Hypersomnia Foundation

Dr. Dale Edgar Joins the Hypersomnia Foundation SAB

The Hypersomnia Foundation invites you to join us in welcoming Dale M. Edgar, PhD, as the newest member of our Scientific Advisory Board. Dr. Edgar joins Drs. David Rye, Nicholas Frank, and James Krueger in crafting our research agenda, raising awareness about hypersomnia in the scientific community, and developing our mechanism for reviewing, scoring, and funding the best research on the understanding and treatment of hypersomnia from the brightest young scientists.
Dr. Dale Edgar is an experienced scientist, drug hunter, and entrepreneur, who recently retired as an executive leader at Eli Lilly and Company. He is also a renowned expert in sleep disorders research and development. Dr. Edgar recently cofounded Novion Pharmaceuticals, a start-up neuroscience biotechnology company focused on the discovery and development of novel treatments for sleep disorders, where he is senior vice president of research.

Dr. Edgar previously served as Chief Scientific Leader of Discovery Sleep Research at Eli Lilly and Company – a cross-functional preclinical and clinical R&D function focusing on innovative medicines for sleep disorders and sleep-related comorbidities in psychiatry, pain, neurodegenerative disease, and metabolic disease. Within a year of joining Lilly he was conferred the prestigious title of Lilly Distinguished Research Fellow — the highest honor bestowed upon a scientist at the company. Dr. Edgar’s global multidisciplinary teams—located in the United Kingdom, Singapore, and the United States—delivered numerous compounds from inception to human clinical trials. Later in his career, Dr. Edgar was promoted to Global Head of Science and Technology Partnerships, responsible for the strategy and oversight of consortia, public private partnerships, and academic affairs across the Lilly research enterprise. He served on numerous governance committees, led Lilly’s Post-Doctoral Scientist Training Program, founded the prestigious Lilly Innovation Fellowship Award program, and served as a senior science and technology advisor to the President of Lilly Research Laboratories.

Prior to joining Lilly, Dr. Edgar was Cofounder, Senior Vice President and the Chief Science & Technology Officer of Hypnion Inc—a spin-out of the science and technologies he developed at Stanford University. Dr. Edgar led Hypnion’s preclinical and clinical research teams responsible for the identification and validation of novel pharmacological treatments for insomnia and disorders of excessive sleepiness. Hypnion was acquired by Eli Lilly & Company in April 2007. Prior to founding Hypnion in 2000, Dr. Edgar was Associate Professor of Psychiatry & Behavioral Sciences and Director of the Sleep and Circadian Neurobiology Laboratory in the Sleep Disorders Research Center, Stanford University School of Medicine. During his 15 years at Stanford University, Dr. Edgar achieved international recognition as a leader in sleep and circadian neurobiology and sleep-wake pharmacology. He is well known for his mentorship and training of young scientists and his seminal contributions in sleep and circadian physiology, including the identification of wakefulness-promoting mechanisms controlled by the suprachiasmatic nucleus and opponent processes that modulate physiological sleepiness. Dr. Edgar is also the principal inventor of SCORE™, a family of computerized real-time sleep and physiological assessment technologies and integrated pharmacological database that have greatly accelerated the process of preclinical drug discovery and lead optimization. These technologies are being used to help transform drug discovery at Lilly.

Dr. Edgar is a member of the Harvard Medical School Division of Sleep Medicine Executive Council, the ASPIRE Advisory Committee at Vanderbilt University School of Medicine, and the NeuroNET Advisory Committee at UT Knoxville. He has previously served as an officer of the Sleep Research Society and on Editorial Boards of the journal Sleep and the Journal of Biological Rhythms. He has been the principal investigator of numerous NIH, DOD, and industry partnership grants focused on sleep and circadian neurobiology, pharmacology and phenotyping. He received his master’s degree in biology from San Jose State University while a NASA Graduate Research Fellow at the NASA-Ames Research Center and then received his doctorate in biology/physiology from the University of California. He received postdoctoral training at Stanford University under Prof. William C. Dement. Dr. Edgar has published extensively, has numerous patents in sleep-wake drug discovery, and continues to educate on sleep health awareness and its importance to health care, the economy, and national security.


