Welcome to Our Parkinson's Place
I copy news articles pertaining to research, news and information for Parkinson's disease, Dementia, the Brain, Depression and Parkinson's with Dystonia. I also post about Fundraising for Parkinson's disease and events. I try to be up-to-date as possible. I have Parkinson's diseases as well and thought it would be nice to have a place where updated news is in one place. That is why I began this blog.
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Saturday, May 27, 2017
Posted: May 26, 2017
Intermountain Medical Center can provide individual care to slow progression
Traumatic experience can trigger symptoms of Parkinson's Disease at anytime: MURRAY, Utah (ABC4 Utah) -- Parkinson's disease is a progressive disorder of the nervous system that affects movement. It develops gradually, sometimes starting with a barely noticeable tremor in just one hand. But while a tremor may be the most well-known sign of Parkinson's disease, the disorder also commonly causes stiffness or slowing of movement.
MURRAY, Utah (ABC4 Utah) -- Parkinson's disease is a progressive disorder of the nervous system that affects movement. It develops gradually, sometimes starting with a barely noticeable tremor in just one hand. But while a tremor may be the most well-known sign of Parkinson's disease, the disorder also commonly causes stiffness or slowing of movement.
In the early stages of Parkinson's disease, your face may show little or no expression, or your arms may not swing when you walk. Your speech may become soft or slurred. Parkinson's disease symptoms worsen as your condition progresses over time.
Although Parkinson's disease can't be cured, medications may markedly improve your symptoms. In occasional cases, your doctor may suggest surgery to regulate certain regions of your brain and improve your symptoms.
59-year-old Mike Sommercorn of Murray was diagnosed more than a year ago. He noticed uncontrollable tremors in his right hand.
What Dr. Katherine Widnell at Intermountain Medical Center Neurosciences Institute immediately sees too is Mike's arm doesn't swing when he walks.
Dr. Widnell, "If you have slowness on one side of your body, that's not normal signs of aging, you need to get it checked out we can treat with medication."
What his family sees is the extreme fatigue.
Patricia Sommercorn, "he was fast forwarding through a commercial and fell asleep doing it."
Some patients may feel more stiffness, others the tremors are more predominant.
You may also notice a lack of facial expression.
Patricia, "when we took passport pictures for our cruise he thought he was smiling but he wasn't. Dr. Widnell says he needs to practice in the mirror to feel how big he has to smile. In my words he's aged 10 years in 1 year. You look forward to that retirement age and going off doing fun things. I think a lot of things we looked forward to we won't be able to do."
Dr. Katherine Widnell is a movement disorder specialist at the Intermountain Medical Center Neurosciences Institute. She's helping Mike slow the progression of Parkinson's
and manage symptoms through exercise and medication.
Dr. Widnell, 'my job is to treat them well enough with medication so they can do the activity that will actually slow the progression."
Doctors don't know the cause of Parkinson's but a stressful or traumatic event can trigger symptoms.
Patricia says the shaking became apparent right after the death of a grandson.
Dr. Widnell, "stress and anxiety and sleep deprivation always make tremor worse."
Mike, "I try not to let it affect my everyday life. It's not an immediate death sentence, it's a type disease where the quality of life that goes down."
The couple is learning to take one day and one symptom at a time.
Patricia, "it's important to find the joy in the time that you have and don't let the impact of the disease take over."
Parkinson's disease symptoms and signs may vary from person to person. Early signs may be mild and may go unnoticed. Symptoms often begin on one side of your body and usually remain worse on that side, even after symptoms begin to affect both sides.
Parkinson's signs and symptoms may include:
- Tremor. A tremor, or shaking, usually begins in a limb, often your hand or fingers. You may notice a back-and-forth rubbing of your thumb and forefinger, known as a pill-rolling tremor. One characteristic of Parkinson's disease is a tremor of your hand when it is relaxed (at rest).
- Slowed movement (bradykinesia). Over time, Parkinson's disease may reduce your ability to move and slow your movement, making simple tasks difficult and time-consuming. Your steps may become shorter when you walk, or you may find it difficult to get out of a chair. Also, you may drag your feet as you try to walk, making it difficult to move.
- Rigid muscles. Muscle stiffness may occur in any part of your body. The stiff muscles can limit your range of motion and cause you pain.
- Impaired posture and balance. Your posture may become stooped, or you may have balance problems as a result of Parkinson's disease.
- Loss of automatic movements. In Parkinson's disease, you may have a decreased ability to perform unconscious movements, including blinking, smiling or swinging your arms when you walk.
- Speech changes. You may have speech problems as a result of Parkinson's disease. You may speak softly, quickly, slur or hesitate before talking. Your speech may be more of a monotone rather than with the usual inflections.
- Writing changes. It may become hard to write, and your writing may appear small.
