Review of 2023

Annual Review: 2023

Once again the end of the year is here, and it is time for my usual annual reflection on thoughts and activities throughout the year.

Symptoms

My key word for symptoms for 2023 is mobility. During 2023 I started taking baclofen. I feel like my walking speed is slower, and perhaps part of that is my increased acceptance of how I'm changing - choosing to walk at my own speed rather than other peoples speeds. I have had a couple of comments from people later in the year how my walk seems better. It is too early to say if the improved gait is a result of the baclofen, me walking slower, me being more accepting of this stage of life, some combination, or other factors!

Otherwise, the pattern of recent years has continued - more fatigue, needing to use my arms more, needing to sit down more often, and a bit of depression in the background. I noted last year that the baclofen start point should have been when I started to find things difficult to do rather than just slower. I'm not really sure which changes/factors made me realise that I was at this point.

For 2024 my thoughts are likely to revolve around determining when to start using more visible mobility aids, when to apply for a blue badge, and when to start declaring myself as being disabled.  

This Blog

I'm pleased with the continuing readership of this blog. My audience is similar, and there are similar popular posts. Posts continue to be linked to and used within other HSP and RareDisease communities. Thank you to everyone who reads, including people making comments appreciating what I say. Such feedback reinforces the reasons for writing the blog. During the year I've been also posting details of blog posts on Facebook, which may get a slightly broader audience. 

As noted in last years review, a consequence of depression is less enthusiasm for writing posts. Readers with an eye for detail may note that blog posts have tended to come out near the end of each month.

Survey

Whilst the annual pattern of my surveys is well established, I have not organised one for 2023. I am planning to write a summary paper covering highlights of all ten surveys undertaken 2013-2022 to be ready for rare disease day in 2024. The reason for this is to do with the amount of stuff going on in my life. I hope to be back for a new survey in 2024.

Community Contribution

HSP Community activities for 2023 included:

• Representing the UK at EuroHSP
• Carrying on with the Enable disability network at work
• Involvement with the ED&I group at the Institute of Acoustics
• Conversations/interviews with people about my HSP 
• Analysing and reporting the results of my survey to share with the HSP world

The main element of my community contribution is once again from being chair of the HSP support group, despite my decreased enthusiasm at times. In 2023 we've started having regular trustee meetings (rather than having them in response to activities). The trustees and I are working to ensure that the group continues to support its members in the most appropriate way - please reach out to help us.

Knowledge

My review each year makes a comment about new knowledge gained in the year. Basically I don't feel like I've spent much time looking into new things. I know that the research teams are all progressing with their work, and that might yield some new HSP treatment choices soon.

Outside of the HSP world, I'm continuing to hear second hand, third hand, or social media views expressed on/about disability. I'm reminded that I am in quite a privileged position, and that most of the able-ist views don't affect me directly. It is very easy to see how these views can result in large negative impacts on people, and it's a positive for me to have my weird stubbornness/optimism blend!