Author: SSAdmin

Different parts of the puzzle

Chair of the HSP support group in the UK, Adam Lawrence, shared these reflections on mental health.

Adam writes …

If you have a rare disease (like HSP) or a disability, there seems to be quite a burden with potential to affect mental health. This post simply seeks to note down the different areas worthy of attention.

Uncertainty

Simply, when you have a condition there are many more variables which can affect your future in ways that you cannot evaluate. Your future is less certain, and that uncertainty can be a burden, more so if you are the type of person who likes to plan their future in great detail.

Understanding

The burden of a condition or a disability is greater if you don’t know about it. Understanding can be improved if you know:

• The name of your condition/disability and you have a firm diagnosis
• What symptoms might occur (and how they might affect you)
• What cures or treatments are available (noting, no cure for HSP at the moment)

This area can be even more frustrating if the healthcare professionals you are seeking this information from do not understand what you have, or what you are seeking the answers for.

It is important to remember that you may be seeking answers that do not yet exist, and in that case the healthcare professional should be honest with you and say that there is no answer. They may be able to give you their opinion, or an approximate answer, or between you work out where to go looking to reduce this uncertainty. 

Support

The old saying ‘a problem shared is a problem halved’ is true! Having a disability or condition can be a very lonely isolating experience, especially if you feel like you are the only person in the world going through your situation.

Being able to talk with someone you can trust can make a massive difference to your wellbeing.  If you are able to find a community of people who have the same or similar conditions can help you feel that you are not so unique, and you will know that there are other people who are going through the same things that you are.

This kind of environment can also help on the understanding front, as within these communities there are people who are happy to share how they have overcome their own barriers, and their top tips for getting through life. You are often able to draw parallels between your situation and theirs and seek a path which you can either choose to follow or choose not to follow. These types of discussion can help reduce your uncertainty.

The communities can also be a place to share your frustrations and simply voicing these can help. Equally you may find benefit from listening to others share their frustrations. 

If you don’t like the idea of finding a community of people with the same/similar conditions, and there is no-one in your close circle of friends or family that you feel you can talk with, then you could always reach out to more general mental health charities or groups. 

Change

We are all getting older, one day at a time, with our lives slowly changing as a result. If you have a progressive condition like HSP then your life may be changing at a different rate or in a different direction to the general path of change with age.

Having some awareness of potential changes can work either way. Those that like to plan well in advance may benefit from an understanding of how their future may be different from their present. Others may not like to consider how different their future may be. If you have HSP I think it is worth considering potential changes in the following areas:

• Mobility – your mobility is likely to change, and you may need to think about the use of mobility aids.
• Other symptoms – pain, fatigue and bladder problems (among others) can mean further changes on top of mobility changes – not everyone is affected by these (or other) symptoms.
• Travel – changes in your mobility may affect how you can travel, and if you enjoy travelling you may wish to think about how you may travel in the future
• Employment, hobbies and activities – any of those factors have potential to affect how you can do those things that are important to you. You may wish to think about how you can do things in a different way or from a different perspective to keep doing these important things.
• Your home – if your mobility changes a lot, you may need to think about changes to your home, to help you be able to move about your home and keep on with those day-to-day life essentials as independently as you can.

Grief

If you feel that you are missing out on futures which now seem to be difficult or impossible, then you may be grieving the loss of your future self. Grief is a natural process, but the process of grieving can be painful and take time. You may have to visit this process a number of times as your life changes.

Acceptance

If you do not feel that you have the condition that you have been diagnosed with, then you may not be accepting of your current situation. Accepting who you are and what you have can be a difficult process, but once you have accepted this you may be in a better position to consider what your future self may have to deal with. You may have to visit this process a number of times as your life changes.

Once you accept your own situation you can subsequently start to deal with accepting that others may see you as ‘different’. If you have a condition like HSP and your mobility is greatly affected then people will always see your mobility aids because they are different from ‘normal’. 

The acceptance part of using or changing mobility aids is twofold, firstly accepting that you are comfortable using a mobility aid (or a different mobility aid), and secondly accepting that other people will have an opinion about you, your condition and your new/different mobility aids. You cannot control what others think about you, their opinion is more about their upbringing than your situation. You are likely to be balancing the benefits of using the mobility aid against the mental ‘cost’ of being seen to be different.

Disclosure

Following from the process of accepting your own situation comes the next part of the journey, being able to share your story with other people.  

Some of the time it may not be important to disclose to other people that you have your condition, but in other cases it can be. The benefits of disclosure can be greater when you find day-to-day tasks more difficult, and in these situations disclosing your situation can help improve other people’s understanding of your situation. On the opposing side, once you have disclosed your situation it becomes more easy for you to be put in a different box than you were before, and that (or the potential of that) can be a hard thing to accept. In theory, disclosure should open up avenues to support rather than block off progress to your future self, but I accept that it is not always as clear cut as this!