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Investing in the Future of People with Idiopathic Hypersomnia

An insatiable need to sleep that is not eased by a full night’s slumber is one of the debilitating effects of a rare, chronic neurological disorder called idiopathic hypersomnia (IH). In a society where feeling tired is the norm, IH is often unrecognized or misdiagnosed by medical professionals, as well as misunderstood by family members, employers, and society in general.

IH often strikes people in the prime of their lives. No US Food and Drug Administration-approved treatments exist, although wake-promoting medications are sometimes prescribed “off-label.” Unfortunately, these medications don’t work well for everyone, and most stop working over time or have bothersome side effects. Even when medications do help people with hypersomnia stay awake during the day, they may not help with other symptoms of IH, such as extreme difficulty making the transition from sleep to waking (called sleep inertia or sleep drunkenness) that can negatively impact mental and physical tasks and often manifests as cognitive dysfunction. The relentless nature of the disorder makes it extremely difficult for people with IH to hold down jobs, remain in school, maintain marriages, and fully engage with their family and friends.

The Scientific Advisory Board of the Hypersomnia Foundation is creating a plan to raise awareness about hypersomnia among clinical and basic science researchers. One key component of this plan is a grants program that will financially support innovative research applications that are most likely to positively impact the hypersomnia community. Announcement of this program to the scientific community will depend upon having funds in hand sufficient to attract the best science as well as sustain this initiative. There are multiple reasons that we need to fund research for IH:

  1. We don’t really know how many people have IH. This number is vital for scientists to apply for grants and so that we can encourage pharmaceutical companies to study IH.
  2. We don’t have a biomarker—a substance in the body, such as blood or spinal fluid—that can tell us whether or not a person has IH.
  3. The tests that we do have are often inaccurate, and repeating them is very expensive.
  4. No drugs have US Food and Drug Administration approval for the treatment of IH.

Your donation today to the Hypersomnia Foundation serves the mission to improve the lives of people with idiopathic hypersomnia and related disorders by advocating on their behalf, providing support, educating the public and healthcare professionals, raising awareness, and funding research into effective treatments, better diagnostic tools, and, ultimately, cures for these debilitating conditions.

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Getting Support From a Mental Health Professional

People with hypersomnia live with the constant challenges of having a chronic condition that’s not well known and is poorly understood even by researchers. Every day, there are calculations to be made:  How am I feeling? How are my meds working – or not? What do I need to accomplish – what’s realistic?  How much can I do before sleep is likely to take over?

Plans and goals may have to change, too:  What does the future hold for me? Will my symptoms or the effectiveness of my medications change?

It can be very helpful to have a support network, but many people with hypersomnia report hurtful, dismissive attitudes from family and friends. Managing a relationship and/or raising kids presents more challenges and compromises. Some choose not to tell others about their condition, especially at their place of work, and keeping that secret is likely to be extremely stressful.

With all of these issues to cope with, it’s very understandable that people with hypersomnia, like others with a chronic condition, may sometimes feel depressed and anxious. Stress, frustration, irritability, sadness, and even anger, are not unreasonable reactions.  But if these feelings frequently interfere with or prevent your enjoyment of your waking hours, it may be time to think about making an appointment with a psychotherapist.

“If I see a therapist, does that mean I’m crazy?”
I’ve been asked this many times. Usually it’s asked in a half-joking tone, but there’s a lot of anxiety behind the question.

The truth is, all kinds of people come to therapy; many have coped very well with other difficult problems in the past and are quite “normal” (however you choose to define that!). People often decide to talk to a therapist because their usual ways of coping aren’t working well for them anymore.

If you are still wavering, consider this: if there is a way to get more support, find better ways to cope, see your problems differently, or to improve your relationships – all of which are possible in therapy – why wouldn’t you explore that? (Please note that if you are feeling hopeless and having suicidal thoughts, it’s important to reach out for treatment right away:  call one of the crisis lines listed here: http://ow.ly/MVaS305zP24 for help and referrals.)

Having a chronic condition is difficult no matter how “strong” you are. Forget “crazy” – think “smart” and take care of yourself.