When to see a doctor
See your doctor if you have any of the symptoms associated with Parkinson's disease — not only to diagnose your condition but also to rule out other causes for your symptoms.
Coping with Parkinson's disease can be frustrating because of its common symptoms—trembling, stiffness (often called rigidity), slow movements, and the loss of balance and coordination. A good deal of that frustration comes from the loss of control that you once had over your body. It can also be emotionally overwhelming to know that there is currently no cure for the disease.
Nonetheless, people have a number of tools to better manage the symptoms of Parkinson's disease and live a healthy, enjoyable life.
Eating a healthy, balanced diet and drinking plenty of water are important for everybody, but especially when you have Parkinson's disease. That's because people with Parkinson's are more likely to get bone fractures from falling, have constipation, or have trouble maintaining their weight. Staying hydrated and getting the best possible nutrition through fruits, vegetables, whole grains and protein can help counteract these effects.
Stay on top of your medicine
Medicines for Parkinson's disease have come a long way. Often a combination of drugs is successful in replacing the naturally occurring brain chemical dopamine that is in short supply when you have Parkinson's. Certain drugs improve only certain symptoms, and you'll want to work with your doctor to find the best combination for you. Know that as the disease progresses, you may need to try other drugs and other combinations of drugs.
A treatment called deep brain stimulation, approved by the FDA, seems to provide additional relief for some people. It involves implanting a small electrical device in the brain that can ease Parkinson's symptoms.
Talk with your doctor about which of these options might be the right treatment approach for you.
Work with an occupational therapist
An occupational therapist is an important member of your treatment team. Working closely with this medical professional will help improve your quality of life. An occupational therapist will typically meet with you in your home, review your daily routine, and provide you with techniques and tools that will help you carry out your activities of daily living more effectively, even with the challenges presented by your illness.
Get daily living aids that can help you stay independent and safe
Among the tools that an occupational therapist might recommend are railings around your toilet and bathtub, a seat to use in the tub or shower, a pump soap dispenser instead of bar soap, an electric toothbrush and razor, a cordless phone that you can carry around with you, nonskid socks and Velcro-closure shoes, and an appropriate cane, walker, rollator or wheelchair to help you move around effectively.
Get a good night's sleep
Studies show that about 3 in 4 people with Parkinson's also have sleep problems, but it's crucial to your overall health to get a good night's sleep. Try strategies like creating a relaxing bedtime routine, going to bed at the same time every night, making your bedroom comfortable, dark and cool, and avoiding stimulants, such caffeine, alcohol, exercise and even watching TV, right before bedtime. If you are still having sleep problems, ask your doctor for a referral to a sleep specialist.
Take care of your mental health
About half of all people with Parkinson's deal with some sort of mood disturbance, such as depression or anxiety, at some point. These mental disorders will only further compound the problems of Parkinson's, so it's critical to get needed treatment, possibly medicine or counseling from a mental health professional.
Have an educated helper
Most people with Parkinson's disease need the help of one or more caregivers to get through the day. If you are a caregiver, one of the most important things you can do is read up on Parkinson's disease, so that you can understand what your loved one is going through. Also, be involved by attending doctor's appointments and therapy sessions. Often, these professional healthcare providers will have tips and advice for the caregiver as well as the person living with the disease.
In Parkinson's disease, certain nerve cells (neurons) in the brain gradually break down or die. Many of the symptoms are due to a loss of neurons that produce a chemical messenger in your brain called dopamine. When dopamine levels decrease, it causes abnormal brain activity, leading to signs of Parkinson's disease.
The cause of Parkinson's disease is unknown, but several factors appear to play a role, including:
- Your genes. Researchers have identified specific genetic mutations that can cause Parkinson's disease, but these are uncommon except in rare cases with many family members affected by Parkinson's disease.However, certain gene variations appear to increase the risk of Parkinson's disease but with a relatively small risk of Parkinson's disease for each of these genetic markers.
- Environmental triggers. Exposure to certain toxins or environmental factors may increase the risk of later Parkinson's disease, but the risk is relatively small.
Researchers have also noted that many changes occur in the brains of people with Parkinson's disease, although it's not clear why these changes occur. These changes include:
- The presence of Lewy bodies. Clumps of specific substances within brain cells are microscopic markers of Parkinson's disease. These are called Lewy bodies, and researchers believe these Lewy bodies hold an important clue to the cause of Parkinson's disease.
- Alpha-synuclein is found within Lewy bodies. Although many substances are found within Lewy bodies, scientists believe an important one is the natural and widespread protein called alpha-synuclein (A-synuclein). It's found in all Lewy bodies in a clumped form that cells can't break down. This is currently an important focus among Parkinson's disease researchers.
While there is no cure for this degenerative disease, there are treatments to help control the symptoms associated with the disease.
