HSP Research Foundation

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.

25/06/2025

Community member, Ken, provided the following in response to his actions in Living with HSP.

"I am not a person to share my personal details on Social Media. However, I felt that I wanted to share some of my experiences with HSP on the basis of hopefully providing something that may help someone in coping with this rare disease; some 2,000 people in Australia and roughly 600,000 worldwide.

I regard myself as lucky as I still have reasonable mobility - not sure why but I have had HSP all my life, without knowing what it was until some 20 years ago.

So what do I do to maintain my physical and mental condition? I have played tennis since I was 7 and 62 years later still playing although a bit slower. Has this helped me? I believe very strongly yes.

This week starting last Thursday:

Thursday - Mowed and whipper snipped reasonably sized yard for son and family moving into new house. Completed 170 pushups for the Push Up challenge. Covered 28,500 steps.

Friday - Completed 210 push ups. Walked the dog for 3kms and finished just short of 10,000 steps for the day. Another tennis day (1 hour) normally but partner not available today.

Saturday - Completed 210 push ups. Walked the dog for 2kms. A rest day with only 5,500 steps.

Sunday - rest day for pushups but assisted son with moving furniture and finished day just short of 9,000 steps.

Monday - 30 minute gym session with Personal Trainer (weekly event), followed by 20 minutes on the Cross Trainer, covered 12,000 steps and completed 220 push ups. Babysitting 11 month old grandson.

Tuesday - Walked the dog 3 kms, weekly gym session for 45 minutes followed by recovery coffee, completed 170 pushups, covered 13,400 steps, finished with 45 minute boxing session (good for both physical and mental (having to remember the 5 boxing routines) well being followed by recovery glass of wine. Normally would play 2 hours of tennis but opponent not available this week.

Wednesday - 1 hour of tennis, followed by recovery coffee, covered 15,000 steps and completed 230 push ups and babysitting again. 30 minute circuit gym session with Personal Trainer including rowing, dead lift, slam ball, squats, dumbbell curls, farmers walk followed by recovery glass of wine.

My message here is to find what works for you - if not sure definitely see a physio, preferably a neuro physio. Find what you can do and what will help - I am mindful of doing upper body exercises in the event I lose my ability to walk/run. I remember my dad who died without knowing that he had HSP and how quickly he lost mobility when he stopped exercising - this is my motivation!
Forgive me for the length - I am only hoping that someone is encouraged to take action or motivated to keep doing what they are doing as I believe it has helped me. Taking the dog for a walk is not only physically beneficial and challenging but also helps me clear my mind and find that positive approach - I wonder why am I doing it but when I finish........"

21/06/2025

The USA based Spastic Paraplegia Foundation, Inc., (SPF) is conducting a survey to collect valuable information about living with Hereditary Spastic Paraplegia (HSP) or Primary Lateral Sclerosis (PLS) from individuals and families directly affected by these chronic rare diseases. Your response is your patient-voice telling others about your challenges and the knowledge of your lived-experience that you face every day. Collectively we will build a clear and strong message for pharmaceutical stakeholder engagement, key opinion leaders, and more effective research teams.

The insights gathered from this survey will play a crucial role in shaping future conversations for interventions and therapeutics, starting with discussions at the 2025 SPF Annual Conference in Washington DC. The collective results will be available to everyone, including those capable of developing medical discoveries and researching treatments and therapies to improve the quality of our lives. These may include representatives from NIH (National Institutes of Health), FDA (Food and Drug Administration), C-PATH (Critical Path Institute) and others. By sharing your perspectives and lived experiences, you are helping to ensure that patient-voices are heard and considered in future research, development of treatments, and policy decisions.

We are told the survey should take 25 minutes of your time. Please click on the link below to begin. The Survey Deadline is July 20, 2025.

19/06/2025

A focus for the Foundation is the 'Living with HSP' perspective and we have asked community members over time to share their experiences. Community member Jess recently shared her experience with Yoga which is an activity covered in various articles on our website.

“As someone living with a rare upper motor neuron disease — Hereditary Spastic Paraplegia, I’ve always wanted to try yoga, but I was hesitant for years. I use a wheelchair, and I often felt nervous about joining a typical class where I might not be able to keep up or do the same poses as everyone else. It felt like yoga just wasn’t made for someone like me.

That changed when I found Lisa at Personal Harmony Yoga, who recently became a certified yoga instructor, started offering chair and wheelchair-accessible yoga, as well as restorative yoga. Her classes have truly changed my life — both physically and mentally.

Since joining her wheelchair yoga sessions, I’ve noticed a huge difference. Physically, I feel more relaxed and less tense after every class. The stretching helps relieve the tight, sore muscles I deal with daily, and mentally, it’s been a big boost too. My mood is lighter, my stress levels are down, and I feel more connected to myself and my body. That mental uplift often has a knock-on effect, helping my physical symptoms feel more manageable.

Lisa is incredible — kind, understanding, and genuinely passionate about making yoga accessible for everyone. When I recently joined one of her restorative yoga sessions, there were a couple of poses I couldn’t physically do. Without missing a beat, she helped me find alternate positions that gave me the same benefits, tailored to my body’s needs. I never felt left out or like I was slowing down the class — it was inclusive and supportive from start to finish."

Thank you Jess for sharing.

12/06/2025

June 2025 Campaign - $10,000 Matching Offer Available - Give Today!
What you give will be doubled thanks to a member who has offered to match donations up to $10,000 from today. Please don't miss out on this opportunity as we continue to monitor and review potential support for HSP research undertakings with the expert guidance of our globally represented Scientific Advisory Board. We need to have the funds available when the opportunity arises.

What you give truly makes a difference
Give a gift to everyone who lives with HSP ... to the more than half-a-million people with HSP worldwide ... to your kids, grandkids, yourself, your friend or loved one with HSP.

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Help fund research to find cures for the HSPs ... create a brighter future for all!

3 ways to give

Transfer online from your bank account, or use credit card, or PayPal

EFT
Electronic funds transfer (EFT) online from your bank or credit union.
Account name: HSP Research Foundation Inc
Bank: nab
BSB number: 082 294
Account number: 39 853 8301
Description: enter your name
Email the confirmation to admin@hspersunite.org.au and we will email you a tax receipt.

Credit Card
Click this link - https://www.givenow.com.au/hspresearch - to give by credit card. Online giving is kindly provided through the GiveNow service of OurCommunity. You will be emailed a tax receipt. You can also set up to give regularly.

PayPal
For speed and convenience, nothing beats PayPal. You don't even need an account. Click on the following link -
https://www.paypal.com/donate/?cmd=_s-xclick&hosted_button_id=H45XRUZ9ZTKTU&ssrt=1718505080757

Kind Regards
Ken

Ken Price
President
HSP Research Foundation

07/06/2025

Managed to get to Perth to join the HSP gathering in Midland at The Principal Bar & Restaurant. A great group of people sharing their experiences over lunch. A big thank you to the organiser and attendees.

31/05/2025

Was able to join a gathering at the Bravo restaurant at Chermside in Brisbane for lunch today and to share experiences with others with HSP and their family members. Well done to the organisers and thank you for the invite.