“How can therapy help me? What can a therapist say to me?
The best answers to these questions come from two people with IH who have spent time in therapy.

“My whole healing began with three actions; admitting anxiety was impacting my life, calling a therapist and actually going to the appointment, and making a personal commitment to rediscover my confidence, courage and grace.”

Another says: “Having now been through CBT* [cognitive behavioral therapy]/meditation for my illness [IH], I feel strongly that all of us humans need this, especially those of us with any chronic disease (or any stressor at all, which is everyone…). These are life/coping skills that should be taught starting in childhood and reinforced at every stage of life.”

There are no guarantees, of course, that one person’s results will be exactly the same as another’s, and doing the work of therapy takes time and effort. But there is also a relief in working with an objective, skilled and caring professional therapist, to know that each hour in the therapist’s office is time devoted only to you and is a place where you can speak freely and honestly. A good therapist can help you make real and lasting positive changes.

For further reading:

The Feeling Good Handbook by Dr. David Burns, MD. One of the best and most popular books about cognitive behavioral therapy.” (see below)

Full Catastrophe Living: Using the Wisdom of Your Body and Mind to Face Stress, Pain, and Illness, by John Kabat-Zinn. Meditation classes are sometimes based on this book and may be available in your area.

*Cognitive behavioral therapy (CBT) is a form of therapy that is goal-oriented; it involves examining and changing your behavior and patterns of thoughts, with the guidance and coaching of a therapist specially trained in CBT. A number of clinical studies have shown CBT to be effective for many conditions, including depression and anxiety.


Diane Powell is a Licensed Clinical Social Worker who has provided psychotherapy to clients for a wide variety of issues, both in private practice and agency settings. She is currently on the Board of the Hypersomnia Foundation.

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A Pilot Study of tDCS Looks Promising for the Treatment of IH

A Pilot Study of tDCS Looks Promising for the Treatment of Idiopathic Hypersomnia

Background

Idiopathic hypersomnia (IH) can severely impact affected individuals’ family, employment, education, and leisure activities. And because there are no FDA-approved drugs for the treatment of IH — and even those drugs that are prescribed off label are often not effective or only somewhat effective — researchers have continued to seek out non-drug (nonpharmacologic) treatments for IH.
When a group of researchers in Italy heard about the encouraging results of a study in which investigators used a positively charged electrode (anodal) transcranial direct current stimulation (tDCS) to treat the effects of sleep deprivation, they decided to try tDCS in patients with IH. tDCS is a noninvasive brain stimulation technique that creates temporary changes in the excitability of the cortex – the outermost part of the brain, which is responsible for executive function. In the United States, tDCS and transcranial magnetic stimulation are approved for the treatment of depression.

Who Were the Participants and What Did They Do?

Three men and five women with IH that had not previously been treated took part in the study. These participants were also not taking any medication for other medical conditions or had been on a stable dose of their other medicines for at least 6 months. Their average age was 35. They underwent overnight sleep testing (polysomnography) to rule out any other sleep cause of their sleepiness.

Each person completed several tests of neurocognitive function and depression and the Epworth Sleepiness Scale (ESS) before starting the study (T0) and after the study was completed (T1). They also repeated the ESS two and four weeks after the study was completed. All participants also filled out a 10-point visual analog scale (VAS) to rate their sleepiness before each treatment session and kept a sleep diary for the duration of the trial. Finally, the participants completed a test of attention, the Attentional Network Task (ANT), at T0 and T1.

Who Were the Researchers and What Did They Do?
Dr. Ferini-Strambi and his colleagues in Milan, Italy, performed neurologic examinations on each of the participants and used statistical methods to analyze the results of testing and completed scales.

The researchers applied anodal tDCS by placing one electrode over the left dorsolateral prefrontal cortex, with the cathode over the contralateral orbit. The treatment consisted of 3 sessions of tDCS per week for 3 weeks delivered between 8 am and 11 am. The researchers chose this early time of day to allow the peak stimulating effects of tDSC to subside before typical evening bedtimes so as to not interfere with sleep.

What Were the Results of the Study?

