has Parkinson’s. Fortunately, the times I’ve asked that aloud have been to my therapist, family or friends. In other words, people who know my inherent worth. I believe that all human beings are worthy of being loved even though I, too, need a periodic reminder. Fortunately, I also know that everyone, without exception, suffers from their insecurities and that those come front and center when dating.

Over time, I’ve learned the value of packing up my insecurities and choosing to play the game rather than taking my ball and going home. After all, dating is just that. Dating. I don’t go on a first date thinking this is my next husband. I agree to go on a date because I think I might enjoy this person’s company.

My plan, for now, is to continue dating as opportunities present themselves, and I’ll remain open to the possibility of being happily coupled while continuing to live the life I love and enjoying my “happily single status.”

Article from Davis Phinney Foundation.

Other resources on dating with Parkinson’s:
Forming New Relationships
5 Tips for Singles with Parkinson’s
Advice on Dating after a PD Diagnosis

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