Depending on your situation you may feel the need to disclose your situation to your family or friends, to your doctor or other healthcare professionals, to your employer(s), to any insurance companies, to your driving licence authority, to your bank or mortgage provider (and so on).  

Summary

My journey in this area spends most of the time moving between the Understanding, Support and Change areas with the objective of reducing my own Uncertainty about the future. I don’t often need to visit the Grief area, but I do spend some time in the Acceptance area. As my mobility is not affected significantly, I have not had to deal much with the Disclosure area in official channels, but I feel that I will need to spend more time considering acceptance before I officially disclose more. 

In terms of this blog, I will carry on sharing my story, in all its forms of disclosure! I will also carry on my annual surveys to share the wider picture of life with HSP, to help people with HSP form their own views about how their paths are different from/similar to others. It all helps me, and from some of the comments I receive I know it helps others too.

SOURCE:  http://hspjourney.blogspot.com/2021/05/mental-health-awareness-week.html

Mental Health Awareness Week

Adam Lawrence

Is it legal? Is it available?

Many people with HSP are interested in the potential for the medical use of cannabidiol oil (CBD), a cannabis derivative, to help with the symptoms of spasticity, restless legs and pain.

Here is a recent news article on the topic from the ABC:

As of 2015 CBD oil is legal in Australia, as long as it contains at least 98% cannabidiol and 2% or less of other cannabinoids found in cannabis. When compared to a lot of other countries, like the US, Canada, Japan, Germany, Switzerland, UK, Netherlands, we’re quite behind.

CBD has recently changed from Schedule 4 (prescription only) to Schedule 3, which means you should be able to get low dose CBD (max.150 mg daily dose) over the counter at your local pharmacy.

However, there are currently no TGA approved products on the Australian Register of Therapeutic Goods (ARTG) that meet the Schedule 3 criteria. And that process of approval could take years.

How do you actually get CBD oil?

“CBD got caught up in the whole medical cannabis legalisation thing that happened from late 2016,” explains Dr Iain McGregor, Professor of Psychopharmacology, University of Sydney. As part of that, there was a “torturous process” set up for Australians to access CBD, whereby you had to go through a doctor, hope said doctor is educated about CBD and is in favour of its use, then persuade them that CBD is right for you, then they would need to write a complicated application and send that off to Canberra to the TGA who would then decide either way.

The difference now is that Authorised Prescribers (AP) don’t need to apply to the TGA via the Special Access Scheme (SAS), they can write you a prescription on the spot. These APs can be either specialists or a GP, but there’s no full list right now, so your best bet is to start making some enquiries.

As of 2020, out of the approvals issued in total in over three years, Dr Iain estimated that about 20,000 patients gained access legally (when you take into account the prescription renewals throughout that time). “And there’s probably 10 times more people — certainly from our surveys — that are accessing illicit cannabis and self-medicating.”

The government and researchers are well aware that people in Australia are opting to bypass the current system and spend their money offshore, buying online from places like Canada and the US. But there are signs that prices will go down, since obviously there’s an increasingly competitive market for it.

The good news in all of this is that the strict regime tends to ensure high quality control of the product. “By being careful and quite well regulated the Australian scheme is probably going to give rise to very good products that will have a lot of export potential,” says Dr Iain. “The unfortunate thing is, Australian consumers are having to wait a very long time to get these products and at a reasonable price.”

Dr Iain says to “watch the hype.” He points to when cocaine was first invented, when they thought it would be a great cure for opium addiction and you could just chuck it in any old fizzy drink. “You always get this huge hype [around new drugs] and you do have to let research run its course. Big clinical trials take several years to complete; five years from now we’ll know a lot more about CBD and it’s potentials and limitations.”

“The hype is almost certainly wrong. The idea that it’s just a placebo is almost certainly wrong, as well. So the truth is somewhere in between. What we have to do as scientists is work out what that truth actually is.”

As a neuroscientist, Dr Katrina Green of the University of Wollongong is particularly interested in the developing brain and the short and long term effects of cannabidiol use on it. “A lot of people say that CBD is non-psychoactive but psychoactive is defined as something that interacts with the brain and changes behaviour. Now that applies to THC, alcohol, heroin, whatever. CBD is absolutely psychoactive, it’s just psychoactive in a good way.”

Read more

SOURCE: What’s the deal with getting and using CBD oil in Australia?

By Claire Bracken

ABC News, Wednesday 18 August 2021 9:51am

Significant benefits reported

Florida (USA) runner David Steinberg, like his brother Luke, experienced success in cross country athletics in high school, He then completed the Disney Marathon in just over 3 hours in 2012.

Today, Steinberg is dealing with SPG11 Hereditary Spastic Paraplegia. The diagnosis of his HSP came about a year ago after a dramatic, but successful finish of a marathon in Columbus, Ohio in 2018 despite severe dehydration and cramps.