Seven of the eight participants (87.5%) reported improvement in their daytime sleepiness, including for up to two weeks after the end of the study. The results of the ESS supported this reported improvement. Average ESS scores at T0 were 13.25 and at T1 were 7.5. VAS scores dropped from 4.96 at T0 to 1.57 at T1. Improvements in the ANT were significant and reflected faster reaction times at T1 than at T0.


What Were the Authors’ Conclusions?
“The lack of a sham condition represents the main limitation of our study. In any case, our investigation supports the idea that tDCS may provide a valid alternative for the management of [excessive daytime sleepiness] in the treatment of IH and opens the way to further controlled studies.”

(A sham condition is similar to the use of placebo in a drug trial. During a randomized controlled trial that is testing a device, some of the participants are assigned to receive treatment with the device as it would normally be used. Others are assigned to treatment that appears to be using the device, but the device is never turned on or, in this case, does not deliver the stimulation. When the test is masked, or blinded, the participants do not know to which group they are assigned. This type of testing provides stronger results.)

Editor’s note: This safe procedure, tDCS, is being used regularly now for the treatment of depression. We look forward to the results of a larger randomized controlled study in IH, which, according to Dr. Ferini-Strambi, is underway. For more information on tDCS, please visit this link at the National Institutes of Health.

Galbiati A, Abutalebi J, Iannaccone S, et al. The effects of transcranial direct current stimulation (tDCS) on idiopathic hypersomnia: a pilot study. Arch Ital Biol2016:154:1-5.

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You Are Amazing!

 
Once again, our incredible hypersomnia family has come together to support each other in a most amazing way. As you know, several anonymous donors challenged our community to enroll in the Hypersomnia Foundation Registry at CoRDS during the month of September. You responded beyond anyone’s imagination—118 people enrolled, bringing the total number of enrollees to 350! Completing those questionnaires and the entire enrollment process wasn’t easy, but you persevered—and the results are tangible. Not only did you raise $5900 for research, but two researchers have already submitted grant applications to the US Food and Drug Administration and the National Institutes of Health with the intent of using data from the Registry in their research. Having this incredible resource available gives scientists a leg up in applying for funding.

Although the challenge has come to an end, it is not too late to add your piece to the hypersomnia puzzle. The more people who participate, the more likely it is that scientists will be able to complete the puzzle and find effective treatments and a more thorough understanding of the cause of IH. Go to hypersomniafoundation.org/registry for more information.


Have You Joined the Registry Yet?

A patient registry is a collection that is established to collect standardized information about a group of patients who share a common condition or experience. In the case of the Hypersomnia Foundation Registry at CoRDS (Coordination of Rare Diseases at Sanford), the people who participate have one of the central disorders of hypersomnolence: idiopathic hypersomnia, Kleine-Levin syndrome, or narcolepsy (type 1 or 2). Becoming part of the registry is easy and it could help solve the puzzle of hypersomnia! Simply go to http://www.sanfordresearch.org/cords/ and click on the ENROLL NOW button.

A patient registry is a collection that is established to collect standardized information about a group of patients who share a common condition or experience. In the case of the Hypersomnia Foundation Registry at CoRDS (Coordination of Rare Diseases at Sanford), the people who participate have one of the central disorders of hypersomnolence: idiopathic hypersomnia, Kleine-Levin syndrome, or narcolepsy (type 1 or 2). Becoming part of the registry is easy and it could help solve the puzzle of hypersomnia! Simply go to http://www.sanfordresearch.org/cords/ and click on the ENROLL NOW button.

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Communicating With Your New Doctor About Your (or Your Child’s) Rare Disorder

Note: In this article, the word “you” will be used to mean both you and your child.

You will need different kinds of doctors to help you with your rare disease. Specialists will know the most about your disease and which specific treatments are best. Many times, several specialists will be needed to help with specific parts of your disease. Doctors who treat people with rare diseases often know other specialists around the country or world and can help you find someone near your new home who is specialist in your disease. However, they are not usually the doctors who will help manage all the various parts of your care.

When you move, one of the most important new people will be your primary care doctor. This doctor will form your medical home, a compassionate, accessible, cooperative, family-centered place where you can develop a relationship and get help to coordinate your care. Most often, it will be up to the individual to find a new primary care doctor. How can you find a primary care doctor to help care for you when you have a rare disease?

