My Journey With Complex Hereditary Spastic Paraplegia

26/10/2026

Last week was a really difficult week for me. I suffered from heavy spasms in my stomach and intestines, which might or might not be HSP related, and I just didn't feel up to it to make a video. I also had to make arrangements for the blood test that had to be done for the Invitae Genetic Test, so things where just a bit hectic given the amount of energy that I have available per day.

In this video I continue covering the emotional part of what a weird and wonderful, as my GP calls is, diagnosis bring into your life. It really changes everything, from your relationship with yourself to others like your spouse, friends and family members. It slowly showed me the true feelings of certain people in my life, what they really thought of me and in the end, what they have been subliminally trying to do for such a long time. It was scary to basically sit on the sideline and watch things unfold, things that I knew but never said out loud to the world.

The other part was the emotional toll it took on me. I was in a state of mind where I felt lost and I also grieved what I used to have, grieved what I lost in terms of what I was always able to do (this is shortly covered near the end of the video).

In the end, I felt alone and lost. There was, and still is, absolutely no guidance or handbook on how to handle something like this. How to handle the emotions, the deterioration of my relationship with my wife and the absolute loneliness that came with this.

It was a really difficult time to be alive.

24/10/2026

First step to get the genetic test done!

Finally went to PathCare yesterday to get my blood samples taken. It will now be sent to Cape Town in order for them to check the quality of the samples and then it's going to Invitae in USA. Initially I thought it was going to the UK, but it seems like it's going to the US.

Now it's just for the long wait to get the results back.

Thanks to everyone that helped to get this done!

15/10/2026

With a chronic illness diagnosis, comes a lot of emotions and hardship.

Being diagnosed with HSP (at that point it was still just HSP), was at first like being diagnosed with something that will go away after a while. But when the realization kicked in that this is permanent and progressive it was hard to deal with. It was hard losing the abilities that I use to have. It was hard seeing my wife doing things that I use to do. It was hard when I fell down, or when my legs didn't want to work as I wanted them to work, to ask for help. It was emotionally taking a toll on me that I tried to hide.

This covers exactly just that, hiding your emotions when you actually want to cry and scream from frustration. This is something that is not talked about enough. The actual emotional toll it takes on yourself and on your spouse/partner. The frustration that comes out in the wrong ways, the anger, the sadness and the grief of losing something that you once had.
This was something that was happening between me and my wife, where communication was not always done correctly and the frustration, that we both had, became a method of communicating with one another.

13/10/2026

In this video I cover the emotional toll that being diagnosed with HSP took on me and my wife.

It was still a fresh diagnosis and so hard to comprehend what was going on. All of a sudden my wife had to become the main breadwinner for our home, while she had her own health issues. We did manage to keep our heads above water, but only barely.

This started causing a lot of strain on our relationship. We just lived together to keep try and keep things from not falling apart. Emotionally, financially and to keep the try and re-assure the kids that everything will be fine. The problem was that I started withdrawing emotionally from our household and started focusing on my own mental health. It was so difficult and I felt a deep shame inside of me that I had to put this burden on my wife.
My wife was working half day and, for most of the remaining time, baked cakes and cupcakes to keep us afloat. She was heading towards a burn out and so was I.

The sad part is that there where people pouring massive amount of fuel unto this fire, trying to force the situation into something that they can gain. People did not just only miss the physical struggles that I was going through, but they also abused the emotional struggles me and my wife went through.

This was leading towards what could've been a disaster.

13/10/2026

I want to thank everyone that contributed to the BackaBuddy for the Genetic Testing. The first goal of R8000 has been reached and exceeded!

Thank you so much to the people who contributed and made this possible! I will keep everyone posted on the process.

Thank you from the deepest parts of my heart!

11/10/2026

08/10/2026

08/10/2026

When I start to cover the real hardships of dealing with C-HSP and the other challenges that comes with it, it becomes difficult.
Here I start touching the effect on relationships, everyday life that I need to deal with and the small amount of support that I mostly got from strangers on HSP groups.

This was the point where things got real. Where acceptance become hard, not only for me, but for my wife as well. Dealing with a complete shift in dynamics was, and still is, hard. This ripped everything I once knew, and also the idea of how I thought it will be handled, into pieces. It made every decision, every move and every thought so difficult. Just as I thought that we will find a floating raft to help as stay afloat, it become more of a bunch of weights being tied to your feet and it's constantly pulling you under, trying to drown everything that you once knew.

It was also scary to see how the fears that I had, the things that I knew about what people thought (and still think) was slowly showing it's ugly face.

In the face of hardship, the truth started to reveal itself and people that was always pretending could not hide their true intensions anymore.