The family found Hope Therapy in Middleburg, Florida a renowned Hippotherapy non-profit. “I found them on the internet and decided to give it a try,” said Mary Steinberg. “It’s a different experience for David; he likes horses and I read that the movement of a horse is similar to human walking movement.”

“We want to keep his mobility to walk and stay out of a wheelchair,” said Mary Steinberg. “This was his third session on the horse and we have seen more erect posture, he can side step better and he has improved range of motion with his legs”. David said “I feel a lot looser when I get off the horse. I’d like to run again.”

Read the entire article

SOURCE:  Clay Today, Wednesday, May 5, 2021

Hope Therapy bringing life back to racing legs

by Randy Lefko Sports Editor

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Riding for the Disabled Association Australia (RDAA)

RDAA is a voluntary, nonprofit organisation that provides opportunities for anyone with a disability to enjoy safe, healthy, therapeutic, horse-related activities in Australia. 

You can learn a lot more here: https://www.rda.org.au/

To find an RDA centre near you, start here: https://www.rda.org.au/contact/

There are centers in every state.

Valley RDA, Queensland

Valley RDA is situated in the beautiful Gold Coast hinterland at the southern end of the Gold Coast. It is nestled in the Tallebudgera Valley surrounded by many equine breeding, training, spelling and agistment properties. We share our grounds with the Tallebdugera Pony Club where we started 19 years ago.

Our facilities are continually being upgraded with a full size outdoor sand arena, an undercover arena, another smaller grassed arena for our games, a sand roundyard, bush/trail riding paddocks fronting the Tallebudgera River and a large grassed area for mounted games.

Our centre is run on a total volunteer basis including volunteer placements from Bond and Griffith Universities, local high schools, Rotary Clubs and of courses the general public.

Our volunteers include a fully qualified coaches – One Level 2 coach and National Assessor, 2 Level 1 coaches and 4 OTC (Training) coaches, 1 Hippotherapist and 3 Hippotherapy Horse handlers.

Learn more:  https://www.rdaq.org.au/valley/

RDA SA

Many different horse-related activites are available through Riding for the Disabled. 

While not all of these are provided at all centres in SA, the programs on offer are designed to be interesting and challenging, building upon each individual’s abilities towards achieving independent riding.

Learn more:  http://www.rdasa.org.au/

RDA Australia South West Centre

RDA enables people with disabilities to experience enjoyment, challenge and a sense of achievement through participation in equestrian activities to improve their quality of life, attain personal goals and develop life skills.

RDA develops the abilities of and enriches the lives of people with disabilities through sporting, therapeutic, educational and recreational equestrian activities.

RDA Centres provide suitable horses, trained volunteer helpers, accredited RDA coaches, riding and safety equipment to run a range of equestrian activities including structured riding classes, recreational horse riding, hippotherapy, mounted games/competitive riding, vaulting, carriage driving, dressage.

Learn more:  https://rdaasw.org.au

Valery Horse Trails

“Experience horse riding at its best” at Valery Trails.

Valery Horse Trails is a long established Horse Riding Centre on the Mid North Coast of NSW and holds accreditation with the Australian Horse Riding Centres (AHRC) . The centre offers trail rides, beach rdes, lessons, kid’s club, Riding for the Disabled (RDA) and tailored programs for children, young people and groups.

Located only 20 minutes south of Coffs Harbour and 15 minutes north-east of Bellingen, the property is situated on approximately 270 acres in majestic natural surroundings, with valleys, creeks, rivers  and rain forest and is surrounded by national parks and state forests. Our 40 well-disciplined horses are suitable for beginners or experienced riders alike.

Learn more:  https://www.valerytrails.com.au/

Riding for the Disabled, Griffith Centre

Provision of therapeutic riding instruction for children & adults with physical & intellectual disabilities.

The primary objective of Riding for the Disabled Association (RDA) is to provide most people with a disability, the opportunity to ride and enjoy all the activities connected with horse riding. Riding for people with a disability is both therapeutic and recreational and RDA is in fact one of the few organisations who offer a multi-diagnostic service, catering for people with a wide range of disabilities.

Learn more:  https://www.griffith.nsw.gov.au/community-services-directory/organisation.asp?id=52&m=p&org=CSD-EGD-11-03-86

Arundel Park Riding for Disabled Inc

Arundel Park Riding for Disabled Inc (APRDA) is a Not for Profit Charity Organisation founded in 1981 with the focus to provide a horse riding experience for children and adults with a disability.

For 32 years people have volunteered their time to make this service happen. We have been in our current location at Coombabah since 1985, a slice of country tranquillity in a centrally located area of the Gold Coast with easy access to public transport. Our herd of horses all have important roles and teach life lessons to so many.

Learn more:  https://www.arundelparkrda.com.au/about-aprda/

Pegasus RDA

Pegasus RDA is based in ACT.

