Disability Pension

For HSPers wondering about eligibility for a disability pension, the place to go is Centrelink http://www.centrelink.gov.au.

There is a lot of information on this website – it tells what the qualifications are for a disability pension, factors affecting the payment rates, eligibility, and current disability payment rates.

Briefly, you may qualify for a government disability pension if you are assessed as having a physical impairment and “unable to work or be retrained for work of at least 15 hours or more per week at or above the relevant minimum wage within the next two years because of your impairment”. Typically a report from your doctor or specialist would be required. You may also need to have a Job Capacity Assessment, http://www.centrelink.gov.au/internet/internet.nsf/services/assessment_services.htm to clarify what you’re capable of work-wise.

The amount of Disability Support Pension you might be eligible for depends on your income and your assets (and if you have a partner, his or her income and assets). Additional factors are considered including whether or not you’re married, if you have dependent children, how much rent you pay etc. In this section of the website, life scenarios are used as examples.

The current maximum disability payments are shown in chart form for recipient categories: single, couples and under 21 years old with no children.

It’s a good, fairly well laid out and easy to use website with a lot of information.

 

 

Seated Exercises

In the last edition there was an article on special bicycles for HSPers.  Here are some other ideas for seated exercise. You’ll notice that some of these are for conditions such as arthritis or diabetes. If you don’t see what you want here, search “seated exercise” on the Amazon website.

 

DVDs

Qi Gong (gentle exercise) for Seniors: http://www.exercisetoheal.com/Exercise+for+Seniors/?gclid=CPDB68zetqsCFY0s7AoddkEweQ

 

Arthritis based: https://arthritisvic.org.au/pages.asp?d=5A4C5A717251477C7008060C070605

 

Chair dancing options: http://www.boxndice.com.au/catalog.php?category=Exercise%20DVDs

 

http://www.chairdancing.com/

 

Sit and be Fit -includes “all sitting exercises”, balance and fall prevention, caregiver’s guide to exercise,  MS workout, Neuro rehab workout, Parkinson’s workout, Tone and stretch series…

http://www.sitandbefit.org/home

 

MULTI-MEDIA

http://www.nsccahs.health.nsw.gov.au/healthpromotion/resources/documents/SASS_orderform.pdf

 

BOOKS

Seated exercise: http://www.bsbooks.com.au/index.php?route=product/product&product_id=214

 

Chair yoga:

http://www.betterread.com.au/book/chair-yoga-exercises-for-work-and-daily-life.do

 

Other resources:

NSW Health website: www.nscchealth.nsw.gov.au/healthpromotion/resources/index.html

 

ONLINE

Wheelchair Workout Kit: https://sites.google.com/site/wheelchairexercisestore/home

 

Simple Chair Exercises – Diabetes Australia:

http://dias.diabetesnsw.com.au/PDFs/Diabetes_Prevention_PDFs/Simple_chair_exercises.pdf

 

Livestrong site with seated exercise instructions: http://www.livestrong.com/article/110522-seated-exercises-seniors/

 

 

 

 

 

 

 

Reading & News on Living with HSP

Read about a new information resource on HSP; an HSPer’s review of ‘Winning the Disability Challenge’; a magazine dedicated to wheelchair users; the latest newsletter from the SP Foundation in the US; a snow skiing HSPer, and a website for rare diseases.

 

New Source of Information on HSP

The Genetic and Rare Diseases Information Center (GARD) http://rarediseases.info.nih.gov/GARD was established by the National Human Genome Research Institute and the Office of Rare Diseases Research at the National Institutes of Health in the USA to provide responses to public information requests.

Information is provided in Spanish or English and you don’t have to be living in the US to ask a question. They do not provide genetic counselling, diagnostic testing, referrals, medical treatment or advice.

Requests can be made by e-mail, phone, postal mail or fax:

E-mail: GARDinfo@nih.gov or via their website http://rarediseases.info.nih.gov/GARD/EmailForm.aspx

Phone: from Australia +1 301 251 4925. Information Specialists are available Monday through Friday, 12:00 p.m. to 6:00 p.m. Eastern time in the US (excluding US Federal holidays) to respond to questions about genetic and rare diseases.

Mail: send your request to

GARD

PO Box 8126

Gaithersburg, MD 20898-8126

USA

Fax: fax to +1 301 251 4911

 

Winning The Disability Challenge

A Practical Guide to Successful Living

By John F. Tholen, Ph.D. (2008) New Horizon Press, Far Hills, New Jersey USA ISBN 13:  978-0-88282-290-7 ISBN 10:  0-88282-290-X

As an HSPer, I find this book inspirational.  The author, Californian clinical psychologist Dr. John Tholen, was born with a disability (having one short foot missing all 5 toes) and as an adult he injured his back, requiring major surgery and resulting in chronic pain and further limitations – and increasing his understanding of disability.  The author has been treating the occupationally disabled for over 25 years.