It is important to know what you should consider when looking for a new primary care doctor. A good medical home works best when the doctor, their staff and you, the patient, form a team. You should feel comfortable with the doctor; be able to ask questions; have a sense the person is willing to work with you and your specialist(s), is willing to manage complex issues and coordinate care, and is open to learning about you and your rare disease. You also must be willing to be part of the team and communicate clearly and honestly with your new primary care doctor about your condition. Mutual respect will be key to building a successful relationship with your new primary care doctor. It may take several visits before you feel comfortable and develop a relationship. Sometimes you may need to see more than one primary care doctor until you find one that is best for you.

Someone with a rare disease may be a challenge for the primary care doctor. They may never have seen a person with your specific disease. You can help by providing some information about not only yourself, but also your disease. This may be a review article or reference about your disease or a website dedicated to your disease. Keep in mind that most primary care physicians have busy clinic days and are limited in the amount of time they are able to devote to each patient. It may be unrealistic to expect the primary care doctor will ever achieve the degree of in-depth knowledge about a rare disorder and the most recent research on it that you will have. The goal is not for your primary care doctor to become an expert on your specific disease (that is why you have a specialist), but to understand the problems related to the disease and be able to coordinate care with your specialist(s).

Prior to your first appointment, make copies of important documents to take with you. Consider making a binder or electronic file of important information and your own summary. Ask your previous specialist for a summary letter describing your disease, your specific problems, and your current treatments. This is very valuable for the busy primary care doctor who may not have the time to go through extensive records. These will be helpful not only for your new primary care doctor, but also any new specialists you see. You should also get a copy of your medical records from your specialists, hospitals where you were admitted, and your previous primary care doctor. A few key records you should get are the following:

  1. A copy of the specialist note when you first received your diagnosis, and the note from the most recent visit with your specialist.
  2. Copies of any tests that helped make the diagnosis—blood tests or tests on other body fluids (urine, spinal fluid, tissues remove for biopsies or operations), imaging (regular x-rays, CT scans, MRI scans, echocardiography, etc.), special diagnostic tests (lung function, sleep studies, psychological tests, etc.). If you have the actual image tests on a disc, that would be very helpful. You have rights to all your records (paper and images on disc) from all of your providers (including any hospital). Many providers do charge for copies. It is particularly helpful to get these before you move, as sometimes they can be hard to obtain later.
  3. If you have had tests after your diagnosis as a regular follow up of your disease, you should get copies of those as well.
  4. If you have had an operation or been admitted to the hospital, a copy of the Discharge Summary is essential. If possible, the Operative Notes for your surgeries are also useful.
  5. For children, a copy of the growth chart or a list of the weight, length, and head circumference over time.
  6. For children and adults, the immunization record.
  7. A list of current medications and the dose, any previous medications that were discontinued because they were not effective or caused side effects, and any allergies. Include experimental treatments, vitamins, supplements, herbal therapies, physical/occupational therapy, chiropractor—essentially anything you use to make your disease better.

The primary care doctor may not need to see all of these. You can refer to them during visits as needed.
Remember that your medical home with your new primary care doctor will be key to coordinating all other aspects of your health care. It may take time to find the right physician and home and to build an open and honest relationship. However, a good medical home, with you as the focus of the team, will help coordinate services and provide comprehensive care and ensure that you stay healthy.

Bonita Fung, MD, and Kim McBride, MD, Bexley, OH

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Ask The Doctor: Idiopathic Hypersomnia vs Type 2 Narcolepsy

Question: Is there an overlap between idiopathic hypersomnia and type 2 narcolepsy?