Learn more:  https://www.pegasusact.com.au/hippotherapy.html

Riding for the Disabled Association of Tasmania

WELCOME to Riding for the Disabled Association of Tasmania (RDA Tasmania). We are an entirely voluntary, not-for-profit organisation whose aim is to provide services to people of all ages with disabilities to enable them to enjoy safe, healthy, stimulating and therapeutic horse-related activities.

Our programs are run by Nationally accredited Coaches. Lessons are planned to be fun and stimulating to build upon confidence, independence and to develop a sense of achievement.

Learn more:  https://www.rdatas.org.au/

Insights for all

from Disability Horizons

There are so many misconceptions about dating someone with a disability. We’ve asked Becky, whose partner Dan uses a wheelchair, about common disability and dating questions.

As an ‘able-bodied’ person, I’ve had a lot of people presume that dating someone in a wheelchair is dull for me. I’ve often had to set the record straight – I’m not Dan’s carer and neither of us need any pity. We’re having an amazing time and we have a healthy relationship!

I’ve complied a list of the top five awesome things about dating someone with a disability (in my opinion!). I could go on forever, listing things that are amazing about being with Dan. But I’ve tried to make this more specific to the effects that disability has on dating.

1. Communication

When someone has a disability, they usually need to be really open and honest from the start. They need you to understand their disability. They need you to know what they can do, and when they might need your help. Once that discussion is out of the way, you can get on with dating and having fun.

2. Adventures!

People often think that those with disabilities lead pretty sheltered lives. They presume that having a disability means someone is unable to be adventurous, active, and have an exciting, busy life. Dan is the perfect example of how that is usually NOT the case.

Finding out you have a condition like Friedreich’s Ataxia, certainly puts things into perspective, and makes you realise what’s important to you. This has given Dan a real zest for life and positive outlook. He wants to do all of the things he enjoys, and have loads of wonderful experiences, whilst he still can.

3. Meeting new people

Dating someone who has a disability often opens up a whole new social world. I can only speak for myself and my own experiences with Dan, but I get the impression this is the same for a lot of people who have a disability. Not only does Dan have a great support network of friends and family, but he’s also met a lot of wonderful people purely because of his disability.

4. Learning about yourself

Sometimes, we need to take a step back in order to change our perspective and learn about ourselves. Most of us hit a crossroads at some point in our lives, where we’re not sure what we want, or what our direction is. An unexpected effect that dating Dan has had is that I’ve learnt a lot about myself, and gained some clarity on my own life. As I got to know Dan, and found out more about his condition, I acknowledged that so many of us take a huge amount for granted. I also recognised that my own attitude and psychological barriers are often the things that are holding me back- not my actual ability.

5. The freebies and conveniences

The bargain-hunter in me loves this aspect! This perk is great for both the person who has a disability, and their date! So many places and attractions offer a concession, allowing one free admission with each ticket that is for someone with a disability. This aims to increase accessibility for people with disabilities, enabling their carer/ companion free entry along with them.

Read the entire article

SOURCE:  Disability Horizons 08/02/2019 

Top 5 reasons why dating someone with a disability is great

Talks about living with the condition

From BBC Sport

“You’ve got to sort of accept the way that it is and get on with it”.

It has been more than eight years since former Ireland wicketkeeper Andy Patterson was diagnosed with HSP.

As time has passed, the condition has forced the father of three to make adjustments in the way he lives his life.

For quite a while the impact was manageable; a frustration if not a totally transformative diagnosis. The disorder causes weakness and stiffness in the leg muscles, meaning running and strenuous exercise have become increasingly difficult in recent years.

The effects of HSP are irreversible, and gradually get worse over time, which is why as the rest of society eagerly readies itself for a return to something closer to normality as Covid-19 restrictions ease, Patterson too must make preparations for his own ‘new normal’.

“It’s been quite difficult the last year or so, it has deteriorated quite quickly,” says Patterson, who made 61 appearances for Ireland in the years before they gained full one-day international status – and also spent the 2000 season with Sussex.

“Now I need a walker to get around with. It kind of wasn’t real before, because there were things I couldn’t do but a lot of that you probably wouldn’t be able to do anyway with age.”

In September, Patterson and his family were informed that his strain of the condition had been identified, and that he would imminently need to use a wheelchair.

With that, a new urgency to adapt their home accordingly was introduced, and the financial reality of such an undertaking came into clear view.

“I kind of didn’t realise what a burden it was in terms of getting things done with my house and stuff like that,” Patterson says.

“Two years ago, we did stuff on the house in terms of future-proofing work with an architect.

“The next stage is getting a lift into the front of the house and getting a disabled ensuite [bathroom] in our room.

“The big thing for me is to have some sort of security in terms of my house and future-proofing a few things, so that when things deteriorate as they will, I don’t have to worry about that as much.”

