My Journey With Complex Hereditary Spastic Paraplegia

My Journey With Complex Hereditary Spastic Paraplegia This is my journey with C-HSP, from diagnosis in 2023 and the progression of it, I will give more insight for everyone of my life.

This page will also cover all charity golf days and events as well as the BackaBuddy links. Welcome to my journey with C-HSP

03/09/2026

This one covers the admission to hospital and my experience with the first doctor and one of the physio's.

The doctor did not believe certain things I told him and the physio was a bit unsure what to do, so she resorted to telling me it's a trauma response and she is going to get the owner of the physio practice to come and see me.

I was in so much pain at that point and for them to tell me it's a trauma response had me fuming.

I'll cover more about the hospital stay in the next video(s). I did know I said in the video it will all be covered in the next one, but I think it might be two.

Please like and share the video and if you want to contribute to the fundraising for the genetic test, please follow the BackaBuddy link:

https://www.backabuddy.co.za/campaign/genetic-testing-for-corn

I'm so close to getting the genetic tests done. Please share my BackaBuddy fundraiser to help me, and my family, to get ...
31/08/2026

I'm so close to getting the genetic tests done. Please share my BackaBuddy fundraiser to help me, and my family, to get the tests done.
If this test is done and we can get the kids tested as well, like our eldest who is currently diagnosed with CP Spastic Diaplegia, it can benefit him so much! I've read again today about kids being misdiagnosed with CP and then they have HSP! It will help him get medication for his stiff legs.
Our youngest is currently in hospital for chronic constipation. This has been going on for almost 2 years now. The doctor is going to go through the method of elemination to see what is the cause. She is well aware if my condition.

Your help will be highly valued!

As most of you know, I have been diagnosed with Hereditary Spastic Paraplegia in 2023. The diagnosis changed to Complex Hereditary Spastic Parapleg...

29/08/2026

As promised, the second video of the week.

This video covers the last symptoms I experienced before finally being admitted to hospital. It covers constipations, urinations problems, weight loss and some more.

The video is a bit longer as usual as I wanted to finish with the symptoms part and I did not really sleep last night. I woke up early morning with a lot of pain and went in and out of sleep until about 7 this morning, still waking up with immense pain. It was a struggle getting out of bed today.

Please share and like the video. If you have any thoughts or questions, please don't hesitate to comment on the video's I make.

Also, please find herewith the BacaBuddy link:
https://www.backabuddy.co.za/campaign/genetic-testing-for-corn

Thank you for taking the time to watch my videos and experience My Journey With Complex Hereditary Spastic Paraplegia.

26/08/2026

Sorry for posting a week late.

Last week was a bit heavy on me. Emotional, painful and I had a bunch of spasms to deal with, especially in the mornings. So things where a bit hectic and I was exhausted most of the time.

This video covers, in short, the pain I experienced before my hospital visit. It felt like time went by so slow as I just wished to get admitted and get the pain relieve that I desperately needed. Not one of the best periods in my journey.

Thank you for taking time to watch my video.

Herewith the BackaBuddy link again:
https://www.backabuddy.co.za/campaign/genetic-testing-for-corn

We are still just over halfway for my tests to be done. Please share the link, share the post and if you can, help me get this test done.

Here is a AI overview of pain in Complex HSP:
https://share.google/aimode/DHnQ8vD5WLWBTSAJ3

SPF Announces 2026 HSP/PLS Awareness Week: Six Days of Research, Connection, Action & HOPE! **August 23–28, 2026**Patien...
12/08/2026

SPF Announces 2026 HSP/PLS Awareness Week: Six Days of Research, Connection, Action & HOPE! **August 23–28, 2026**
Patients, families, researchers and clinicians from around the world will come together August 23–28 to learn, connect and move HSP/PLS research forward.

Register in advance for AWARENESS WEEK on SP-Foundation.org
After registering, you will receive a confirmation email containing information about joining the meeting.