The book starts with some logistical information for the newly handicapped that is mainly aimed at US readers.  He doesn’t waste much time before he leaps to the heart of the matter – that we have many options and can create a life we’re thrilled with!

This author says things we don’t often hear about disability, like this, “there are always other routes to explore, some of which may be even more rewarding than the ones we were on.”   I find this an exciting idea. It can be easy to look at HSP negatively, but Tholen provides a way to see things differently – to make the most of our lives even with our disability.  He helps us understand how to do this with exercises (in the Shifting Into Gear chapter) and real life examples of handicapped people who’ve triumphed over their limitations.

This is the challenge – as we become disabled we are presented with a choice: Remain focused on what we have lost, and become resigned to feeling useless and helpless or face the challenges posed by disability, actively pursue other ways of feeling productive and attempt to carve out a rewarding life experience.  He proposes the idea of using our disability as a turning point to “find the inspiration and energy to strive forward… and explore new possibilities”. The book lays out a detailed and practical road map for meeting personal challenges on a day-to-day basis and the recommendations are backed up by concrete examples from the author’s practice, with actual results from patient case histories.

He talks about choices we make and includes several pages of comforting thoughts about disability.  I can imagine reading through these pages in future when HSP gets me down.

The large chapter on relationships has information that would apply to most people (like The Ingredients of a Successful Relationship) and more importantly he includes bits about forming stronger bonds rather than “dumping” our frustrations on others because of our disability.  He writes about:  Loving Communication, Treating Each Other Like Adults, Trying to Resolve Conflicts and Adjusting to Sexual Changes and When to End a Relationship.

From Author’s Note at the beginning of book:

“It is my hope that through this book, I will be able to share information and ideas that can provide some relief to the many individuals who each year become overwhelmed by the stresses created by occupational and physical disability.  Although it may be difficult to see from the midst of the crisis, it is almost always possible to make our lives better than had we never become disabled.”

Did you read that last sentence? … “It is almost always possible to make our lives better than had we never become disabled.”  That’s exciting!

 

New Mobility – a magazine for wheelchair users

New Mobility http://www.newmobility.com/ encourages the integration of active-lifestyle wheelchair users into mainstream society, while simultaneously reflecting the vibrant world of disability-related arts, media, advocacy and philosophy. Our stories foster a sense of community and empower readers to:

  • participate in all areas of life, including education, work, love, sex, home ownership, parenting, sports, recreation, travel and entertainment
  • be informed of and take charge of health concerns
  • obtain appropriate technology
  • assert legal rights.

Award winning… Launched in 1989…  Full color glossy magazine   wheelchair lifestyle publication. 1 year Online Only (12 issues): $14.95USD

 

Synapse Newsletter

Synapse, the Autumn 2011 edition of the newsletter of the SP Foundation in the USA, has an in-depth look at mental health:

Depression & Suicide – The Unspoken Worry, Mobility Marvels – Hand Controls for Your Car Lizzie, A New Use for Botox and more…

 

Snow-skiing HSPer

A newspaper article on an HSPer who’s hoping to qualify for the winter Paralympics ski team in the USA:
http://www.unionleader.com/article/20111125/NEWS15/711259979


PatientsLikeMe – a health data-sharing platform

PatientsLikeMe http://www.patientslikeme.com/ was formed in 2006 by three engineers, two brothers and a long time friend of a man who at age 29 was diagnosed with ALS. Inspired by the search for ideas that would extend and improve his life, the cofounders built a health data-sharing platform that can transform the way patients manage their own conditions, change the way the industry conducts research and improve patient care.

This website has over 116,000 contributing patients with over 500 medical conditions including HSP. Patient data shows current and history of treatment, scale of progression, symptoms and more. You can choose to share your own relevant data. Technology is in place to make it easy to share, find and learn from others – you decide if your data will be openly available or available just to other PLM contributors.

Currently the number of HSPers on the site is around 40. Here’s a story about the potential of a medical group communicating and using this technology. In 2008, a small Italian study was published suggesting that the drug Lithium could slow the progression of ALS. In response, hundreds of members of PatientsLikeMe began taking the drug and using a new tool and a matching algorithm to conduct a patient-led observational study. The results of that study, published in Nature Biotechnology, show that we were unable to replicate the promising findings of the Italian group, but that PatientsLikeMe may provide a useful way of conducting observational studies faster and cheaper than existing trial methods.

