Lessons I Learned From Being A Caregiver To My Mom
One of the first things I immediately learned about Parkinsons disease is that not only does it turn a patients life upside down, but that previously effortless tasks can become physical hazards. With my mother at home most of the time, it was very important that I became educated on the potential dangers within the household. Without a doubt, stairs have posed one of the biggest threats to my mom since she has gotten Parkinsons. Anywhere we go, whether its up the stairs to her bedroom, to the second floor of a parking garage, or even just one step up through the front door, I found that its best for me to accompany her to help keep her steady and to catch her in case she loses her balance.
Another hazard that posed a great threat to my mom was the bed she slept in. With getting a good nights rest being very beneficial for those with Parkinsons my family had to learn how to adjust the bed my mother slept in to ensure that she would be safe through the night. Since it can be a common symptom for my mom to jerk and move a lot in her sleep due to vivid dreaming and restless leg syndrome, we decided to invest in a bed rail to ensure she did not accidentally roll out of bed. We also bought pillows to support her neck which was especially crucial after her cervical realignment surgery.
How Is Parkinson’s Disease Treated
If a doctor thinks a person has Parkinson’s disease, there’s reason for hope. Medicine can be used to eliminate or improve the symptoms, like the body tremors. And some experts think that a cure may be found soon.
For now, a medicine called levodopa is often given to people who have Parkinson’s disease. Called “L-dopa,” this medicine increases the amount of dopamine in the body and has been shown to improve a person’s ability to walk and move around. Other drugs also help decrease and manage the symptoms by affecting dopamine levels. In some cases, surgery may be needed to treat it. The person would get anesthesia, a special kind of medicine to prevent pain during the operation.
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Which Medicines Are Used To Treat Parkinson’s Disease
Guidelines released by the Scottish Intercollegiate Guidelines Network recommend starting with a dopamine agonist, levodopa with a dopa-decarboxylase inhibitor or a monoamine-oxidase inhibitor. Other medicines are also sometimes used, usually in addition to one of these three main types of medication.
New Childrens Book Raises Awareness For Parkinsons Disease
Sasha Au Yong, a recent graduate of Pickering College in Newmarket, Ontario, has just published her first book, Somethings Different About Grandpa.
Sasha wrote and illustrated this childrens storybook for her winning Global Leadership Program Capstone Action Project in support of Parkinson Canada. The book is suitable for all ages and is a great way for adults to teach young children about Parkinsons disease.
Sashas book is the culmination of a long process: she began work on this action project as part of the Global Leadership Program at the beginning of Grade 11 with an in-depth research paper on Parkinsons Disease. In Grade 12, Sasha and her classmates were tasked with taking action on their chosen issue. After considering the best way to spread awareness about Parkinsons Disease, Sasha decided to write and illustrate her own book. On Friday, April 30, Pickering College hosted a virtual pitch competition, the culminating activity for the schools Grade 12 students.
Sashas book is available as a free PDF on our website, and you can support her project by making a donation directly to her campaign.
The hard-copy version is also available for delivery in Canada and internationally. Please consider buying a copy to support the cause. The price is $12 plus shipping and all proceeds go to Parkinson Canada. Order your copy of Somethings Different About Grandpa
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Sidebar: Ninds Steps Up Pursuit Of Pd Biomarkers
In 2012, the NINDS dramatically accelerated efforts to identify biomarkers by establishing the Parkinsons Disease Biomarkers Program . This unprecedented program unites a range of stakeholders from basic and clinical researchers to healthcare professionals, the NINDS staff, information technology experts, and people living with PD and their families.
PDBP supports research and builds resources aimed at accelerating the discovery of biomarkers to ultimately slow the progression of PD. For example, the program has established a repository of biological specimens and a Data Management Resource system maintained by the NIH Center for Information Technology. The DMR allows researchers to access clinical, imaging, genetic, and biologic data, while a complementary PDBP-supported project develops statistical tools to analyze vast quantities of data so that patterns can be identified across these diverse sources of information.
Sidebar: Morris K Udall Centers Of Excellence For Parkinson’s Disease Research
The Morris K. Udall Parkinsons Disease Research Act of 1997 authorized the NIH to greatly accelerate and expand PD research efforts by launching the NINDS Udall Centers of Excellence, a network of research centers that provide a collaborative, interdisciplinary framework for PD research. Udall Center investigators, along with many other researchers funded by the NIH, have made substantial progress in understanding PD, including identifying disease-associated genes investigating the neurobiological mechanisms that contribute to PD, developing and improving PD research models, and discovering and testing potential therapeutic targets for developing novel treatment strategies.