The financial burden is only one consideration as Patterson comes to terms with the other realities that a deterioration in his condition will present.

“The hardest thing for me at the moment is not being able to do the stuff that I want to do with my kids and wife, and not expecting to be in this position in this stage of life,” he says.

“I find that quite difficult, where Sarah, my wife, has to do a lot of heavy lifting so to speak. Especially with the youngest [son], he’s 10 now, he’s well into his cricket and rugby and I can’t do stuff with him that I would like to do.”

Amid the worries, Patterson finds meaning in a conversation he had with former West Indies fast bowler Winston Davis, who was left paralysed from the neck down after falling from a church roof.

“There’s things that you can control, and things that you can’t control,” recalls Patterson of the conversation.

“And for whatever reason, this is happening so you’ve just got to get on with it, and get through it.”

Read the entire article 

SOURCE:  https://www.bbc.com/sport/cricket/56786645

‘Some things you can’t control’ – Ex-Ireland cricketer Andy Patterson on life-changing diagnosis

BBC SPORT 22 April 2021

What are the issues?

The vaccination rollout – Phase 1a is underway

The first of 142,000 doses of the Pfizer/BioNTech COVID-19 vaccine was administered on 22 February with a total of 80,000 vaccinations happening by month-end. These are going to priority recipients, called Phase 1a, comprising frontline quarantine and health workers who interact with returned international travelers, and aged and disability care staff and residents. In total, this phase will cover about 678,000 people, using around 1.4m doses of the Pfizer vaccine.

Compelling evidence for vaccination

The vaccine is free and voluntary, with an unprecedented-in-human-history volume of compelling medical evidence globally supporting the safety and effectiveness of approved vaccines. There may be good reasons not to vaccinate in individual cases and these can be determined by one’s own medical professionals, however there is no scientific evidence to support the arguments against vaccination.

Phase 1b rollout will include many with HSP

The next stage of the rollout, Phase 1b, will include many with HSP based on the criterion “adults of any age with underlying medical conditions which make them vulnerable to the virus”. This phase also includes the following groups: everyone over 70, other healthcare workers, Aboriginal and Torres Strait Islander people over 55, and certain high-risk workers including army, police and those working in meat processing plants. This will cover around 6.14 million people and use up to 14.8m doses of mostly the AstraZeneca vaccine.

How will it work

Whilst the details are not yet finalised, authorities at state and federal level have said that priority groups will be “identified … based on your level of risk and invited to register for a vaccine, if you wish to receive one”. Reference has also been made to a “national booking system” for vaccination. Federal Health minister Greg Hunt said “Our goal for the public is to have a very simple access approach. So, you can phone your GP, you can phone the state clinic, or you can come through a single front door”.

Concerns for the disability community

Some disability advocates believe that the live-at-home disability community may be somewhat overlooked, especially those with significant mobility constraints and the challenge of going to get vaccinated, which is arguably the case for a not insignificant chunk of the HSP community. No plans have been announced to date to address this challenge.

We did a Q&A with neurologist Dr Kishore Kumar of Concord Hospital in Sydney, who is well-versed in HSP:

Q: Dr Kumar, how vulnerable to the coronavirus are people with neurodegenerative conditions in general, and HSP specifically? How is vulnerability conditioned by factors such as disease severity and age? 

A: I could not find any specific evidence of HSP being more vulnerable due to COVID-19, but this is probably because HSP is a rare disorder and researchers have not had time to collect the evidence. Those with complicated HSP (e.g. swallowing or memory problems) may be more at risk of severe COVID-19 than those with pure HSP.

People with Parkinson’s disease are at high risk of developing complications of COVID-19 when their disease is advanced. Recent advice suggests that the benefits and risks of COVID-19 vaccines do not appear to be different in Parkinson’s disease compared to the general population (COVID-19 Vaccination for Persons with Parkinson’s Disease: Light at the End of the Tunnel?, Bloem et al., J Parkinsons Dis).

Certain factors are known to be linked with death, severe disease, or admission to ICU for COVID-19 in the general population (Risk factors for severe illness and death in COVID-19: a systematic review and meta-analysis, Degarege, medRxiv):

• hypertension
• cardiovascular disease
• diabetes
• chronic respiratory disease
• cerebrovascular disease
• being male
• older than 60.

My assessment is that if you have another one of these risk factors you may be particularly at risk. People who are in nursing homes due to HSP may also be vulnerable to contracting COVID-19.

It is worth noting that COVID-19 can cause a range of neurological complications (Neurological associations of COVID-19, Ellul et al., Lancet Neurology) and I assess that these may be particularly harmful if they occur in patients who already have neurological problems due to HSP. Those neurological complications include brain involvement (encephalopathy), acute peripheral nerve involvement (Guillain-Barre syndrome), stroke and loss of smell (anosmia) and taste (ageusia).

Of course, it is important to follow the usual recommendations such as hand washing, social distancing, and staying at home when sick.