 

 

 

 

Mobility Technology

Mobility Technology is being developed and improved all the time. First an article on the novel Dashaway Walker and and then a look at electrically activated Ankle-Foot Orthoses (Functional Electrical Stimulation [FES]) systems that help lift the toes and prevent foot drop while walking.

 

The Dashaway Walker

The Dashaway http://www.dashaway.net/ is a forearm walker that helps you walk totally upright. No weight on your wrists and arms like a regular walker. It is easier on the back because you are not bent over.

There has been enthusiasm by some HSPers for the Dashaway walker. Kathi says “It’s the only device that allows you to stand tall, prevents falls and improves functionality”.

Another HSPer described it this way “With the Dashaway I feel more stable with walking and don’t feel like I am going to fall and stand taller using the elbow rests which make my legs and knees feel better. I have a very bad arthritic right knee that gets lots of relief from pain when using the Dashway. I like being surrounded on three sides by the Dashway, a solid structure. The best part is that the Dashaway will not move unless I release the brakes with my hands to walk around”.

On the website they call it “an upright support device for mobility and also a clinical tool for rehab”. You can see the Dashaway, including videos here: http://www.dashaway.net/. They are on Facebook at:

http://www.facebook.com/pages/Dashaway-Co-Mobility/166967043336560?sk=wall#!/pages/Dashaway-Co-Mobility/166967043336560

The Dashaway costs $1,495USD. Shipping to Australia is possible for an additional charge of about $200USD. Call to order as they like to talk to people to help assure this is the right device for you. Their US number is +1 866 968 3274.

 

Functional Electrical Stimulation (FES) systems help get the toes up when walking.

From this year’s Community Contact Initiative we’ve learned that at least one of our HSP community members finds the NESS L300 http://www.bioness.com a functional electrical stimulation system (FES) helpful.  He said it made a difference to his walking and helped to lift the foot. Unfortunately they are expensive – $9,000 for each leg – and so the cost will be prohibitive for many.

The NESS L300 Foot Drop System from Bioness is a medical device that helps certain individuals walk with increased speed and improved balance – allowing you to regain your freedom and independence. The NESS L300 uses low-level electrical stimulation to activate the nerves that control the muscles to lift the foot. The system has three wireless components that adapt to changes in walking speed and terrain, allowing you to walk easily over stairs, grass and carpet.

You can learn more and see videos at their website: http://www.bioness.com

There are at least two other brands of FES available. The Walkaide is available in Australia and can be see here:

http://www.walkaide.com/en-US/Pages/default.aspx

There is also a model called Odstock Dropped Foot Stimulator (ODFS) developed at Salisbury District Hospital in the UK. This device is currently hard to find in Australia. Hopefully with time, availability of these types of products will increase as the price decreases.

 

 

Coping & Caring

A guide for those who have a chronic disorder or look after someone with one.

  • Find professional help that is effective. Look for people with a compassionate nature, informative style, and an interest and willingness to support you in understanding and accessing the resources necessary for managing your condition and coping with life… someone who feels like an ally.
  • Be a student of the condition – learn what you can about its cause, it’s course, its possible outcomes – and especially options for treatment and management. The opposite course of action – refusal to acknowledge or talk about the condition (denial) – is a recipe for misery and anguish.
  • With many chronic conditions, our natural instincts, our theories and conclusions are very often an unreliable guide to managing, coping and caring. Why would we expect to be skilled at something like this that comes into our lives? Seek information and learn skills.
  • Chronic conditions and disability are not rare. They may seem to be, but that’s because they are not talked about. Many in your community are dealing with these in their immediate family.
  • Keep a watchful eye out for blaming (the victim mentality), either yourself or others, either silently, or spoken out loud. This can be especially detrimental to your attitude, outlook and well-being, not to mention the effect on others.
  • Also watch out for self-sacrifice (the martyr mentality). Always being the one to do without will not help you cope effectively, or care effectively if you look after someone. Sometimes carers feel guilty about not having the disability, and this can translate into self-sacrifice which is negative and detrimental to everyone concerned.
  • The alternative to being a victim or a martyr is acceptance… acceptance of the condition, combined with a determination to minimise the limitations that come with it, and a determination to make the most of the opportunities present in your life or that you create. This is the difference between being positive and negative. You are not your condition and it is not you. If you are a carer, don’t make someone else’s condition your life…  it is just a part of it.
  • For carers and the cared for to spend large amounts of time with each other may not make things better and can easily make things worse.
  • It is important to establish and maintain your own social relationships and activities (both carers and the cared for), particularly those that take you outside the home.
  • Talk about and establish appropriate independence for both of you. Respite for carers is an acknowledgement of reality, not an admission of failure.
  • Seek to understand the origins, or root causes, of the pressures to which you are subject. This understanding is essential to managing and coping.
  • Pay attention to the needs of other members of the family in relation to the part the condition plays in everyday family life, and to the care for the family member with it.
  • Achieving and maintaining good mental health for both carer and the cared for is worthy of time, attention and personal investment. At the end of the day, it is the ability to adapt and change, to see things differently, that distinguishes those who manage and cope well from those who do not.
  • Don’t be slow to seek professional help to achieve and maintain good mental health for both carer and cared for. This may involve a counsellor, support group, reading material or a combination of these, together with tools such as skilled relaxation and lifestyle choices conducive to a positive outlook.
  • Above all, and first and foremost, take very great care of yourself.