The Udall Centers continue to conduct critical basic, translational, and clinical research on PD including: 1) identifying and characterizing candidate and disease-associated genes, 2) examining neurobiological mechanisms underlying the disease, and 3) developing and testing potential therapies. As part of the program, Udall Center investigators work with local communities of patients and caregivers to identify the challenges of living with PD and to translate scientific discoveries into patient care. The Centers also train the next generation of physicians and scientists who will advance our knowledge of and treatments for PD. See the full list of Udall Centers.
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How Are Pediatric Movement Disorders Treated
While parents should certainly talk to their children about their movements, they should not admonish them, Dr. Bamford says. Tics are made worse by criticism and negative comments, he says. Those heighten childrens anxieties, and the movements may worsen.
Some children with movement disorders such as tics may also have anxiety, attention deficit hyperactivity disorder and/or obsessive-compulsive behaviors. If a doctor determines that a child also has one of these disorders, the child may require additional treatments or medications. The need for treatment generally depends on how severe the problem is and should always balance potential risks and benefits.
Some children with movement disorders benefit from Cognitive Behavioral Treatment , a form of talk therapy that increases awareness of habitual thoughts and behaviors and how those are linked. CBT may use substitution methods, which may act to reprogram the brain. CBT is offered at Yale Medicine and, when possible, should be considered before using medications.
In some cases, when its determined that a child has a reduced capacity to make dopamine, dopamine replacement therapy can be useful. A course of treatment can lead to slowed movements, stiffness and sometimes tremor, Dr. Bamford says. Dopamine replacement can reduce these symptoms for children who have dopamine-dependent movement disorders including Segawa’s disease, tyrosine hydroxylase deficiency and sepiapterin reductase deficiency.
When To See A Doctor About Parkinsons
There isnt one specific test to diagnose Parkinsons disease. Doctors will usually evaluate your symptoms and perform several tests to determine if you have the condition. If you notice the following early warning signs, then you should see a doctor.
The early warning signs of Parkinsons disease include:
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Joan Didion Revered Author And Essayist Dies At 87
New York Joan Didion, the revered author and essayist whose precise social and personal commentary in such classics as “The White Album” and “The Year of Magical Thinking” made her a uniquely clear-eyed critic of turbulent times, has died. She was 87.
Didion’s publisher, Penguin Random House, announced the author’s death on Thursday. She died from complications from Parkinson’s disease, the company said.
“Didion was one of the country’s most trenchant writers and astute observers. Her best-selling works of fiction, commentary, and memoir have received numerous honors and are considered modern classics,” Penguin Random House said in a statement.
Along with Tom Wolfe, Nora Ephron and Gay Talese, Didion reigned in the pantheon of “New Journalists” who emerged in the 1960s and wedded literary style to nonfiction reporting. Tiny and frail even as a young woman, with large, sad eyes often hidden behind sun glasses and a soft, deliberate style of speaking, she was a novelist, playwright and essayist who once observed that “I am so physically small, so temperamentally unobtrusive, and so neurotically inarticulate that people tend to forget that my presence runs counter to their best interests.”
Or, as she more famously put it: “Writers are always selling somebody out.”
“Whatever troubles we had were not derived from being writers,” she told the AP. “What was good for one was good for the other.”
Who Is At Risk For Developing Pediatric Movement Disorders
It’s difficult to know exactly how many children have movement disorders. The true incidence is probably even higher since these can occur over a few days or weeks, and parents might not notice them, Dr. Bamford says.
Children with autism often display unusual movements perhaps as a means of communication because their language function is often impaired. But autism itself does not cause these movements.
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Parkinsons And Your Children/teenagers
Parkinsons disease is a family affair: everyone in your family is affected. As a parent of a young child or teen, it is important to consider how PD might affect your children and what can be done to continue to live a full family life with PD. A parents illness can present challenges for a family, but it can also provide opportunities for children to grow in ways they may never have experienced without the health issue. The good news is that children often adjust well to a loved ones diagnosis of PD. With support, they not only adjust but also thrive and can become more self-sufficient, confident and independent.
As symptoms of PD vary for each person, so do the emotions of each child. Common emotions include:
Common Questions Children Have
- How did you get Parkinsons?
- Why do you have Parkinsons?
- Will I get Parkinsons too?
- Will it go away?
- Can the doctors help you?
- Does it hurt?
- Are you going to die?
- Is it a secret?
- Will you still be able to take me to football/music/drama/ballet/etc?
There may come a time when you think your child needs extra help or they may tell you theyre finding things difficult. Although it may be useful for them to speak to another family member, sometimes it can be better to talk to someone not involved in their family life. This may be a friend, a teacher or their GP, for example. If they still seem troubled or depressed, you could arrange for some counselling for the child alone or with the whole family.