Parkinson’s disease is a clinical diagnosis, meaning there is no lab test or medical scan that confirms a diagnosis. Oftentimes those methods are used to rule out other diseases, but the actual diagnosis is based on a clinical exam.
Following a diagnosis of Parkinson’s disease, medications are used to help address the symptoms.
“Medications are not the only treatment strategy for Parkinson’s,” said Dr. Huan. “Exercise and physical therapy are also very important elements used in addressing the symptoms of the disease.”
If the effectiveness of the medications decreases as the disease progresses, surgery may be an option. Deep Brain Stimulation can help control the tremors associated with Parkinson’s. During the procedure, a neurosurgeon will implant electrical leads into the brain and connect them to a small device that is placed in the patient’s chest similar to a pacemaker. The device gives off electrical pulses that correct the misfirings of the brain that are causing the Parkinson’s symptoms.
Maria Polletta , The Republic | azcentral.com
The Phoenix-based program has expanded to 16 Spanish-speaking countries, focusing on communities where Parkinson's resources were previously "scarce or non-existent."
The Phoenix-based program has expanded to 16 Spanish-speaking countries, focusing on communities where Parkinson's resources were previously "scarce or non-existent."
The doctors didn't sugarcoat Onésimo López's Parkinson's diagnosis.
"They told us, 'You're about to experience something overwhelming, something terrible,' " said Carlota Dena, his wife.
What they didn't tell the couple was how to cope with the degenerative disease, marked by tremors, stiffness and balance problems. When López and Dena, both 54, asked for more details, "They just told us, 'It's in God's hands now,' " Dena said.
It took nearly a year — and traveling more than 1,100 miles — for the residents of Guamúchil, Mexico, to get a satisfying answer to that question. After Dena found the Muhammad Ali Parkinson Center online, the couple traveled 18 hours by bus to the Phoenix facility.
"I was scared to make the trip, especially with Onésimo just coming out of a depression," Dena said. "But when Claudia (Martínez, Hispanic-outreach coordinator for the center) came out to greet us, she gave us a really warm hug and told us, 'We're going to teach you about Parkinson's.' The next day, we were meeting with a team."
At that point, in July 2012, the Barrow Neurological Institute center's Hispanic-outreach program had been offering Spanish-language seminars, art and exercise classes, caregiver workshops, and support groups to Phoenix-area residents for five years.
Officials hadn't seriously considered connecting with Parkinson's patients beyond the country's borders. López and Dena's visit demonstrated an acute need for information in underserved parts of Spanish-speaking countries, Martínez said.
(Photo: Carlota Dena/Special for The Republic)
Since then, the program has used webcasting and other online tools to expand to 16 other countries, establishing a network of patients and caregivers in communities where Parkinson's resources were "scarce or non-existent." Those local groups decide how they want to participate, making them extensions, rather than replicas, of the Phoenix initiative.
"It's really amazing to see how much people have done in order to get access to the information," Martínez said. "Little by little, the Spanish-speaking Parkinson’s community is becoming more active and united."
Experts estimate more than 10,000 people with Parkinson's disease live in Arizona.
Pinpointing the number of Hispanic Arizonans with Parkinson's is more difficult.
Linguistic barriers or cultural preferences, such as an inclination toward homeopathic remedies, "may prevent members of the Hispanic community from seeking medical care or being properly diagnosed," said Holly Shill, movement-disorder neurologist and director of the Muhammad Ali Parkinson Center. "But … because we know the Hispanic community is at higher risk than other minorities for getting Parkinson’s disease, it is likely that the number is quite large."
From the start, the Hispanic-outreach program's mostly free offerings catered to the "cultural sensitivities" of Spanish-speaking patients, while maintaining the Alis' vision of providing services to everyone regardless of their ability to pay.
Over 10 years, the program has drawn Phoenix-area patients from Mexico, El Salvador, Guatemala, Ecuador and Peru.
"We didn't build the program to just be a translation of our existing (English-language) services," Martínez said. "We had the idea of reshaping them according to the culture, and also creating new services to meet needs that weren't being met for the Latino community."
For instance, the "Promotores" volunteers provide educational home visits in Spanish to families who are "isolated" because of transportation issues, fear or other obstacles. The volunteers teach tips on living with the disease using a story featuring a Hispanic family with a father who has Parkinson’s.
The program named its Spanish-language support groups "Comadres" and "Compadres" ("Friends") to address some Hispanic patients' reluctance to expose vulnerabilities to strangers. The names convey the "idea of sharing with friends or peers in a very not-intimidating setting," Martínez said.
The center also delivers Spanish-language seminars and conferences in a different format than those in English, encouraging relatives of all ages to accompany patients. Certified volunteers care for children, teenage volunteers lead activities for other teens and center officials deliver presentations for adults.
"In Latino families, many times you have three generations living in the same household, and the younger generations are pretty involved in care-taking," Martínez said. "This way, everybody feels welcome."