Further Reading:

Beating the Blues: A Self-Help Approach to Overcoming Depression

by Susan Tanner and Jillian Ball

Dos and Dont’s for friends: an article on the SP Foundation website http://sp-foundation.org/content/community/tips-friends.html

Websites:

http://www.blackdoginstitute.org.au/

http://www.beyondblue.org.au/index.aspx?

http://moodgym.anu.edu.au a free, interactive, online self-help guide

http://www.hspersunite.org.au/resources/

 

Maintaining Fitness and Mobility

Rick Barry, an HSP community member from NSW, tells his story . . .

I ‘retired’ from Basketball to start a family in 2000, and after a few years my son and I began to kick a soccer ball around. It was at these times that I noticed that the quick change-of-direction movements seemed a bit strange and awkward. I simply put it down to me not exercising as much as I was earlier in life and that I was just ‘getting older’, (if only it were that simple…)

After a couple of years of this awkwardness increasing, I visited a Neurologist based on my GP’s advice. This was the start of almost 12 months of testing until I was diagnosed with HSP.

I was dumfounded and it seemed like my life was turned upside down. Once I had come to my senses I decided to seek a second opinion to be sure this life changing diagnosis was not made in error. The second opinion directly reflected the first and it was from this point on that I truly admitted to having an ‘issue’ and began coming to terms with what was going on.

In the early days I mainly stretched my quads, hamstrings and calf muscles to maintain range of motion – strength wasn’t an issue back then. Then I progressed to specific exercises to address the bad habits I had developed over time, such as using the larger muscles to try to compensate for the smaller ones that weren’t doing their job properly.

I had regular Physio visits, saw an Exercise Physiologist and looked at alternative therapies, all the time searchng for that answer that we all long for. Anyway it wasn’t forthcoming, so what I have done is adopted a little bit from each person/activity to build a daily routine which works best for me.

Currently I walk unassisted and the following is what I have found works for me and I wanted to share it here and just maybe it may add ‘something to someone’.

I have 2 different programs that I alternate each weekday, and take weekends off to do family things.

Program 1

Qi Gong in the morning, (pronounced Chee Gong – and is in the Tai Chi family). This takes me around 10 minutes before work.

1 hour of Gym work. I had a program developed by a personal trainer at the gym concentrating on balance, core work and leg muscle exercises – none of this uses heavy weights.

At night I stretch all my leg muscles for around 15 minutes.

Program 2

Qi Gong in the morning

40 minutes of cycling

Qi Gong again at night

At night I stretch all my leg muscles for around 15 minutes.

 

I try to follow these programs as best I can. If there is a disruption to any of this, I simply do what I can (i.e. if its raining, I will cycle indoors).

 

Coming to Terms with HSP

Dr. Malin Dollinger, HSPer, author and Board Member of the SP Foundation (USA), recently wrote the following in response to someone struggling with the fact they had HSP:

I, and the rest of us, understand the bewilderment, uncertainty, anger, and “why did this happen to me” that we all have experienced.  There is no easy answer.  We instantly jump into the rules we learned as a child: if something is wrong with us, it must be our fault.  That may work for a poor grade in school, or a traffic ticket, or a broken promise, but if a cosmic ray hits one of our genes, or our parent’s genes, that’s not something we could have predicted or prevented. It’s not your fault.  It’s not anybody’s fault.  We do have the automatic response, “Why me?”   There is no answer to that question.  There is only, and especially, the need to live our lives as best and as full as we are able, and focus on what we are able to do, and not what we are not able to do.  And the “community” has a lot of experience, and a lot of answers to make this happen.  You can make lemonade out of lemons.

