Episodes
Sunday Dec 17, 2023
Sunday Dec 17, 2023
Living with *Parkinson's& PSP disease can present numerous challenges, both physically and emotionally. This chronic neurological disorder affects the central nervous system, often causing tremors, stiffness, and difficulty with movement. However, with proper care, support, and a positive mindset, individuals can still lead fulfilling lives.
Thursday Nov 30, 2023
Do I Have Parkinson’s or Progressive Supranuclear Palsy (PSP)?
Thursday Nov 30, 2023
Thursday Nov 30, 2023
There are medical conditions that exist that are called Parkinsonian-like conditions or Parkinsonian-like syndromes. These conditions mimic Parkinson's disease (PD), but they are considered their own separate entities.
Saturday Nov 25, 2023
The role employers play with Caregivers for Parkinsons Patients
Saturday Nov 25, 2023
Saturday Nov 25, 2023
Since caregiving is so important to communities, there are crucial supports employers can provide. Support for caregiving has become a factor in attracting and retaining employees.
Monday Nov 20, 2023
Parkinson’s and *Thanksgiving
Monday Nov 20, 2023
Monday Nov 20, 2023
How is it Thanksgiving week already? Whether you’ve been counting the days until your holiday celebrations, or you’re taken by surprise when you realize that Thanksgiving is just days away, the holiday season can bring up a lot of varied emotions. Some feel fun and festive all season long while others feel stressed and sad – and many of us fall somewhere in between.
We invite you to look at the holidays as a unique opportunity to reflect on and appreciate the good and special things in our lives, despite the challenges we may face. Life with Parkinson’s disease (PD) can be tough, and many are dealing with other issues and concerns as well. But perhaps by leaning into the spirit of thankfulness we can find moments of joy, and by supporting one another as we navigate the often tricky balance between holiday cheer and managing our health and emotions we can celebrate a season filled with gratitude, wellness, and the shared strength that can come from facing life's challenges together.
To help set yourself up for happy holidays, here are some helpful tips to keep in mind:
Keep moving. Exercise and movement can help both your body and mind feel good. APDA offers many online classes you can join from wherever you are -- or get outside for a walk if you can.
Sing yourself happy! Join us on November 22 for Sing Loud for PD – a free online singing class that can help strengthen your voice and also lift your spirits. No singing talent required.
Take time for yourself. It’s not always easy to carve out time for yourself at this time of year, but it is important to take care of yourself – whether it’s to have a cup of coffee with a friend, or just have some quiet alone if things are feeling too frenzied.
Accept help. If friends or family offer help, say ‘yes’ and give them something specific to do (i.e., help with holiday shopping, bring a dish to Thanksgiving, run an errand, or maybe just lend an ear if you’re having a hard time.)
Find support. Some support groups take a break around the holidays, but that doesn’t mean you have to go it alone. You can join an online community like Smart Patients – a discussion forum for people with PD and their loved ones where you can share help, advice, and information.
And as we enter this holiday season, please know how truly thankful we are for all of you who support our work* and help keep our programs and services going all year round. We couldn’t do it without you.
Sunday Nov 19, 2023
Sunday Nov 19, 2023
Playing Golf Might Be Even Better Than Tai Chi at Helping With Balance
Does tai chi have long-term benefits?
Many of the symptoms of Parkinson’s occur as a result of the progressive loss of dopamine-producing nerve cells in a brain region that controls movement and coordination. Dopamine is a major chemical messenger involved in nerve cell communication.
Medication and surgery are used to help people with Parkinson’s manage their symptoms. But getting regular exercise can help to maintain mobility, improve balance and coordination, and ease nonmotor symptoms.
Tai chi involves sequences of very slow, controlled movements that are combined with breathing control.
The researchers had previously shown that a year of regular tai chi improved waking skills and balance in early-stage Parkinson’s patients.
“Previously published research suggests that tai chi eases Parkinson’s symptoms in the short term, but whether this improvement can be sustained over the long term isn’t known, ” according to a press release from BMJ, the journal’s publisher.