Q: What about side effects from vaccination? What can people expect?

A: Common side effects to the COVID-19 vaccine include pain at the injection site, headache and fever (COVID vaccines and safety: what the research says – Nature). It is unlikely that the COVID vaccination will cause a severe allergic reaction (anaphylaxis) since this side effect occurs very rarely. Currently, there is no definite link between COVID vaccinations and death. Overall, the benefits of the vaccination outweigh the risks, and this may be particularly so for patients with HSP.

Q: For the HSP community as a whole, what is your advice re COVID-19 vaccination?

A: I would strongly recommend that the HSP community get vaccinated against COVID-19 coronavirus.

Q: Are there factors that may need to be considered in specific cases?

A: The general rules regarding the vaccination would apply, it is likely to be appropriate in nearly all people with HSP, but this should be discussed with your doctor.

Q: So people with HSP should consult their GP or specialist for individual advice?

A: Please talk to your specialist and GP about whether you are suitable for the vaccination.

Q: Anything else HSPers should know?

A: A recent study from the Netherlands suggests that lockdowns can result in a reduction in physical activity in most people with HSP, which was associated with increased muscle stiffness, pain, fatigue, and problems with walking. I would recommend home exercise as much as possible during extended periods of lockdown, such as those that were experienced in Melbourne.

Get fit while you sit

 

Whether you are unstable on your feet or have pain or other issues preventing you from doing exercises standing up, or you use a chair anyway, there are plenty of chair-based options for doing exercise.

 

 

Exercising in a chair also can enhance endurance and flexibility in the upper body, says Dr A. M. Barrett, program director of the neurorehabilitation division at the Emory Brain Health Center in Atlanta. Depending on the moves, chair-based workouts could help with core and postural strength, balance, and range of motion. “If there is one thing people could do to address all their health issues, it’s exercise,” Dr. Barrett says. “And if you have trouble standing, exercising in a chair is a great option.”

Chair workouts can still be challenging, and they can be customized based on a person’s limitations and abilities. “There’s a misconception that if it’s in a chair, it can’t be vigorous,” says Dr. Jori Fleisher, associate professor of neurologic sciences at Rush University Medical Center in Chicago.

A 2019 study in the journal Research Quarterly for Exercise and Sport found that older women who did chair-based aerobic or strength exercises experienced considerable improvements in upper- and lower-body strength and agility, along with a sense of autonomy and a significantly decreased fear of falling.

 

What You Need. Find a sturdy chair that’s wide enough to allow you to move freely. Don’t use one with wheels, at least not initially. The chair should be at a height that puts your hips at or above knee level, says Ryan Glatt, CPT, a fitness trainer and brain health coach at the Pacific Brain Health Center in Santa Monica, CA. Equipment like dumbbells, ankle weights, exercise bands, medicine balls, Pilates balls, and under-desk bikes can all be incorporated into a chair workout, says Glatt.

 

How to Position Yourself. Sit toward the front of the chair, place your feet firmly on the ground, and press some weight into them, says Julie Hershberg, PT, DPT, board-certified neurologic clinical specialist and instructor in the division of biokinesiology and physical therapy at the University of Southern California. “We rely on sensory information that comes up through our feet,” she says, and getting that information helps with proprioception (the ability to perceive one’s body in space), which provides a sense of balance and spatial orientation.

 

What You Can Do. Yoga, dancing, boxing, karate, sports movements, even jumping jacks all can be done in a chair, says Glatt. “A chair can be integrated into a lot of different exercises, and you can incorporate sit-stand exercises as well.” Even people who don’t have physical limitations can benefit from doing stretches in their desk chairs throughout the day or taking a break to do a series of triceps dips or squats using chairs. Wicken calls this “neuro-snacking.” He explains: “Your brain responds really well to intervals of stimulus. Doing short bouts of movement while sitting helps you stay fresh, focused, and neurologically stimulated.”

 

Online Chair Exercises

Seated workouts: Zumba, cardio, stretching, strength-building  (see them all here)

Zumba exercises with Nancy D.

https://www.abovems.com/en_us/home/ms-wellness/exercise-fitness/zumba-exercises.html

Stationary cardio with Nancy D.

https://www.abovems.com/en_us/home/ms-wellness/exercise-fitness/stationary-cardio.html

 

Sit and Be Fit: sitandbefit.org

YouTube Sit and Be Fit videos

https://www.youtube.com/user/SitandBeFitTVSHOW

 

Read the entire article.

 

SOURCE: Brain&Life Exercise December 2020/January 2021

By Stacey Colino

 

Free online courses

2020 has been rubbish in so many ways, and it’s yet unclear how long restrictions will continue. So why not take your life into your own hands for 2021 by brushing up on your skills and knowledge?

There is a huge variety of free online courses available, removing any accessibility issues – perfect for helping you to get back on track for the new year. Here are 8 interesting websites offering FREE courses to whet your appetite.

