HSP Research Foundation

28/08/2025

On our theme of Living with HSP, we came across the article on financial scams relating to cognitive decline, which can be an issue for some HSP types but regardless, the article relates to real life experiences where money is lost through scams which in Australia, reported scams in 2024 totalled $2B.

What can be done to avoid scams?

This week in Australia is Scam Awareness Week and Scamwatch, an Australian Government body, has a 3 step approach, Stop. Check. Protect. From the Scamwatch site:

'Scams are everywhere, targeting people from all walks of life and costing Australians billions of dollars each year. Whether it’s fake emails, unexpected phone calls or online schemes, scammers always find new ways to gain your trust and steal your money or personal information. But 3 simple steps can help keep us all safe from scammers.

STOP.
Don’t give money or your information to anyone if unsure.
Scammers will pretend to be from organisations you know and trust like businesses, the police, your bank or government services. They will offer to help you or ask you to verify your identity with them.

CHECK.
Ask yourself if the message or call is fake.
Never click a link in a message. Only contact businesses or government using contact information that you find yourself from their official website or app. If you’re not sure, say ‘no’, hang up or delete.

PROTECT.
Act quickly if something feels wrong.
Contact your bank if you notice unusual activity or if a scammer gets your money or information. Seek help and report the scam to Scamwatch. When you report scams, you help us stop the scam and warn others.'

If unsure about something, don't hesitate to check with family, friends, or carers.

My background is in accounting, finance and audit and I am well aware of the need to protect myself and the Foundation from potential scams. Some additional thoughts from material I have read -

• Say no, hang up, or delete suspicious messages.
• Take time to think before responding to unexpected requests.
• Don’t let anyone pressure you into immediate action.
• Trust your instincts if something feels wrong.

Make sure the person or organisation you’re dealing with is real.
• Contact the organisation directly using details you find on their official website or app. Do not use contact details provided to you by the sender or caller.
• Look for extra letters, symbols or numbers in the web address for signs of a fake website.

In emails, check the actual address the email has come from. The sender details might seem genuine eg 'Meta Security' but when you hover over the sender name, the underlying email address will appear - eg 'damin_martinxx_999@SomethingNotReal.christmas'

Please be careful.



https://www.scamwatch.gov.au/research-and-resources/scams-awareness-week-2025

https://www.brainandlife.org/articles/cognitive-decline-financial-struggles-scams-look-for?utm_medium=email&utm_content=377607633&utm_source=hs_email

As people age, cognitive changes can raise their risk of money problems, including falling for scams. Learning what to look for can help keep their finances safe.

27/08/2025

For our members in and around Brisbane.

The Brisbane Disability Expo will link thousands of people with a disability with hundreds of product and service providers as well as a range of informative and interactive presentations delivered by industry experts.

22/08/2025

Well done Grogu (aka Arlo)

17/08/2025

I have read some stories of people with HSP coming home from hospital and I thought this article might be of interest. I know myself, if I am immobilised for a period, balance and walking are more difficult.

Many patients lose strength, mobility, and stamina during a hospital stay. To help them get back in shape—or make the most of rehabilitation—after being discharged, caregivers should consider these recommendations.

09/08/2025

A community member provided the following in response to his actions in Living with HSP.

“I want to start up by saying I don’t see HSP as a disease or a disability but as a condition that I was born with, and it is just part of my life. When you label something as a disease or disability it automatically has a negative connotation attached to it and people start to feel sorry for you or treat you differently. There are enough sections of society these days seeking the victim-mentality and I for one do not want to be one of those people. I am lucky in that I have good mobility, however, the HSP is obviously there because I know my gait is not as good as it should be and the constant questions of ‘What did you do to your leg?’ (that I am sure we all get) is a common part of my day.

But like any condition, you can either use it as an excuse to avoid things or you can look at the positives and adapt your lifestyle to still live it to the fullest. When I was in my teens and 20s I used to enjoy long distance running and cross country running and the HSP didn’t seem to have any affect on that at all. I managed to complete both the Gold Coast half-marathon and marathon several times over the years and was an active runner with my dogs. I used to play a lot of cricket and tennis growing up and movement around the court was never an issue.