In the new study (NCT05447975), the researchers examined the long-term benefits of tai chi with Parkinson’s. They compared 143 adults (78 men, 65 women; mean age 66.7) who practiced tai chi twice a week for an hour with 187 patients who served as controls and who didn’t exercise but were matched for age, sex, disease duration, and disability.
All were followed over an average of 4.3 years. Motor and nonmotor experiences of daily living and complications of Parkinson’s were evaluated using the Unified Parkinson’s Disease Rating Scale (UPDRS) at the study’s start, or baseline, and in 2019, 2020, and 2021.
Improved UPDRS scores, reduced medicine needs
Tai chi practice significantly slowed down the yearly progression of Parkinson’s — the total UPDRS scores increased (got worse) by about 3 points among tai chi participants versus nearly 5 points among controls in each year from 2019 to 2021.
Tai chi practice was also associated with significantly smaller score increases in the UPDRS part III, which assesses motor symptoms, indicating slower progression. Tai chi patients also performed better on the Timed Up and Go test, which measure how fast one can walk, and on the Berg Balance Scale, which assesses balance.
Practicing tai chi also slowed down worsening of cognitive function, autonomic symptoms, sleep, and quality of life. The autonomic nervous system controls involuntary bodily functions such as heart rate, blood pressure, breathing, and gastrointestinal function.
It was significantly less common for tai chi participants to have dyskinesia (1.4% vs. 7.5%), off episodes, which occur when the effect of treatment wears off (1.4% vs. 6.4%), dystonia or spasms (0% vs. 1.6%), hallucinations (0% vs. 2.1%), mild cognitive impairment (2.8% vs. 9.6%), and restless legs syndrome (7% vs. 15.5%).
Dizziness, back pain, falls, and bone fractures caused by falls, however, were about as common among tai chi participants as controls.
The proportion of patients who needed to increase their medication was significantly lower among those who engaged in tai chi both in 2019 (70.6% vs. 83.4%) and 2020 (87.4% vs. 96.3%).
In 2021, while all the patients in both groups needed to increase their medication, the average increase in levodopa equivalent daily dose — the sum of all Parkinson’s medications taken — was significantly lower among tai chi participants (204 vs. 436.8 units per day).
“In our study, delayed progression in motor function … and continuous improvement in quality of life … sleep … and cognition … were found in the tai chi group, ” the researchers wrote, adding “the prevalence of complications (dyskinesia, wearing-off phenomenon, dystonia) and several nonmotor symptoms (hallucinations, [mild cognitive impairment] and restless legs syndrome) were lower in the tai chi group. ”
The researchers said theirs was the first study they knew of that showed tai chi can “maintain its long-term beneficial effect on [Parkinson’s disease], ” but noted it “can’t establish cause and effect, ” because it was an observational study. They also acknowledged that the “number of study participants was relatively small and they weren’t randomly assigned to their group. ”
Thursday Nov 16, 2023
Eating, Swallowing and Saliva Management with Parkinsons
Thursday Nov 16, 2023
Thursday Nov 16, 2023
Eating, Swallowing and Saliva ManagementSome people with Parkinson’s may find they have difficulties with eating, swallowing and saliva control at some stage of their journey with Parkinson’s.
Parkinson’s can cause the muscles in the jaw and face to become stiff which affects the control of chewing and swallowing.
Another symptom of Parkinson’s can be producing excessive saliva. The stiffer facial muscles can change the nature of saliva, which may become thicker and stickier.
Coughing when eating or drinkingGurgly sounding voiceDifficulty swallowing certain foods, fluids or medicationsMeals taking longer to finish than usualUnexplained weight lossRepeated chest infectionsBeverages needed to wash down foodDroolingInability to clear food from the mouthChoking on foods, liquids or salivaLoss of appetiteA person with dysphagia is at risk of weight loss, malnutrition, and dehydration. Dysphagia can also result in food or drink 'going down the wrong way' which can lead to chest infections and sometimes pneumonia. Dysphagia can impact on quality of life as the person affected may not enjoy eating, feel embarrassed and become anxious about eating. Swallowing difficulties may also make it more difficult to take your medication.