If you would like more help for your child, the first step is to talk to your GP. They should be able to explain the different kinds of help available and refer you to an appropriate service. There are also several organisations for children and young people that offer confidential phone support see below. Some of these organisations, for example YoungMinds, also have a helpline that parents can ring for advice.
Remember, every family is unique and youll find your own way of living with Parkinsons. If you have any concerns about talking to your children about Parkinsons, call our helpline or speak to your Parkinsons local adviser.
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Living With Parkinson’s Disease
As Parkinson’s develops, a person who has it may slow down and won’t be able to move or talk quickly. Sometimes, speech therapy and occupational therapy are needed. This may sound silly, but someone who has Parkinson’s disease may need to learn how to fall down safely.
If getting dressed is hard for a person with Parkinson’s, clothing with Velcro and elastic can be easier to use than buttons and zippers. The person also might need to have railings installed around the house to prevent falls.
If you know someone who has Parkinson’s disease, you can help by being a good friend.
What Are The Treatments For Parkinson’s Disease
There is no cure for PD, and no treatment prevents the disease from progressing. However, treatments can usually ease symptoms.
- At first, you may not need any treatment when the symptoms are mild. A specialist may simply see you every now and then to monitor how the disease is progressing.
- A medicine that eases symptoms is usually started when symptoms become troublesome.
- Therapies such as physiotherapy, occupational therapy and speech therapy may also be useful as the disease progresses.
- Surgery may be an option for severe cases.
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Environmental Factors And Exposures
Exposure to pesticides and a history of head injury have each been linked with PD, but the risks are modest. Never drinking caffeinated beverages is also associated with small increases in risk of developing PD.
Low concentrations of urate in the blood is associated with an increased risk of PD.
Different medical drugs have been implicated in cases of parkinsonism. Drug-induced parkinsonism is normally reversible by stopping the offending agent. Drugs include:
Five Boys And Three Girls Had Tremors
Canadian researchers have used the power of genomics to identify the cause of a rare Parkinson’s-like disease in children of one extended family and come up with a treatment to help reverse its effects.
It’s believed to be the first time a new disease has been discovered, its cause figured out and a treatment successfully determined in such a short time, in this case about two years.
The eight children five boys and three girls born to four sets of parents in a large Saudi Arabian family were born with symptoms similar to those experienced by adults with Parkinson’s disease, said principal researcher Dr. Berge Minassian, a neurologist at Toronto’s Hospital for Sick Children.
“They’re very interesting, they’re like little babies with Parkinson’s disease,” said Minassian, explaining that the children exhibited typical symptoms of the neurological disorder, including tremors, problems executing movements, and the flat facial expression known as a “masked face.”
“Those kids are like that. They cry, but you don’t see them cry,” he said.
Dr. Reem Alkhater, a pediatric neurology resident at the hospital, has been travelling back and forth between Toronto and Saudi Arabia as part of the research team’s investigations into the familial disorder.
Using genomic sequencing, the Toronto scientists pinpointed a common mutated gene among the children, known as SLC18A2.
“It made them worse, so we quickly stopped,” he said.
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Parkinson Disease In Children
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What Makes Yale Medicines Approach To Pediatric Movement Disorders Unique
Patients who come to Yale Medicine benefit from the collaboration between physicians and researchers who are specialists in highly relevant and related fields. We have a comprehensive movement disorder group that consists of specialists like myself and adult movement disorder specialists, Dr. Bamford says. We meet on a weekly basis to discuss childrens cases and together determine the root cause of their movements and behaviors.
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Does Parkinson’s Disease Cause Dementia
The cells in the brain affected in PD are not in the ‘thinking’ parts of the brain and dementia is not a typical early feature of PD. However, if you have PD you have an increased risk of developing dementia. About half of people with PD develop dementia at some stage. If dementia occurs, it tends to develop in older people with PD . Early dementia in younger people with PD virtually never develops. It is thought that PD alone does not cause dementia however, other age-related factors in addition to PD may increase the risk of dementia developing.
How Is Parkinson’s Disease Diagnosed
Someone with the symptoms of Parkinson’s disease may be sent to see a neurologist, a doctor who specializes in the brain, nerves, and muscles. The neurologist may do some tests, including a brain scan and blood tests. These tests will not make the diagnosis of Parkinson’s disease, but the doctor will want to make sure that there is no other problem causing the symptoms. To diagnose Parkinson’s disease, the doctor relies on a person’s medical history, symptoms, and a physical exam.
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What Are The Signs And Symptoms Of Wpw
Your child may have no signs or symptoms, or he may have the following:
- Fast, irregular, or pounding heartbeats
- Chest pain or trouble breathing
- Heavy sweating
- Dizziness or fainting, or not being able to do his activities
- Pale skin, behavior changes, or a fever
- Trouble staying alert, irritability, or a lack of appetite