1. Ted-Ed PIC/Utube link

Ted-Ed, the spin-off from Ted Talks, hosts thousands of video lessons for free. Topics range from art to mathematics and most subjects in-between.

Most of the lessons are animated and under 10 minutes long. I found this lesson on How The Food You Eat Affects Your Brain both informative and entertaining.

2. Future Learn

Alongside paid courses, Future Learn offers free online courses on a variety of subjects. This course on songwriting caught my eye, but there is lots more to discover.

Filter by topic to get more of a general idea of what’s on offer or simply search for your subject of interest using the search bar. Be aware that the paid courses will be shown to you as well.

3. Alison
   

If your focus in 2021 is your career, then look no further than Alison. It has a huge range of free courses on anything from project management and human recourse to mental health and nutrition. You can view all its courses by:

• category – including health, marketing, science and IT
• whether it is a certificated course, a diploma or ‘learning path’ (niche courses)
• job/career so that you can find a course that will help you get into your chosen field.

There is also a section on careers advice and guidance based on what stage of life you’re at, for example, a graduate, wanting a career change or re-entering work.

4. Duolingo
   

This is a fun way to learn a language, either through the website or by downloading the app for your phone and tablet, which is available on both Google Play (for Android phones) and the Apple Store (for iPhones).

To make the learning fun and interactive, Duolingo uses a questionnaire format with pictures. I spent five minutes on my first Spanish lesson and was quite entertained.

Its lessons are always free, but there is a paid option should you wish to access more content.

5. Skill Share
   

Skill Share is all about creativity – learning new skills and deepening passions. So if you’ve ever wanted to learn how to draw a deer skeleton with ink, your dream can come true!

It also offers courses in writing, animation, lifestyle and business, should an anaemic deer not be to your liking.

You can search for free courses, or view all courses (including paid ones) by category or using the search bar at the top of the website.

The first session of the paid-for courses is free, and you can sign up for a free 14-day trial to access the rest and all other classes.

All lessons are in video format and you can download the Skill Share app for Android and iPhone.

6. iDEA

Brush up on your digital skills with free courses from iDEA. Through the platform, you can learn anything from how social media works to coding.

In order to see the courses available, you do need to sign up for a free account. You can also earn badges as you work through a course to keep track of your achievements and progress.

7. Open Learn
   

Open Learn is the free service run by The Open University. I’ve signed up for MSE’s Academy of Money course, hoping to improve my knowledge of all things financial.

But there is so much more available, all broken down into eight categories, including ‘health, sports and psychology’ and ‘society, politics and law’.

All courses give you a Statement of Participation at the end to prove you have completed the course, and some come with ‘digital badges’ too, which offer additional proof of the commitment to the course.

If you’re stuck at any time, there is a huge FAQs section to help answer any query you might have.

8. Open Culture
   

Study university courses for free with Open Culture. All courses are in video or audio format and are designed to be downloaded to your computer for study.

There are so many courses to choose from, but I found the art of storytelling by Pixar particularly interesting as I love animated films. The courses are free, but if you would like a certificate at the end, there is a fee.

9. Coursemarks

Coursemarks have a giant master list of 4,881 open courses by top universities that is searchable by University and by Subject. The site gives each course a score. There are student ratings also for about half the courses.

Read the entire article.

SOURCE: https://disabilityhorizons.com

FREE online courses to up your skills and knowledge in 2021

Disability Horizons 01/01/2021 By Lucy Currier

Investigative drug approved

The Canadian charity CureSPG50 is pleased to announce that the U.S Food and Drug Administration (FDA) has awarded Rare Paediatric Disease Designation (RPDD) to Melpida an investigation treatment for SPG50.

CureSPG50 is developing Melpida, which seeks to slow the progression of the inherited neurodegenerative condition Spastic Paraplegia Type 50 also known as SPG50. SPG50 causes children affected by this terrible disease to become completely paralyzed with limited brain function.

“We are extremely pleased to have obtained Rare Paediatric Disease Designation (RPDD),” said Terry Pirovolakis, who along with his wife Georgia started CureSPG50 after their son Michael was diagnosed with the rare genetic disease as an infant.

The clinical study will compare Melpida’s effectiveness in pediatric children, to the natural progression of SPG50 as documented in previous groups of patients. CureSPG50 is still in talks to determine who will be the lead investigation center for the trial.

Read the full article.

SOURCE: https://www.curespg50.org/ 

CureSPG50 Receives FDA Rare Paediatric Disease Designation Status For The Treatment of SPG50

© 2020 By A Hard Working Dad

Planning & flexibility the secret

HSP community member Wil talks about travelling with disability to the ABC.

I didn’t do much overseas travel when I was younger — I focused on my career, buying a house, and then raising my family.

But a few years ago I came to a realisation: if I wanted to see the world, it was now or never.