As I approach 40, the mobility isn’t as good as it was and it is a bit more of a struggle to run the long distances, so instead I got more into bushwalking. My two kids and I love camping, and they too love the bushwalking, so we head off camping 5 or 6 times a year to somewhere with bushwalking tracks available – some short and some quite long. There are spots along the tracks I need to take extra care to not trip but the HSP does not prevent me from enjoying it.

In 2024, I went over and completed the Kokoda Track in PNG and had no issues, went fast up the hills and a steady pace on the declines. I recall walking in for dinner the first night at the hotel and others on the trek, who had obviously seen my gait, asked me if I was going to have any issues completing it. The first night at camp on the track no one was questioning my ability. One of the hikers asked me about my legs and I explained to them that I have HSP, and they congratulated me on this amazing achievement and how great it is I could do the track. This made me feel a bit weird that they thought me completing it was a greater achievement than anyone else in the group. My reply was simply that I have excellent fitness, I am a very active person and there is nothing wrong with me, I just happen to walk differently to others. When Kurt Fearnley crawls the entire 96km track in 10 days surely walking it with a slight limp is nowhere near as impressive.

I have since done other multi-day hikes, play touch football weekly and still work as an operational police officer and auxiliary firefighter with nothing preventing me from continuing this. I am a regular at the gym doing strength training to keep both my upper body and lower body strong.

I know that over time the HSP will worsen and there may be a time I require mobility aides or a wheelchair and if that time ever comes then I will adapt my life and get involved in something that I can enjoy and continue to live my life to the fullest. There is always someone doing it tougher and harder than me. I have life, fitness, supporting friends and family, a career, and the ability to still enjoy life. The best way for me to live with HSP is to keep enjoying what I am doing and along the way just adapt where I can to keep enjoying what I am doing."

03/08/2025

Community member, Tracy, has informed us that her daughter, Indi, is participating in the GC50 Run Festival on the Gold Coast in October and Indi has set up a fundraising page with the Foundation as the nominated charity. Thank you Indi.

10 years ago my mum was diagnosed with HSP, which is a neurological condition that affects the muscles in her legs. She is now, almost always, confined to a wheelchair. Mum having lost the privilege to walk, let alone run, is what has inspired my running journey. Her story is a daily reminder to mov...

27/07/2025

Thank you for sharing Lucy's story. 🙏

6-year-old Lucy lives with a rare disease called Hereditary Spastic Paraplegia (HSP), a group of inherited neurodegenerative disorders that causes progressive stiffness and weakness in the legs, affecting her ability to walk.

After a difficult birth and ruling out cerebral palsy, Lucy was diagnosed with HSP as a baby. Since then, she has also been diagnosed with epilepsy and cystinuria.

“HSP is degenerative, so we’re unsure what the future holds for Lucy and her mobility. It's hard watching Lucy with her peers when they’re jumping and climbing, as she desperately wants to keep up. People don't understand how fatigue affects her,” says Cecilia, Lucy’s Mum.

“It's hard to connect with other parents as the disease is so rare, and that can bring an immense feeling of loneliness. Many conditions have support organisations, but rare diseases don’t.”

Lucy continues to visit the Women’s and Children’s Hospital (WCH) and sees our neurology, nephrology, rehabilitation, and orthotics departments.

“Lucy loves seeing Dr Nick Smith – he always makes her laugh and calls her Lucy Lolly Legs!”

Despite her challenges, Lucy is full of life and is always trying to make others laugh. She loves swimming, being silly with her siblings and cousins, and has just learnt to pedal a bike!

“She is incredibly brave and quite the daredevil which scares everyone!”

A big thank you to Lucy and Cecilia for sharing your story 💗

25/07/2025

In reviewing articles with a focus on living with HSP, we came across this article on Caregiver Burnout. While there is a focus on family caregivers, we wanted to share this article for overall awareness. In recent discussions, community members have shared examples of things they do for their caregiver (a way of saying thank you to family or outside provider). The health and wellbeing of the caregiver is very important for themselves as well as to ensure they can provide the care required.

