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Kerri

What is Parkinson’s Disease? Parkinson Awareness Week

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Most people have heard of Parkinson’s Disease (or Parkinson Disease), but often, we may know one or two facts about a particular disease or condition, and not a lot else—I know that’s where I stand right now about my Parkinson Disease knowledge!
April 10 to 16 in the UK is Parkinson Awareness Week. April 11 is World Parkinson’s Day, and the 200th anniversary of when Parkinson’s Disease was identified as a medical condition by doctors. [1] In the UK, 127,000 people, or 1 in 500, have Parkinson’s Disease, so while you may not know anybody who has it personally, chances are there will be someone in a friend or family member’s life who will be diagnosed with Parkinson’s. [2]
 
What is Parkinson’s?
Parkinson’s Disease is different for each person. It is a neurological disorder, which most often causes movement problems, specifically and most notably causing tremor (shakiness of muscles, most noticeable in arms/hands and legs), rigid (stiff) muscles, and slow movement. [2] Often people with Parkinson’s experience fatigue, body pain, and depression, among other issues. [2]
 
How is Parkinson’s Treated?
Parkinson’s patients often take medicines, physio and occupational therapies, and sometimes have surgery to help with symptoms. Often, people with Parkinson’s will require carer support as their disease progresses. [2]
 
Should People with Parkinson’s Disease wear medical ID jewelry?
Absolutely! Depending on how severe tremors are, they may be mistaken by those with little knowledge for seizures. Speech can be impacted, which means it may be difficult for someone with Parkinson’s to communicate their needs in an emergency. [3] As well, people with Parkinson’s may have memory problems, are at increased risk of dementia, hallucinations, anxiety and depression. [3] These are all reasons that make medical ID jewelry important. A necklace may be a better choice for a Parkinson patient, as skin irritation may develop from a bracelet rubbing against the wrist during tremors—if a bracelet is preferred, a sport band may be a good choice.
 
Learn more.
Parkinson’s UK provides a wealth of easily understood information about Parkinson disease. Consider learning more this week to recognize Parkinson Awareness Week. 
Kerri

Autism Awareness / Autism Acceptance Day

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April 2nd is Autism Awareness Day, also known as Autism Acceptance Day to autism self-advocates. Autism has in the past been seen as a mysterious developmental condition, but as time goes on, we are learning more and more about what a diagnosis on what is now known as the “autism specWorld Autism Awareness Day trum” really means.
Autism can range wildly form person to person. Some people with autism do not speak, and use other ways to communicate with others, such as pictures, communication devices, sign language, or gestures. Some people with autism may take longer to gain language, but may speak later in life, or they may not. A person’s verbosity is not at all an indicator of their intelligence. Most people with autism are very intelligent, however, not all people with autism are “savants”—those who know an immense amount about a particular subject or have an innate ability to memorize certain things (like having a “calendar in your head”). People with autism may have very specific interests, which may change over the course of their lives, or may remain the same. Most people with autism benefit from and enjoy routine, and these interests are simply a part of their routine. People of all ages with autism may have trouble with sleep, certain environments that are loud, bright or overstimulating, and have very specific food preferences. Anxiety and attention deficit disorder, as well as depression, are common co-existing conditions with autism.
People with autism may take part in a variety of therapies to help them to interact with the world in ways that work for them individually. No two people with autism are alike—some are verbal, some are non-verbal, and like all of us, are all interested in different things and have unique strengths. Many but not all people with autism are sensitive to physical contact, it simply depends on the person. Some people with autism will be able to live completely independently, while others will need assistance with certain aspects of life. “High functioning autism” is a term used to describe those with autism who can, with some accommodation and support, or education, adapt to be independent and self-supporting. Many people with autism are self-advocates, and assist the world in understanding autism how they see it as someone living with the diagnosis (which they often see as a personality trait and not a disorder!). Many adults with autism choose to embrace the title of Autistic rather than “person with autism”—this is a personal choice that should be respected. Person-first language (person with autism) is more “socially correct”, however, I personally have chosen to use person first language until an individual has told me that they prefer being referred to as autistic instead. Go with what the person prefers, and don’t be afraid to ask!
For people with autism, wearing a medical ID bracelet can be important, in case of a stressful emergency situation that makes it difficult to communicate. Adults or children with non-verbal autism should wear a medical ID bracelet stating autism – non-verbal and an emergency contact number, as well as any other medical needs.
I have had the opportunity to coach, work with, and be friends with several people of different ages with autism. There is absolutely no “box” to put people with autism in—just like anyone, people with autism are unique, and it is important to get to know them, while understanding that their autism may be the reason they approach some things differently than others!
Kerri

When winter cold can be a literal pain, not just an inconvenience: Raynaud Awareness Month

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Raynaud Syndrome, also known as Raynaud Phenomenon when it is secondary to another diagnosis, makes a person’s limbs/extremities overly sensitive to cold temperatures, because of hypersensitivity of the tiny blood vessels in the fingers (and toes, as well as a person’s ears, nose and even nipples). Raynaud’s most often causes the affected body part to change colours—either decreasing the colour (turning white) to changing to blue or red (and not just a “pinkish”-red!) [1], Attacks of Raynaud syndrome can be uncomfortable and even painful, and can make using the hands very difficult for fine-motor tasks.
The cause of Raynaud Syndrome is not known, but sometimes it is caused by another medical condition (known as Secondary Raynaud’s)—this is often caused by an autoimmune disease, scleroderma and lupus being the most common, [1] but also including type 1 diabetes or autoimmune arthritis. Secondary Raynaud’s can cause more severe complications, like ulcers of the affected body part, and should be followed-up on regularly with your doctor. Primary Raynaud’s is usually mild and without other complications. [1] If you have another condition that has brought on Secondary Raynaud’s, it is likely important to wear medical ID jewelry for your autoimmune condition.
People with Raynaud’s Syndrome should protect their hands from injury and cold temperature, keep warm when outdoors (especially if working outdoors), and exercise/massage fingers on work breaks [2]. Many specific precautions can be used with vibrating tools as these can trigger Raynaud’s symptoms, although if undiagnosed, medical attention should be sought before continuing work with these devices. [2] While cold is the primary trigger of Raynaud symptoms, strong emotions like stress and anxiety are also known to cause symptoms as adrenaline produced in response to these emotions may limit blood flow. [2]
Remember, most of the time, Raynaud’s is not dangerous even if uncomfortable. However, if you have an autoimmune condition that has lead to secondary Raynaud’s, wearing a medical ID to identify this condition may be important in an emergency.
Kerri