Answer: The short answer to this question is yesThe only way to definitively distinguish idiopathic hypersomnia (IH) from type 2 narcolepsy (T2N) is the number of sleep-onset REM periods (SOREMPs) on diagnostic testing. However, in a group patients with IH, T2N, or symptoms of excessive sleepiness who had normal results on a single Multiple Sleep Latency Test (MSLT), researchers showed that the diagnosis changed more than half of the time when the MSLT was repeated1—this means that some patients initially diagnosed with IH may later have a diagnosis of T2N, and vice versa, or they may have no sleep disorder diagnosed and then have T2N or IH on another MSLT, and, again, vice versa. In the general population as a whole (ie, not just those who are sleepy), the presence or absence of SOREMPs on repeated MSLTs is also quite variable,2 suggesting that this may not be the best feature to use in discriminating among diseases. Indeed, prominent narcolepsy researchers have concluded that the presence of “2 or more sleep-onset REM periods [eg, on the MSLT] does not appear to have any specific pathognomonic significance.”3

The idea that T2N can overlap in some of its clinical symptoms with IH, as opposed to MSLT features (that is, “signs” of REM sleep on napping), was first proposed by the Czech sleep neurologist Bedrich Roth.4 In noting that many patients with T2N experienced long sleep periods and sleep inertia, he proposed that both IH and T2N might be considered as part of the same phenotypic spectrum or continuum of “disease.” Roth’s interpretation found further support in his recognition of a potential common heritability in these primary hypersomnias (that is, individuals with T2N and others with IH often have family members with the other condition).

Additional support for concluding that T2N and IH are more alike than they are different comes from four independent sources and lines of inquiry.

  • First, nearly 20% of people with T2N sleep continuously for long periods (for example, for 11 out of 24 hours, thus, meeting the criteria for a diagnosis of IH).5
  • Second, bioactivity that enhances the inhibitory function of GABA has been found in the cerebrospinal fluid (CSF) of many people with T2N and people with IH, whereas the same CSF samples exhibit normal levels of hypocretin.6
  • Third, a substantial proportion of people with T2N and people with IH whose sleepiness/hypersomnia does not respond to traditional wake-promoting medications and whose CSF samples share an ability to excessively enhance GABA function respond positively to medications that are intended to suppress this enhancement (for example, flumazenil and clarithromycin).6,7
  • Fourth, results of a process called “cluster analysis” suggest that symptoms of IH (without long sleep time) and T2N are more similar than they are different.8 In cluster analysis, symptoms are compared among people while ignoring their official diagnosis, and new categories are created based on which symptoms or signs tend to occur together. In this study, three new “clusters” of disease were created:
    • People with T1N
    • People with IH with long sleep times (based on ICSD-2 criteria)
    • People with either T2N or IH without long sleep times

 

References

1          Trotti LM, Staab BA, Rye DB. Test-retest reliability of the multiple sleep latency test in narcolepsy without cataplexy and idiopathic hypersomnia. J Clin Sleep Med. 2013;9(8):789-795. PMID: 23946709.
2          Goldbart A, Peppard P, Finn L, et al. Narcolepsy and predictors of positive MSLTs in the Wisconsin Sleep Cohort. Sleep. 2014;37(6):1043-1051. PMID: 24882899.
3          Singh M, Drake CL, Roth T. The prevalence of multiple sleep-onset REM periods in a population-based sample. Sleep. 2006;29(7):890-895. PMID: 16895255.
4          Roth B. Narcolepsy & Hypersomnia. Basel, Switzerland: S. Karger Ag; 1981.
5          Vernet C, Arnulf I. Narcolepsy with long sleep time: a specific entity? Sleep. 2009;32(9):1229-1235. PMID: 19750928.
6         Trotti LM, Saini P, Koola C, LaBarbera V, Bliwise DL, Rye DB. Flumazenil for the treatment of refractory hypersomnolence: clinical experience with 153 patients. J Clin Sleep Med. 2016 [Epub ahead of print]. PMID:26149554.
7         Trotti LM, Saini P, Bliwise DL, Freeman AA, Jenkins A, Rye DB. Clarithromycin in gamma-aminobutyric acid-related hypersomnolence: a randomized crossover trial. Ann Neurol. 2015;78(3):454-65. PMID:26094838
8         Sonka K, Susta M, Billiard M. Narcolepsy with and without cataplexy, idiopathic hypersomnia with and without long sleep time: a cluster analysis. Sleep Med. 2015;16(2):225-231. PMID: 25576137.