By Mia Rupani Staff writer | Friday, May 26, 2017
Riders use adaptive e-bikes on the 25-mile tour to Purgatory
Cyclist Joe Williams has been the face of Parkinson’s disease in Durango since his diagnosis in 2010.
Williams, 64, said he has three passions: golfing, fly-fishing and biking, and each activity helps to keep the neurological pathways from his brain to his body active.
He is a familiar face at the Iron Horse Bicycle Classic but insists that was not the plan.
“I said I would never ride in the Iron Horse because I hate climbing mountain passes,” Williams said with a laugh.
But his friends managed to talk him into it, and his five-time completion of the Iron Horse became the inspiration behind a new cycling event, said Gaige Sippy, Iron Horse Bicycle Classic director.
While most cyclists race to beat the train on the 48-mile journey from Durango to Silverton at the 46th annual Iron Horse Bicycle Classic, another group will demonstrate what it means to live well with Parkinson’s disease.
The Parkinson’s peloton will represent the Davis Phinney Foundation for Parkinson’s in the Quarter Horse, a 25-mile tour from Durango to Purgatory Resort. The ride will start at 8:15 a.m. Saturday in the Wells Fargo parking lot and features 2,300 vertical feet of climbing with a festival at the finish line.
The cyclists will use adaptive e-bikes on their journey, allowing them to engage an electric motor to make pedaling easier. The bike must be continuously pedaled to activate the motor.
“We like the idea of the pedal-assist bike, and we are big supporters because there are multiple applications for it,” Sippy said.
Sippy added that e-bikes allow people who aren’t physically able to ride a regular bike to participate in events they might not be able to otherwise.
The Iron Horse Bicycle Classic has partnered with the Davis Phinney Foundation since 2014, Sippy said. Williams’ “Go Joe Go” cycling team has raised more than $117,000 for the foundation and locally administered Parkinson’s programs.
“People living with Parkinson’s can have balance challenges and strength issues, but the demonstration of e-bikes shows others that there are alternative ways to participate in these events,” said Chris Brewer, director of development with the Davis Phinney Foundation.
The nonprofit was founded in 2004 by Davis Phinney, a retired professional bicycle racer with Parkinson’s disease and a career that spanned two decades. The foundation funds research into Parkinson’s and works to improve the quality of life for those with the disease.
Brewer said the foundation expects about 10 cyclists in the Quarter Horse, many of whom are traveling from the Boulder area to participate because “they realize how important it is to demonstrate this ability.”
Sippy said that a portion of the proceeds from the Quarter Horse will be donated to the Davis Phinney Foundation and the rest will stay in Durango, where it will go toward wellness programs managed by Mercy Regional Medical Center for those with Parkinson’s.
Williams couldn’t be more proud of the awareness raised and money donated. This year, he will ride in the Quarter Horse.
“I ride for those who can’t and that makes me emotional … That ride to Purgatory is mostly uphill and it gives you a sense of accomplishment. Those people are going to kick ass on those e-bikes,” Williams said.
MAY 25, 2017 BY SAMANTHA SPEISMAN IN SOCIAL CLIPS.
Write Things Down
Everyone forgets things now and then, but having brain fog often means forgetting important dates and occasions. Keep a to-do list and a calendar in a highly visible location, or use an online diary to keep track of what each day holds. There are many mobile apps that can also help with organization.
Exercise the Body
Exercise offers a chance to turn off from all the usual things that occupy the mind. It can also improve sleep, which can in turn improve cognitive skills.
Exercise the Mind
Take the time to do thought-challenging exercises like crossword, sudoku, and jigsaw puzzles, or learn a new language. In addition, maintaining a hobby will keep the mind focused on something positive.
Pick the Right Time of Day
Whether a morning lark or night owl, we all have certain times when we feel more alert. Choose a time each day when your concentration is at its highest to tackle difficult and complex tasks.
Eat a Brain-Healthy Diet
Eat lots of good fats known for brain health such as nuts, avocados, coconut oil, and omega-3-rich foods.
Get Plenty of Rest
Quality sleep and restorative naps (when appropriate) can dramatically improve cognitive health. Try to keep to a routine bedtime and waking time, even on the weekend, to promote a good sleep pattern.
Go Easy on Yourself
Don’t overdo it. Ask for help when needed and try to rest as much as possible to conserve energy. Participate in calming activities like taking a stroll through a peaceful spot, reading a book, or listening to music.
Organize Your Home and Workspace
Reorganize your living and working space so that everything you need regularly is easily accessible. This can help conserve energy and provide peace of mind.
If brain fog is worse first thing in the morning, laying out clothes the night before will be one less thing to have to stress over in the morning. Sort meds into a daily medication box so you know when you’re up to date and can easily make sure you haven’t forgotten to take them (or don’t take them more than once).
May 26, 2017