I have had HSP for some 20 years, at least I had a name for it for that amount of time.  I had increased reflexes as a small child; they thought I had polio, and I was given piano lessons to help my hands [I am now an accomplished musician].  I gave rides to my kids on my knee, not knowing that ankle clonus was part of later-to-be-diagnosed HSP.  I was never an athlete, but had no problem walking until I was about 55 [I am 75 now], and after seeing THREE neurologists I finally had the correct diagnosis. I had the gene study, and found SPG4, the most common form of HSP. In a few seconds I realized that my daughter did not have cerebral palsy, as was thought from the age of two!  She was tested and has the same SPG4 gene. My other biologic child, and my brother do not have HSP, as would be approximately predicted by the nature of this “dominant” gene– half the offspring would be expected to have HSP and half would be normal.

My daughter started having symptoms at a younger age that I did, and has bladder symptoms, that I don’t have.  So there is an example of the well-known differences in how HSP presents itself in the same family … perhaps in yours as well.

My life is now focused on dealing with HSP myself and in helping others with HSP [and a related disorder PLS] do the same. It’s not what I ever knew about, or thought about, or planned.  For many years I had this fantasy belief that this was all a dream, and that I would wake up one morning again able to walk, square dance, and clog.  I no longer have that dream, but I get physical therapy, have a variety of aids to function, canes, walkers, scooters, 85 grab bars all over my home, ramps and wide doorways where I need them, and a whole new set of rules on how to still live my life productively despite the “Horrific Set of Problems” (HSP).

I realized that I needed to convert my activities to things I could do sitting down, rather than by needing to walk.  I gave up medical practice in a large group, and went into solo practice giving cancer second opinions.  I would be able to sit in the office all day and just talk to people.  I modified my home so I could reach everything, and found new interests that did not require me to stand up, walk, run, and be instantly mobile.

There is what I would call the time of “shock” when the diagnosis is first made.  This may indeed last for a few years, and how that works and how it is resolved depends significantly on your family and your people, and how they relate to you and you to them.  You need to discover who is “on your side” and who is not.  Cultivate the former and simply smile sweetly at the latter.  You especially need a friend who simply accepts you for what/who you are, and ignores what you are not.  Those who don’t understand what you are going through, or who cannot accept you for who/what you are also have a disability. Theirs is from the neck up. Your disability is from the waist down.  It does get a bit tricky, getting help from others.  My wife, who has been a rock for me over these years, and has made my life work very successfully despite my HSP, has also learned that I often need to prove I can do things myself, and to resist her automatic urge to do everything for me.  In my fantasy world, if she helps me with everything, that proves I have a major disability from HSP. So we have constructed a system where I ask for help if I need it; that leaves me in control of my life, which you will discover, as we all have, that some kind of control, even if limited, is essential to our well-being.

You have likely realized by now how different your life has/will become, both physically AND emotionally, and yet you are still the same person, with the same ability to function and be productive, to love and be loved, and to make the most of what you do have.  From all the posts on this website that you have read you know that there is help, a thoughtful response based on experience, and often simply a listening ear.  I believe in each of us, you included, and that we can successfully pursue our lives in meaningful ways despite some damn diagnosis we don’t want and didn’t make any plans for. All of us spend considerable time helping each other, because we want to, because we have found some answers, and because we are all worthy people, yourself included.

I wish you success in getting through the pathway of adversity toward self-realization and contentment, as will need to be re-defined.  We all wish the same.

 

 

HSP and a good night’s rest

The effects of sleep on quality of life for HSPers

Many HSPers report that their symptoms, their walking or otherwise getting around are not as bad when they are well rested from a good night’s sleep. Conversely, they say that their symptoms are noticeably worse when they are not sleeping well.

Mainstream studies increasingly point to the necessity and the benefits of a good night’s sleep for everyone… HSP or not. Good sleep is associated with energy, alertness, concentration, relaxation and an overall feeling of well-being. Poor sleep is associated with feeling tired, not sharp, unable to focus, stressed, tense and moody.

Prolonged periods of one’s life in which good sleep is experienced relate to good health and well-being, while chronic poor sleep patterns are associated with illness, compromised immune system, stress and depression. Both versions are associated with spirals… good sleep with an upward spiral, poor sleep with a downward spiral.

Good sleep and how to get it

 Good sleep means:

  • Early to bed. The quality of sleep for people who are in bed by 10 PM is significantly better than for those who retire at 11pm or later.
  • Between seven and nine hours of sleep per night, with eight hours a good average number.
  • Few interruptions – waking up no more than twice a night, and being able to get back to sleep fairly easily.

 Now comes the hard part – how do you achieve a good night’s sleep?