Festival of Winter Walks: Safe steps

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Walking is one of the easiest and most accessible physical activities. Less stressful on your joints than running, unlike cycling it doesn’t require any equipment (maybe a pair of decent runners!) and you can start at any age. December 17 to January 8th is known as the Festival of Winter Walks, to get more people in Britain exploring the outdoors—even in the winter. Staying safe when outdoors—especially when things get potentially slippery—is of course the most important consideration when maximizing on your winter walks!
  • Take anything with you that might be needed for a medical condition—inhalers or medications like nitroglycerine for heart disease, a blood glucose monitor and glucose for hypoglycemia—whatever you typically need to prepare for activity outside of the house.
  • Dress warmly and in layers—including gloves or mittens and a hat. Non-cotton socks will often keep your feet driest.
  • Wear shoes that “grip”—removable spikes may be added to running shoes, just ensure that your feet are warm enough!
  • Wear a medical ID bracelet or necklace—just in case!
  • Tell a friend or family member where you are going, your planned route, and when you will be back—or better yet, walk with a buddy! It’s more fun. Always explore new areas with a buddy, or preferably a group of people.
  • Carry a cell phone with you in case of emergency (or, in case you fall in a slushy puddle and would rather get a ride home! ;) .)
  • Take a small amount of money with you in case you need it, for a taxi or bus fare—or, even in case you run into a friend and decide to grab coffee!
There are lots of great places to explore. Keep these tips in mind to ensure your travels—no matter how near—are safe ones. Winter may not feel like the best time to explore your neighbourhood, but between holiday lights, snowscapes and more, it can seem like a whole different world than the summertime!
Kerri

International Day of Persons with Disabilities

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While you may not realize it, you likely encounter people with disabilities often in your daily life—and not know it. Not all disabilities are visible. December 2nd is the Untied Nations International Day of Persons with Disabilities. What kind of disabilities are out there?
  • Physical/Mobility Conditions that affect a person’s ability to move. Often these conditions can be visible if the person uses a wheelchair, mobility scooter, cane or crutches, or has a prosthetic limb. However, some physical disabilities are not visible and may include fatigue, limited range of motion, and more.
  • Vision Wearing glasses is not the same as having a visual impairment. People with visual impairment have low vision or vision loss that is not corrected by wearing glasses. This can range form being visually impaired to being totally blind—most people who are visually impaired, are not totally blind. You can likely spot a person who is totally blind as they may be using a long white cane, or a guide dog, but may encounter someone who is visually impaired and not even know it—they may use a cane sometimes or not at all.
  • Hearing Many people who are Deaf (a person who cannot hear—the capital D signifies the person’s desire to be part of the Deaf community, as opposed to simply being deaf) do not consider being Deaf a disability, and rather it is to them much like simply speaking another language (sign) and being bilingual (English and British or American Sign Language). However, some people who are deaf or hard-of-hearing (the more commonly accepted term for “hearing impairment”) do consider their hearing loss a disability.
  • Intellectual People with ID are extremely variable in their abilities, independence, level of required care, communication abilities (verbal vs. non-verbal) and understanding—and more. [1] It is important to realize as well that people with ID are often very smart, they just may convey this differently than we are used to!
    In the UK, these are often referred to as “learning disabilities”, although more groups are moving toward the use of the term Intellectual Disability (ID) to clarify the difference between diagnoses such as autism, Down Syndrome, Fragile X Syndrome, and more, including not-specified causes of ID.
  • Learning Learning Disabilities or Difficulties (different from ID) often include Specific Learning Disabilities, including dyslexia (reading problems), dyscalculia (maths problems), dysgraphia (motor-coordination and planning problems affecting learning and writing), and more. Attention Deficit Hyperactivity Disorder may also to some be classified as a Learning Disability, as well as those that are Not Otherwise Specified. Learning Disabilities may require school or work accommodations, and different self-accomodations or home strategies to compensate for the LD—most people with a LD have average or above average intelligence.
  • Psychiatric Symptoms of psychiatric disorders can impact people’s lives significantly. When there is a profound impact on a person’s ability to learn, work, communicate or perform self-care, a psychiatric condition—such as anxiety disorders, major depression, bipolar disorders and schizophrenia. Accommodations may be required in work or school settings—mental health conditions may be disabling themselves, or side effects of medications may cause or contribute to disability. [2]
  • Neurological Some neurological disorders, such as cerebral palsy, Parkinson disease, or stroke, can cause disabilities that impact both the brain and body. These disabilities may not only vary greatly among people, but they can also vary from time to time for the same person—such as with energy levels, environment, ad so on. [3]
Disability is far more than meets the eye—this International Day of Persons with Disabilities, be aware and celebrate the diversity of people in our communities. For varying reasons, it may be important for people with disabilities to wear medical ID jewelry—for example, due to a co-occurring seizure disorder, communication need, or medications being taken.
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