Useful tipsStrategies to overcome swallowing problems include:
Ask your GP for a referral to see a Speech Pathologist who will assist with exercises to strengthen swallow and reduce difficulties created by saliva. They may recommend some changes to your diet or consistency of food and fluid, to make it safer to swallowSit up straight when eating and drinkingTake small mouthfuls and sipsHave one sip of drink at a timeReduce distractions and avoid talking whilst chewing and swallowingBe alert to fever and coughs and seek help immediately when they occurEat and drink during your medication 'on' periodSaliva ManagementSaliva is necessary for digestion. It lubricates the throat to make swallowing easier and contains chemicals that break down food. Saliva also assists with oral hygiene as saliva helps break down plaque. Some people with Parkinson’s develop problems controlling their saliva, which can lead to drooling or dribbling. The medical term for this is sialorrhea. Research shows that this can affect more than half of people with Parkinson’s.
Sunday Jun 25, 2023
Hospitals Specializing in Parkinson’s Disease
Sunday Jun 25, 2023
Sunday Jun 25, 2023
There are many great hospitals for Parkinson's disease around the world, but some of the best include:Mayo Clinic in Rochester, Minnesota, Phoenix/Scottsdale, Arizona, and Jacksonville, Florida. Cleveland Clinic in Cleveland, Ohio. University of California, San Francisco (UCSF) in San Francisco, California. Mount Sinai in New York City, New York. Northwestern Memorial Hospital in Chicago, Illinois. Barrow Neurological Institute in Phoenix, Arizona. University of Pennsylvania in Philadelphia, Pennsylvania. Johns Hopkins Hospital in Baltimore, Maryland. These hospitals all have world-renowned movement disorder specialists who are experts in the diagnosis and treatment of Parkinson's disease. They also offer a wide range of services, including clinical trials, deep brain stimulation surgery, and rehabilitation. In addition to these top hospitals, there are many other great hospitals for Parkinson's disease around the world. When choosing a hospital, it is important to consider factors such as the expertise of the doctors, the availability of services, and the location. You should also talk to your doctor about their recommendations. Here are some additional factors to consider when choosing a hospital for Parkinson's disease:Location: If you live far from a top hospital, you may want to consider a hospital that is closer to home. This will make it easier for you to travel to your appointments and for your family to visit you. Cost: The cost of care can vary from hospital to hospital. You should factor in the cost of treatment when making your decision. Support services: Some hospitals offer a variety of support services for people with Parkinson's disease, such as counseling, support groups, and education programs. These services can be helpful in managing your condition and improving your quality of life. No matter which hospital you choose, it is important to make sure that you feel comfortable with the doctors and staff. You should also feel confident that the hospital has the resources you need to manage your condition. Cleveland Clinic in Cleveland, Ohio. University of California, San Francisco (UCSF) in San Francisco, California. Mount Sinai in New York City, New York. Northwestern Memorial Hospital in Chicago, Illinois. Barrow Neurological Institute in Phoenix, Arizona. University of Pennsylvania in Philadelphia, Pennsylvania. Johns Hopkins Hospital in Baltimore, Maryland. These hospitals all have world-renowned movement disorder specialists who are experts in the diagnosis and treatment of Parkinson's disease. They also offer a wide range of services, including clinical trials, deep brain stimulation surgery, and rehabilitation. In addition to these top hospitals, there are many other great hospitals for Parkinson's disease around the world. When choosing a hospital, it is important to consider factors such as the expertise of the doctors, the availability of services, and the location. You should also talk to your doctor about their recommendations. Here are some additional factors to consider when choosing a hospital for Parkinson's disease:Location: If you live far from a top hospital, you may want to consider a hospital that is closer to home. This will make it easier for you to travel to your appointments and for your family to visit you. Cost: The cost of care can vary from hospital to hospital. You should factor in the cost of treatment when making your decision. Support services: Some hospitals offer a variety of support services for people with Parkinson's disease, such as counseling, support groups, and education programs. These services can be helpful in managing your condition and improving your quality of life. No matter which hospital you choose, it is important to make sure that you feel comfortable with the doctors and staff. You should also feel confident that the hospital has the resources you need to manage your condition.
Sunday Jun 25, 2023
Sunday Jun 25, 2023
The average life expectancy for people with Parkinson's disease is 16-18 years after diagnosis. However, there are many factors that can affect life expectancy.