Caregiver burnout can feel overwhelming and difficult to contain. Learn how to recognize the signs and discover healthy ways to regain control and rekindle your energy.

19/07/2025

Continuing the Living with HSP theme, our Australian readers would be interested in the following link to the Disability Gateway. We note that the Disability Gateway has launched a Supported Decision Making hub with tools designed to help you take charge of your choices in everyday life. It includes resources on health, housing, relationships, money and more. We note there is a section on information to assist NDIS participants make decisions.

https://www.disabilitygateway.gov.au/

Feedback or comments are welcomed.

Information and services to help people with disability, their family, friends and carers, to find the support they need in Australia

14/07/2025

With our current theme of identifying what members are doing living with HSP, we have been reviewing articles that we believe are relevant to people with HSP. The attached article - 'How to Reduce the Risk of Falling' - is certainly relevant and we hope that there are some things covered that will help with your daily activities.

Reduce the risk of falling by addressing physical health, medications, footwear, and home safety, with expert advice on exercise, vision and hearing assessments, and assistive devices.

10/07/2025

Community Member, Ted, was recently asked to share his experiences Living with HSP.

“Some thoughts on living with HSP and ways to manage and accept the changes.
 Understand that HSP is degenerative and that symptoms will progress
 Exercise and movement will help keep you mobile
 Familiarise yourself with how HSP may impact you over time
 Be aware that HSP will affect people in different ways and differing degrees
 Explore various exercise methods to see which works best for you, such as:
o Pilates
o Yoga
o Personal Trainers
o Stretching
o Gym membership
o Walking etc

The symptoms can be quite different from person to person but these are some things that may help deal with the condition.
 Do not despair. Although HSP will progress and possibly limit your mobility/ability to do some things, you are still the same person you have always been.
 Many people will be alarmed when they learn that you have a neurological condition, and their reactions can have an impact on you. Their reactions may be ill-informed, irrelevant, and not very helpful.
 Learning you have HSP can be a shock and can impact how you see yourself.
o Close friends and family will be surprised, shocked, but probably will accommodate the changes and support you.
o You will get questions from people as your symptoms become more noticeable.
o Understanding that things will change for you but to what degree may not be evident.
o Remaining aware that some with HSP will show very minor symptoms while others will display significant impacts.

 HSP is a neurological condition. You will need to make some changes, the other things that you do may still be done but may require some modification.
 Talk with other people, understand how you are feeling, allow others to know your feelings and thoughts.
 Choose the people that you can listen to but remember that most will have very little to offer unless they too have HSP.
 General Practitioners may know of HSP and are invaluable for prescriptions and referrals.
 Despite having HSP, you are a valued member of your family and friends including employers who benefit from your experiences and achievements. As things progress, hopefully you will find these people will help you to deal with the changes by being there with you, modifying your surroundings to make things more manageable for you.
 The symptoms of HSP may include pain and/or cramps, which will need to be addressed. Exercise helps with this but medication may also be necessary. These symptoms will need to be explored with a neurologist or pain management specialist.
Lastly, your understanding and acceptance of HSP, knowing that the condition is a part of you but does not define you, is important for your peace of mind and how you see yourself.
Some things to consider:
 If you are under 65, register/apply for NDIS. The access to funds will help you over time.
 Investigate and learn about technology and aids which may be needed over time:
o Mobility aids such as:
 Walking sticks
 Orthotics
 Walking frames
 Wheelchairs
 Vehicle modifications to assist with access, continued driving etc
o Home assistance as needed

The people around you and who you associate with may need to understand that you have HSP and how they may be able to work with you and assist/support you. Sadly, you may find that some are not comfortable dealing with you for whatever reason and you may need to distance yourself from them to maintain your own
wellbeing.
I do not profess to have covered all bases here but thought I should share my thoughts and perceptions to help people understand they may not be alone with what they are going through. No doubt others will have their experiences from living
with HSP and I would be happy to encourage others to share their experiences to enhance the community learning process.”

04/07/2025

For our Australian members on the NDIS, the following appears to cover the pricing changes which came into effect 1 July 2025.