My mobility was slowly (but surely) getting worse. So I set about planning how I was going to travel.

I learned having a disability doesn’t mean you can’t travel — you just need to plan more. A lot more!

A life-changing condition with no answers

I have an undiagnosed spinal cord problem.

Basically, I have idiopathic progressive spastic paraplegia, which means I’m slowly being paralysed from the legs up.

It was first noticed in 2000, but despite all the specialists and tests over the years, I’m no closer to a diagnosis or a cure.

I’m fortunate to still be able to mobilise to some degree on my crutches.

But I was forced to give up work in 2013 due to a slow recovery from some exploratory surgery and debilitating chronic pain.

Initially, my focus was to try and secure my financial future — I had not intended retiring at 51.

Then I started to future-proof my home, in case I’m forced permanently into a wheelchair.

Then came that now or never travel moment.

A trial run, and then another trial run

My initial practice run was a two-week trip to Perth in late 2016 with the family.

It all went well. People everywhere were extra helpful — more than I’d expected.

We saw a concert at the Perth Arena, went swimming with dolphins at Rockingham, hired a car and drove some 2,500km around the south west region of WA, exploring the beaches, forests and other attractions.

Another “trial run” was done the next year: my wife and I went to Cairns and Port Douglas. Again, we had no issues despite just my wife accompanying me.

I found many attractions catered for wheelchair users including the Kuranda Railway and the Skyway Rainforest Cableway.

We even went to the outer Barrier Reef on a large catamaran for a day of snorkeling and swimming.

Character-building challenges

Confident that my wife and I could handle an overseas trip, we decided a 13-week European trip was in order, with me doing the planning.

I used a travel agent for the critical phases like flights and cruises, which made up eight weeks of the trip.

The rest — accommodation, car hire, what to see — I did myself.

I take everything with me: a wheelchair, electric drive, free wheels, spare parts, loads of medication.

There was the occasional “challenge”.

Finding accessible accommodation is tricky, and something as simple as booking a hotel room can be a long process.

Even with lots of research, you don’t always get it right.

For example, the online photos for an Airbnb in Lichtenstein didn’t show the house was perched on the side of a mountain with an external spiral staircase down to the living area and the bedrooms on the bottom level.

Fantastic views though — and lots of exercise for my shoulders.

There was no ramp to board the fast train from Venice to Milan … but an improvised fork lift did the job just as good.

Some of the other character-building incidents had nothing to do with my disability — blowing a tyre in rural Italy; getting most of our luggage stolen in France.

Being on strong medication for my chronic pain was another “challenge” to overcome.

I had to take 13 weeks’ supply with me, plus some spare, just in case.

Some countries have strict laws in place for drug control, even prescription drugs, so I had to do my homework well in advance.

Enjoying the ride

Alaska and Canada was our next choice in 2019, and again we did a lot of cruising (it was, after all, before COVID-19).

This time the “challenges” were considerably less — now we were “experienced” world travellers!

My highlight was a helicopter flight and then dog sledding on a glacier in Juneau — a once-in-a-lifetime experience made even more memorable as my whole family was with me.

We also toured through Denali National Park and saw several bears, moose and other deer. We had a Dungeness crab feast in Ketchikan, swam with rays and sharks at Bora Bora, snorkelled the reefs in American Samoa, and spent four weeks driving through British Columbia.

Overall, holidays on cruise ships have been the most relaxing and the easiest for me, as:

• Most of the ship is accessible, and you don’t have to leave for entertainment
• You travel to various ports without having to pack and unpack, or carry luggage
• Shore tours are rated for accessibility and most cater for people with disabilities
• There’s an on-board medical doctor and staff — a big plus if things go wrong

Now COVID has basically killed the cruising industry for 2020 and probably much of 2021, I believe there will be a real pent-up demand for cruising holidays.

Though I believe the ships will have strict safety guidelines in place, I’d be nervous going on a cruise for a few more years yet, until there was a proven track record of limited or no infections.

Chances are that I’d initially return to cruising on Australian based cruises like around the Kimberley in WA or a round-Australia trip. Overseas travel can wait for a bit longer.

Despite a few hurdles, which every traveller comes across in one form or another, travelling with a disability is very much a do-able activity.

Across the 31 countries I’ve visited, and the 100,000 kilometres I’ve travelled so far, the vast majority of people were helpful.

Whilst travel in developing countries is generally more difficult due to the lack of infrastructure and facilities, it’s exciting, eye-opening and manageable — with a bit of planning, perseverance and plain muscle power.

You just need to roll with the unexpected and enjoy the ride.

Read the entire article.

SOURCE: ABC Radio National

Travelling with a disability can be fantastic, it just needs a lot more planning

Wil W for Life Matters

Posted Mon 28 Dec 2020 at 3:00pm, updated Mon 28 Dec 2020 at 10:37pm.