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Beyond Sleepy in Boston: the 2017 Hypersomnia Foundation Regional Conference

SAVE the DATE

June 3 and 4, 2017

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We have booked Rabb Hall at the Boston Library for another fabulous regional conference featuring dynamic speakers on Sunday afternoon, June 4, 2017. In this completely renovated, state-of-the-art, yet historic facility, our outstanding speakers will cover all of the latest research on idiopathic hypersomnia and related disorders. In addition, we have planned social events on Saturday afternoon, Saturday evening, and Sunday morning to connect with friends old and new.

Boston has so much to offer, and we would like your input regarding what you would like to do. Please respond to the survey linked here (https://www.surveymonkey.com/r/BeyondSleepy2017) to provide your feedback. Completing this very brief survey is not a commitment that you will attend the conference, but we would like to get an idea about numbers of people to anticipate, as well as to set aside an adequate room block and select your preferred social events.

Note that the costs quoted in the survey are estimates of actual costs, since pricing can change depending on the number of people who will book a hotel room and how many people will participate in the activities. Please complete this short survey by October 19, 2017. Registration will open on November 15th.

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Service Dogs – Part 2: Different Types and What They Do

Many people are surprised to learn there are more than a dozen different specializations for service dogs. There are diabetic alert dogs, severe allergy alert dogs, visual assistance dogs, hearing dogs for the deaf, wheelchair assistance dogs, psychiatric service dogs, brace/mobility support dogs, medical alert dogs, seizure assistance dogs, and dogs for autism, post-traumatic stress disorder (PTSD), and more.

According to the Americans with Disabilities Act (ADA, 1990), a dog is considered a “service dog” if it has been “individually trained to do work or perform tasks for the benefit of a person with a disability.” A disability is a “mental or physical condition which substantially limits a major life activity.” Examples include the following:

  • Caring for one’s self
  • Performing manual tasks
  • Walking
  • Seeing
  • Hearing
  • Speaking
  • Breathing
  • Learning
  • Working

Other disabilities may not be visible.

  • Deafness
  • Epilepsy
  • Psychiatric conditions
  • Diabetes

To be considered a service dog, the dog must be trained to perform tasks
directly related to the person’s disability. Some service dogs perform two or more functions for their disabled handler, such as a brace / mobility support dog and a seizure assistance dog. There isn’t a clear way to classify all types of service dogs, nor is classification particularly important under the ADA as long as the dog is a service dog. The dog’s type, function, title, or classification is usually left up to the dog’s handler. The following are some ways in which service dogs can assist their handlers.

Allergy Alert: The service dog can alert its handler to life-threatening allergens that may be in the area, especially tree nuts, gluten, or shellfish.

Autism Assistance: The service dog can help to calm or ground an individual who has autism via tactile or deep pressure stimulation. The dog may also assist in teaching life skills, maintaining boundaries, or finding a “runner.”

Mobility Support / Wheelchair: A brace/mobility support dog works to provide bracing or counterbalancing to a partner who has balance issues due to a disability. Many brace/mobility support dogs also retrieve, open/close doors, or do other tasks to assist in day-to-day life or in an emergency. Dogs may also assist their partner by retrieving dropped objects, opening doors, retrieving the phone, helping with transfers, or doing anything else their partner may need.

Diabetic alert: These dogs can alert their handler to dangerous or potentially deadly blood sugar highs and lows. Many dogs are trained to call 911 on a special K-9 Alert phone if their partner cannot be roused.

Hearing Assistance: Hearing assistance dogs can alert their deaf handler to environmental sounds, including, but not limited to, alarms, doorbells, knocking, phones, cars, or their name.

Medical Alert: These dogs are trained to alert their handler to dangerous physiologic changes. such as spikes or drops in blood pressure, hormone levels or some other parameter or to recognized an identifiable symptom.

Psychiatric Service: Psychiatric service dogs assist their handler with a psychiatric disability such as anxiety, depression or PTSD via specific trained tasks.

Seizure Response: These dogs respond to their handler’s seizures via trained tasks. The dog may retrieve medication, utilize deep pressure stimulation to end a seizure early, fetch a nearby person to help or call 911.

Visual Assistance: Also know as guide dogs, these animals help their visually impaired or blind handler to navigate the world.

untitledKimberly Brenowitz is the Master Trainer with Animals Deserve Better, Inc. and Paws for Life in Marietta, GA. She can be reached at adb@animalsdeservebetter.com.