Here's the schedule!!
►August 23, 2026 at 2:00PM CT | POTATO PANTS —TAKE THE CHALLENGE! w/ Lori Renna Linton & Jeff Feen

►August 24, 2026 at 8:00AM CT | SP-CERN'S JOURNEY TOWARD TREATMENTS w/ Dr Marie Davis at University of Washington Medical School

►August 24, 2026 at 6:30 PM CT | SPECIAL SPF VIRTUAL RECEPTION
for Dr. Oscar Liang Qiang at Drexel (please see New Zoom Link below *)

►August 25, 2026 at 10:00 AM CT | PERK, AGING, STRESS & NEURODEGENERATION w/ Dr Vivek Pandey at University of Kentucky College of Medicine

►August 26, 2026 at 2:00 PM CT | NEUROSTIMULATION w/ Dr Rahul Sachdeva at University of Kentucky College of Medicine

►August 27, 2026 at 6:30 PM CT | FUNNERY EVENTS & OPEN FORUM

►August 28, 2026 at 12:30 PM CT | NU-9: PROTECTING UPPER MOTOR NEURONS w/ Drs. Mukesh Gautam, Peter Baas, Hande Ozdliner

Get ready for an exciting week of science, stories, community, connection—and HOPE!

The Spastic Paraplegia Foundation (SPF) is proud to announce 2026 HSP/PLS Awareness Week, taking place August 23–28, 2026. For six special days, patients, families, researchers, clinicians, healthcare professionals, advocates, and friends from around the world will come together with one shared purpose: to shine a brighter spotlight on Hereditary Spastic Paraplegia (HSP) and Primary Lateral Sclerosis (PLS) and keep moving the pathway toward treatments forward.

HSP/PLS are progressive rare neurological disorders that affect mobility, independence, and quality of life for thousands of individuals and families worldwide. Every diagnosis and every journey may be different, but one powerful thread connects this community:

We want answers. We want progress. And we want treatments.

SPF TALKS so You can Join the Movement!

Throughout Awareness Week, SPF will open its virtual doors for a special series of SPF TALKS—bringing the experts, the science, and the conversation directly to patients and families.

Featured programs will include internationally recognized researchers, physicians, patient advocates, and members of the HSP/PLS community sharing what's happening right now across research, clinical studies, emerging science, patient participation, and the search for meaningful treatments.

And we're going to have some fun along the way!
Awareness Week isn't only about science. It's about people.
It's about the patients who keep moving forward.
The caregivers and families who walk beside them.
The researchers who keep asking the next question.
The volunteers and supporters who turn ideas into action.
And the worldwide HSP/PLS community that continues to prove we are stronger when we work together.

"This is more than an awareness campaign," said Norma Pruitt, Executive Director of the Spastic Paraplegia Foundation. "Awareness is the first step—but action is what changes lives. Every patient story shared, every researcher supported, every family connected, and every partnership formed moves us closer to the treatments our community is waiting for."

Six Days. One Community. Lots to Talk About!

*****************************************************************

*JOIN US FOR A SPECIAL SPF VIRTUAL RECEPTION!
Celebrating Dr. Oscar Liang Qiang
Monday, August 24, 2026
6:30 PM Central Time
LIVE on Zoom, JOIN Us - Register on SP-Foundation.org

During SPF HSP/PLS Awareness Week, we're taking a special moment to celebrate someone who has helped move our understanding of HSP—and the search for future treatments—forward.

Please join the Spastic Paraplegia Foundation for a Virtual Reception honoring Dr. Oscar Liang Qiang as we thank him for his dedication, research, collaboration, and contributions to the HSP and PLS community—and wish him tremendous success as he begins an exciting new chapter in his career!

His work studying SPG4, corticospinal motor neurons, disease modeling, and HDAC6-targetable pathology has helped researchers better understand what may be going wrong inside the very neurons affected by HSP—and where future treatment opportunities may exist.

But this evening isn't a scientific lecture.
It's a CELEBRATION!
Come say hello.
Share your appreciation.
Wish Oscar well.
And help us recognize a researcher who has dedicated his talents to moving HSP science forward.
Patients, families, researchers, colleagues and friends—everyone is welcome!
Research moves forward because people choose to pursue the difficult questions.
Oscar, thank you for asking those questions—and for giving our community more reasons to HOPE.
We hope you'll join us to send him off SPF-style!

12/08/2026

I woke up this morning with terrible spasms and it was extremely difficult getting out of bed. But nether the less, I had to get up to get our son ready for school and also get myself ready to go and drop him off.
I used to do it before all this began, and Suné is not yet completely feeling better, so it is a good thing for me to be able to take him to school again as I missed doing it, even though it is extremely difficult.

