Review of 2021

Annual Review: 2021

So we have completed another orbit around the sun, so it is time to reflect on my thoughts and activities that have happened throughout the year.

Knowledge

Similarly to 2020, 2021 has felt hectic. There have been one or two interesting looking papers on HSP which I have spotted recently, and I will attempt to review in early 2022. A quick review shows that there were just over 200 papers on HSP published in 2021, which appears to be the first year this total has been reached (there were between 100 and 200 papers every year 2013-2020), so there is plenty to look at!

My other key area of knowledge has come through my mum. She has been experiencing some changes in symptoms in the latter part of 2021, which has given me a lot to think about, and some key insights into symptoms changes further down the HSP journey than I am now. 

Symptoms

I think the key word for symptoms for 2021 is fatigue. I have been feeling a lot more fatigued than before. I discussed this at my neurologist appointment this year, and will update on that in a few months time. The other main point from that appointment is that I am not yet at the point where I need to think about spasticity medication. My appointments are now annual rather than bi-annual.

On the less obvious front, I'm finding that I need to use my arms more to assist with standing up, and that as noted last year I'm needing to sit down after less standing/walking time. I think that my muscle strength is starting to go. I havent cycled as much as last year. In 2020 I got to 6000km, and I had decided that was more than I wanted to do in 2021, so I set myself a 5000km target. I was on-track until September (about 3500km), when all kinds of other things started going on. A consequence of considerably less cycling has been weight gain, which means that my body now has to work harder to move my increased weight around. 

I've realised that I need to change my description of when I think I might consider myself disabled. I've been saying "5 to 10 years" up until now (which is sufficiently far in the future to put it out of mind), but I think that I ought to revise that to "some 5 or so years" - or something like that. It is relevant to note that my mental health has been affected a bit.

This Blog

I'm really pleased with the continuing readership of this blog. My audience remains broadly the same (predominantly UK, USA, Canada and European countries: particularly France, Netherlands and Germany, as well as Australia, Brasil and India). The most popular posts continue to be the questions for and results of my survey, as well as my general posts on research and particular HSP symptoms.

 
I'm really pleased that blog posts continue to be linked to and used within other HSP and RareDisease communities and publications. Thank you to all my readers, including those that give comments appreciating what I have to say. Feedback like this gives me another reason why this is a worthwhile thing to do. Thank you to anyone that makes a comment or connects up with me in some other way. 

Survey

The annual pattern of my surveys is well established. My 2021 survey has a new highest number of responses, being almost 600 as I write this post. The main change is the addition of German to the languages and promotion through the German and Austrian groups. As recent years I have collaborated across countries getting the questions right. Results will be out on 28th Feb after the majority of analysis during January.

Community Contribution

HSP Community activities for 2021 included:

• Preparing a trustee recruitment advert for the Support Group
• Starting up a Instagram channel for the Support Group
• Carrying on with the Enable disability network at work
• Involvement with the new ED&I group at the Institute of Acoustics
• Representing the UK at EuroHSP
• Analysing and reporting the results of my survey to share with the HSP world
• Continuing this blog and posting/discussing HSP things on twitter
• Working with PARC on the latest grant application

The main element of my community contribution comes from being chair of the HSP support group, with the key activity being our 1000 mile challenge. Whilst we are getting various issues resolved, there are still many to go. I'm working with the rest of the trustees to ensure that the group continues to support its members in the most appropriate way - please reach out to help us.