  • Eat right, eat light… especially at night, and finish all eating at least three hours before sleeping.
  • Reduce or eliminate stimulants such as tea and coffee, cola drinks, energy drinks (these all contain caffeine), smoking or other sources of nicotine, and alcohol or other drugs.
  • Eliminate stimulants we expose ourselves to in the last hour before going to bed. This includes TV, loud music, video games, e-mailing or Internet surfing, vigorous exercise, high-energy discussions or anything else more likely to have us wound up than calmed down.
  • Bedrooms are for sleeping – move the TV out and be sitting rather than lying down when you are watching it. Your body can learn/relearn that when you hop into bed and turn the light out, that’s the signal for sleep. The same goes for reading – if you do read in bed, make it no more than 15 mins and make sure it is something soothing or calming. Eliminate as much light, and noise, as possible e.g. with heavy curtains.
  • Be as consistent as possible with the time you go to bed, and with the routine in the last hour before sleep.
  • Use relaxation and calming tools and techniques to prepare you well for good sleep either in the last 15 mins before bed or as soon as you hop into bed. http://helpguide.org/mental/stress_relief_meditation_yoga_relaxation.htm
  • If you have a restless partner or one who snores and disrupts your sleep, raise the issue with them and seriously think about sleeping separately. It is not the end of the world and may actually improve your relationship. If someone tells you that you yourself snore, and you regularly wake up tired and washed out, raise it with your doctor – you may have a treatable condition called sleep apnoea.
  • Invest in a good bed. This does not mean that you need to spend thousands of dollars… just make sure you are not sleeping on a lumpy clunker – too hard, too soft, or swoopy in the middle. Throw it out and buy something that you personally choose. The same goes for your pillow… again, choose one yourself.

Challenges to good sleep for HSPers

Good sleep can be more difficult to achieve for HSPers. Apart from all the usual suspects that conspire against a good night’s sleep for anyone, HSPers can have other issues that impact sleep quality and quantity. Muscle spasm and spasticity, restless leg syndrome and incontinence are probably the main ones. If these are affecting the quality of your sleep, mention it to your GP, to your neurologist, to your physiotherapist – and ask them what can be done to minimise the symptoms that interrupt your sleep.

Taking action… Improving your sleep

If you want your sleep to be consistently better, then reflect on and think about the various points in this article.

  1. Identify the two or three major impediments to good sleep for you.
  2. Which of these can you exert some influence on?
  3. What ideas appeal most for doing things differently?

Because sleep is such a personal issue, you need to be the one in charge of improving your own sleep. You owe it to yourself to do whatever you can to ensure a good night’s sleep.

Sweet dreams!!

 

Being in Denial about HSP

adapted from an article in the April issue of Mayo Clinic Women’s HealthSource

Denial is a common response to a stressful situation. It can be an important coping and defense mechanism. But it also can delay the appropriate response to circumstances that require action and change.


Denial in its broadest sense means refusing to acknowledge painful or overwhelming circumstances, avoiding the facts or minimizing the consequences.

Denial — or even healthy scepticism — can help people withhold judgment until all the facts are in. It prevents obsession with minor aches and pains. A cough does not mean pneumonia until it’s properly diagnosed.

When patients hear bad health news, denying or suppressing it can offer needed time to come to grips with challenges ahead. Gradually adjusting to major changes can lead to better decisions in the long run. This gradual adjustment is referred to as an adaptive response.

But denial that prevents patients from seeking treatment or leads to misuse of alcohol or drugs becomes a maladaptive or harmful response. A woman who finds a lump in her breast and ignores it misses the benefit of an early diagnosis and best chance for a cure. Denying the consequences of smoking or staying in an abusive relationship can jeopardize long-term health.

It all comes down to finding a healthy balance. When faced with an overwhelming turn of events, people can benefit from taking some time to adjust. But that doesn’t change the facts of the situation. A mental health professional can help those stuck in denial find healthy ways of coping.

Understanding denial and its purpose

Refusing to acknowledge that something’s wrong is a way of coping with emotional conflict, stress, painful thoughts, threatening information and anxiety.

When you’re in denial, you:

  • Refuse to acknowledge a stressful problem or situation
  • Avoid facing the facts of the situation
  • Minimize the consequences of the situation

In its strictest sense, denial is an unconscious process. You don’t generally decide to be in denial about something. But some research suggests that denial might have a conscious component — on some level, you might choose to be in denial.

Common reasons for denial

You can be in denial about anything that leads you to feel vulnerable, afraid, ashamed, guilty or threatens your sense of control, such as:

  • A chronic condition (such as HSP)
  • Depression or other mental health conditions
  • Addiction
  • Financial problems
  • Job difficulties
  • Relationship conflicts
  • Traumatic events

You can be in denial about something happening to you or to someone else.

Situations in which denial can be helpful

Refusing to face facts might seem blatantly unhealthy. Sometimes, though, a short period of denial can be helpful. Being in denial gives your mind the opportunity to unconsciously absorb shocking or distressing information at a pace that won’t send you into a psychological tailspin.