So this video will cover the spasms I experienced before going to hospital. As I said in my previous video, I'll be covering the symptoms I had before going to hospital and then I'll start with the hospital experience etc.

It is difficult to explain in full the feeling of the spasms. It can sometimes last for a few minutes and on other days it will keep on going for more than half an hour.
The spasms I had this morning woke me up at around 05:15 and it lasted until around 06:00. I feel completely drained today and still in pain.

Thanks again for taking time to watch my videos, even though they are long. It is difficult to explain health conditions in short videos.

Also, please like and share the videos. It is not only for me, but also for awareness of HSP. This is such a rare disease that no one talks about, never mind even know about. Everyday is hard and everyday my body fights to just get through the day. It is the same for most people with HSP.

Please find herewith the link to the BackaBuddy:
https://www.backabuddy.co.za/cam.../genetic-testing-for-corn

Also, it is hard to find a specific medical site that talks about spasms and HSP, but here is a little breakdown from Google AI:
https://share.google/aimode/smqr5bdWE4rkuXpiS

06/08/2026

Sorry for the late post. I wanted to make a post on Tuesday, but everyone in the house is sick except for me. So things are a bit hectic at the moment.

In this video, in short, I talk about the symptoms I had before being admitted to hospital and what it kind of felt like. Where my mind was at and the thoughts that raced through my mind. This is all summed up in a few sentences, so the complete feeling will be a bit hard to grasp. I will eventually start going over to platforms like YouTube where the video's will be longer with more in detail descriptions of what it felt like.

The next few videos I will focus on the symptoms I had, individually, to give you a better idea of what it was like. So the video's will be a bit shorter again. Some symptoms where more intense than others, so that might need a bit more time to explain.

Thanks for watching, and please like and share my story. I would highly appreciate it.

If you would like to donate to the genetic test fundraiser, please follow the BackaBuddy link. We are almost to the R8000 that I need to get tested. the remaining R4000 will be to get the kids tested.

Link to BackaBuddy:
https://www.backabuddy.co.za/campaign/genetic-testing-for-corn

Link to what clonus is:
https://my.clevelandclinic.org/health/symptoms/24822-clonus

28/07/2026



First of all, I want to say thank you to everyone that takes time to watch my videos. Secondly, thank you to the anonymous person that made a very generous donation to the BackaBuddy for the genetic testing.
We are now just over half way to get the testing done! I'm so excited, but also nervous.

This video covers the starting symptoms in Bloemfontein and also the first visit to our GP. We as a family had Covid like symptoms, but she noticed something else when she went back on my blood test results. I'm not sure how far back she went, but she noticed something odd in my results and decided that she wanted to admit me to hospital to get tests done for MS, ALS, Parkinson's and Chronic Q-Fever. I had Q-fever when I was 17 years old, also a very rare bacterial infection that almost took my life, and it reoccurred for 4 years. More details regarding the results will of these tests will be shared in up coming videos.

Please follow the link to my BackaBuddy page if you would like to make a donation towards the genetic test that needs to be done. This is not only for me, but also for both my kids (this was covered in the first video I made).

Also, please like, share and follow my page for more info on C-HSP and if you would like to ask a question, please leave a comment on my videos and I will gladly answer them.

https://www.backabuddy.co.za/campaign/genetic-testing-for-corn

22/07/2026

Good morning

I promise, this time the video is shorter (just over 5 minutes) and I will try and keep the videos in this time frame. If there are more things that I need to add, the video will be longer and I will give everyone a heads up in the post 😅

So this video covers the beginning of the symptoms, which at that point I did not even consider to be the starting symptoms of C-HSP, or anything for that matter. The first symptoms started 2 years before I was officially diagnosed.

Please have a listen, give the video a like and a share. I would highly appreciate that!

Also, I have two links today:
The first one provides some info on HSP from Cleveland Clinic's website and mostly covers HSP and not C-HSP. This is limited information.
https://my.clevelandclinic.org/health/diseases/hereditary-spastic-paraplegia

The second link is the BackaBuddy link for the genetic testing. This one, for me, is the important one as this test needs to be done as soon as possible.
https://www.backabuddy.co.za/campaign/genetic-testing-for-corn

Thanks for watching, sharing and taking some time out of your day to experience my journey with Complex HSP!

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