The first part of this series is available at http://www.hypersomniafoundation.org/serviceanimals-pt1/

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Wing Chun and Hypersomnia

Earlier this year, I experienced a minor miracle. After a full day of traveling and running errands, I was completely drained. The next day was a big event, and anxiety was eating at me. Would I wake up in time, would I have enough energy to be sociable, or would sleep take the reins yet again? I was faced with the option to go to sleep right then and wake up even earlier than I had planned or to get some stuff out of the way before sleep and get up as late as possible for the full day ahead. I knew that in a couple of moments my body would take any choice out of the equation, but I was still sitting upright out of sheer stubbornness and determination.

I did not have the energy to do much more than stand at that moment, but I had so much to do before I could let myself succumb to sleep. Taking another step seemed out of the question, but I could move my arms, so I started an exercise that had become a part of my daily routine. My hands followed a series of movements that comprise the beginning stages of learning Wing Chun Kung Fu, affectionately called the form, and it was not draining me like every other movement seemed to do, so I kept going.

Halfway through, my eyes opened in shock. It felt like I was waking up—not some metaphor or random realization—but actually waking up. By the time I finished, I wing_chun_single_chi_gerkwas in shock because I found that I had energy that was so distant just five minutes earlier. And for the next hour, I was able to do everything I had to in preparation for the next day. When I was done, I, not my body, was the one to make the decision to go to sleep.

The implications of what I had just experienced had my mind racing. As long as I had enough energy to stand up and start the form, I could build the energy to do more. There are still times when standing is a big ask, but I was never able to wake myself up before.

In the past, whenever my doctors would suggest exercise to help combat my tiredness, I would be so puzzled. How could I possibly think of doing anything high energy when I barely have enough energy to walk down the steps to feed myself, when I have to budget every movement in order to get anything done. The mere idea of exercise just seemed like a waste of the little precious energy that I had. But at the same time, I missed the feeling of being active like I had been in the years before hypersomnia hit me.

This past February, I reached a point where I got fed up with not feeling in control of my body. Sleep has taken so many hours from my life, and I never got a say in the matter. More than that, it didn’t let me make the most of the short time that I was awake because it was always there to pull me back under if I didn’t fight. I yearned for something, anything, to make me feel like I was in control again. I had no clue what to try—anything with cardio was out of the question.

Then I found the perfect fit by accident, or fate if you believe in that kind of thing. The movie Ip Man popped up on my “watch it again” list on Netflix, and I had just enough energy to watch a movie with subtitles. With all that had been going through my head recently, I watched this martial arts flick in a whole new light. Where before I saw a great movie with amazing action scenes, I now looked more closely at the man who was being portrayed at the center of it all. Throughout the movie, Ip Man was very tranquil and thoughtful, even in the midst of the fighting scenes, which ran counter to my interpretation of martial arts. A thought crept into my head: if he can do this while he is calm, maybe I can learn it while I am tired.

The end credits rolled, and I wrote down the style of martial arts that Ip Man practiced and taught. Wing Chun. There had to be something about the style that fostered such a temperament, one that so matched mine (albeit out of necessity at times). I immediately began to look for places in my area that taught Wing Chun… after I watched more Ip Man movies. When I visited the Wing Chun school, my suspicions were confirmed. It is a discipline that in its nature could make me feel more in control of my body, and I would be able to learn and practice it with as much or as little intensity as my energy level permitted.

When I started, I had no idea that it would translate to fueling me with energy so directly and so powerfully. My experience just two months in is a testament to how much Wing Chun is going to affect my life. As long as I have the energy to stand up and start the form, I will have the energy to do what I need to do and what I want to do. It is as if I have been walking through life thirsty in my own personal drought, rationing my energy because I had so precious little, and suddenly I have found the tools to tap into a rich well I didn’t know was beneath my feet. All because of Wing Chun!

It is my selfish hope that reading this will help you find the tools to tap into the same well of energy that I have. But no matter what, I wish you wakefulness.

Olivia Robbins, Maplewood, New Jersey

Posted in: idiopathic hypersomna, Journey

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