For example, after a traumatic event, you might need several days or weeks to fully process what’s happened and come to grips with the challenges ahead. Imagine what might happen if you find a lump in your throat. You might feel a rush of fear and adrenaline as you imagine it’s cancer. So you decide to ignore the lump, hoping it’ll go away on its own. But when the lump is still there a week later, you consult your doctor.

This type of denial is a helpful response to stressful information. You initially denied the distressing problem. As your mind absorbed it, however, you came to approach it more rationally and took action by seeking help.

Situations in which denial can be harmful

But what if you had continued to be in denial about the lump and tried to forget about it entirely? What if you never sought help? If denial persists and prevents you from taking appropriate action, such as consulting your doctor, it’s a harmful response.

Consider these examples of unhealthy denial:

  • A college student witnesses a violent shooting but claims not to be affected by it.
  • The partner of an older man in the end stage of life refuses to discuss health care directives and wills, insisting that he’s getting better.
  • An administrator periodically misses a morning meeting after drinking excessively the night before, but insists there’s no problem because the work is still getting done.
  • A couple are ringing up so much credit card debt that they toss the bills aside because they can’t bear to open them.
  • The parents of a young daughter with drug addiction keep giving her “clothing” money.
  • A family with HSP refuses to acknowledge, let alone discuss the condition or seek information, and get upset when someone else does, even isolating extended family who do talk about it.

In situations such as these, denial might prevent you or your loved ones from getting help, such as treatment or counseling, or dealing with problems that can spiral out of control — with potentially serious consequences over time.

Moving past denial

When faced with an overwhelming turn of events, it’s OK to say, “I just can’t think about all of this right now.” You might need time to work through what’s happened and adapt to new circumstances. But it’s important to realize that denial should only be a temporary measure — it won’t change the reality of the situation.

It isn’t always easy to tell if denial is holding you back. If you feel stuck or if someone you trust suggests that you’re in denial, however, you might try these strategies:

  • Honestly ask yourself what you fear.
  • Think about the potential negative consequences of not acknowledging reality.
  • Allow yourself to express your fears and emotions.
  • Try to identify irrational beliefs about your situation.
  • Write a diary about your experience.
  • Open up to a trusted friend or loved one.
  • Participate in a support group.

If you don’t seem to be making much progress dealing with a stressful situation on your own — you’re stuck in the denial phase — consider talking to a mental health provider. He or she can help you find healthy ways to cope with the situation rather than trying to pretend it doesn’t exist.

When a loved one needs help moving beyond denial

You might find it incredibly frustrating when someone you care about is in denial about an important issue. But before demanding that your loved one face the facts, take a step back. Try to determine if he or she just needs a little time to work through the issue.

At the same time, let the person know that you’re open to talking about the subject, even if it makes both of you slightly uncomfortable. Ultimately, this may give your loved one the security he or she needs to move forward and take action.

If your loved one is in denial about a serious health issue, such as depression, disease or an addiction, broaching the issue may be especially difficult. Offer support and empathetic listening. Don’t try to force someone to seek treatment, which could lead to angry confrontations. Offer to meet together with a doctor or mental health provider. If the impasse remains, consider counseling for yourself to help you cope with your distress and frustration.

The earlier you take care of a problem the less of a problem it will be.

________________________________________________

Deepak Chopra, self-help author, on Denial:

 

Denial is looking past the problem instead of facing it. Psychologists consider denial the most childish of the three behaviors because it is so intimately linked to vulnerability. The person in denial feels helpless to solve problems, the way a young child feels. Fear is linked to denial, and so is a childlike need for love in the face of insecurity.

The underlying idea is “I don’t have to notice what I can’t change in the first place.” You can catch yourself going into denial when you experience lack of focus, forgetfulness, procrastination, refusing to confront those who hurt you, wishful thinking, false hope, and confusion. The main external sign is that others don’t depend on you or turn to you when a solution is needed. By pulling your attention out of focus, denial defends with blindness. How can you be accused of failing at something you don’t even see?

You get past denial by facing up to painful truths:

  • Honestly expressing how you feel is the first step. For someone in deep denial, any feeling that makes you think you are unsafe is generally one you have to face.
  • Denial begins to end when you feel focused, alert, and ready to participate despite your fears.
  • How do I break through the illusion of denial? As long as you look the other way, illusion persists, so you must pay attention.
  • Do this by sitting quietly and with firm but gentle resolve ask for your true feelings to come forward.
  • Be with any source of pain in your body. Feel it directly, no matter where it is.
  • Now ask the pain of every kind to gather in your heart. As it gathers, ask each aspect of suffering to name itself. Be as specific as possible.
  • Having defined specifically the exact emotion you are experiencing, whether it is fear, anger, guilt, or depression, express the origins of this feeling to yourself through writing or journaling. Be careful not to use the language of victimization.
  • Once you have completed this task, share these feelings with someone you can trust.
  • Next you may release them through a ritual of your own devising – such as dancing, or burning the papers on which you have written down your experiences.
  • Finally, celebrate the release of this blocked energy. Instead of denying your suffering, which only prolongs it, now you have defined, expressed, shared, released, and celebrated it – and moved on.

 

 

 

 

Cycling for HSPers

We had an enquiry at the Foundation a little while ago about adult tricycles from an HSPer. This prompted us to explore what was out there, as cycling ranks up there with aquatic exercise in allround suitability and safety for HSPers. What we found was a huge range of special bikes available.

 

Luckily there is more technology available out there than ever before, so we can find something that works for us and much more than that, we can find a way to challenge ourselves and have fun. And, with summer just around the corner, it is the perfect time of year to consider taking up cycling.

ADULT TRICYCLES

. . .
. . .

Tricycles/Trikes have advantages over regular bikes: You can stay on the seat with your feet on the pedals when you stop. Carrying a pack or parcels is much easier with the increased stability, and you don’t have to worry about tipping over.  Included in the following you’ll even find a low frame trike, an electric trike and more specialty trikes for adults and kids, even recumbent trikes and folding trikes.

http://www.bumsonbikes.com.au/bikes/adult-trike-c-516.html

http://www.bicyclestore.com.au/indi-rambler-tricycle.html

http://www.bodycyclesaustralia.com.au specialise in tricycles for special needs; customise bikes as well; Adelaide based, but ship Australia-wide.

http://www.achievableconcepts.com.au/Aust%20website/cyclinggomier.htm

http://www.achievableconcepts.com.au/Aust website/BMX trikes.htm

http://www.aaev.com.au/trikes/

http://www.greenspeed.com.au/index.html

http://trike-bike.com.au/ advertise as the largest seller of adult trikes in Australia; Gold Coast based but ship everywhere. They have a large range that includes folding and electric trikes.

. . .
. . .

HAND CYCLES

These are designed for cyclists who can’t pedal with their legs, or those who want an upper-body workout. They are actually trikes, and many look kind of like a wheelchair in the back, with a third tyre out in front, and a pedal set in front of the rider at chest level.

http://www.invacare.com.au/index.cfm/1,232,0,33,html/Handcycles

http://www.wickedwheelchairs.com.au/sports_chairs_handcycles.php

http://www.gtkrehab.com.au/page17810/Products.aspx?productid=11297

ELECTRIC TRIKES

. . .
. . .

These include a 3 Wheel Tricycle, Easy Boarding bike, Foldable Bike and electric conversion kit. They operate from rechargeable battery storage. You can still pedal as much as you like, but the convenience of being power-assisted can be great for going up hills.

http://www.reefbikes.com.au/

http://www.electricbicycle.com.au/models.html

http://www.nope.com.au/products/electric-bikes/

http://www.shoprider.com.au/electric-mobility-vehicles.asp

 

CONVERT TO ELECTRIC

You can convert what you have now to electric.

http://dutchcargobike.com.au/product/e-bikes/

STABILIZER WHEEL KIT

You can add wheels for stability to the bike you have now.

http://www.achievableconcepts.com.au/Aust%20website/cycling.htm

http://www.bicyclepartswholesale.com.au/contents/en-us/d137_bicycle_training_wheels.html

http://cyclehire.com.au/training_wheels.html

Folding Trike
Folding Trike

MISCELLANEOUS

If you still haven’t found what you’re looking for, or you’re hungry for a bargain, you can search fishpond or eBay, and check your local classifieds.

http://www.fishpond.com.au

http://www.ebay.com.au

INDOOR EXERCISE BIKES

If you’d rather get fit without going outside, or just to have a wet-weather or winter alternative, here are a few of the exercise bikes available.

http://www.aussiefitness.com.au/categories/Fitness-Equipment/Exercise-Bikes/Recumbant-Bikes/

http://www.vhhe.com.au/Products/Roamer-Recumbant-Bike

http://www.worldfitness.com.au/product_info.php?products_id=475

http://www.fitnesschoice.com.au/shop/scdproducts.asp?CatID=92

http://www.nustep.com/  check out the NuStep Recumbent

http://motomed.com/  These are available in Australia ( http://www.motomed.com.au/contact.php )and advertise spasticity reduction.

 

So there you have it… happy cycling!