Review of 2018

Once more it comes near to the end of the year, and it is time for me to reflect on the years activities.

Knowledge

My key learning has been around activities with the HSP Support Group - I've been looking at safeguarding, which is still a work in progress. There have been a few interesting articles around exercise and HSP (or strictly neuromuscular conditions), and there was a load of really interesting analyses from my survey results - particularly the pain and walking side of things, and I liked the wellbeing analysis as well.

Symptoms

I had the results of my MRI scan - all OK (blog post on this in early 2019!). I am definitely becoming more distance limited, and am finding the need to sit more often, and it looks like my shoe wear rate is still increasing. There hasnt been much noticeable change in other symptoms, although perhaps my bladder is being to re-annoy me (blog post on this in early 2019!). I may also be getting more tired, but there are so many other things going on at the moment that this is difficult to point at HSP.  

This Blog

I'm really pleased with the continuing growth in readership of this blog! My audience remains broadly the same (predominantly US, UK, Canada, Australia, and then European countries. The most popular posts continue to be the results of my survey and my general posts on research and particular HSP symptoms. 

I now have a second year of Google Analytics tracking, which helps inform my blog statistics page. I'm really pleased that blog posts are being linked to and used within other HSP and RareDisease publications. Thank you to all my readers.

I continue to get comments from people appreciating what I have to say, which I'm very pleased to receive. 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. A couple of my favourite comments about the blog from this years survey are:

"Newly diagnosed so found blog in general search trying to gain more info. Your blog seemed to mirror my symptoms over the past few years. I finally have an answer to my pain and problems."

"Appreciate all the effort you put in to the surveys and sharing your personal experiences"

Survey

The now annual pattern of my surveys is well established. My 2018 survey has a similar number of responses to my 2017 survey, perhaps with a few more participants (although at the time of writing I've not discounted duplicates and empty answers). My new feature this year has been to offer translation sheets for the survey in a number of other languages so that I can get a wider spread of answers, and a quick glance at the answers shows that some have answered in languages other than English, so this has worked well. If you're reading this and want to take part then (providing it is still 2018) please do! Results will be out on 28th Feb after the majority of analysis during January.

Similarly, its good to get feedback on this. Three of my favourite comments from this year are:
"Some of the questions make me think about what I could be doing better."
"I enjoyed filling out survey to help others"

"Excellent survey. It’s interesting to compare my symptoms to others. "

Community Contribution

HSP Community activities for 2018 included:

• Being re-elected chairman of the UK Support Group!
• Continuing talking with people from other HSP groups
• Expanding my survey into more languages
• Analysing and reporting the results of my survey to share with the HSP world
• Coordinating the UK HSP Support Group response to consultations
• Continuing this blog and posting/discussing HSP things on twitter.

The main element of my community contribution comes from being chair of the HSP group. There are many issues, and I'm working with the rest of the trustees to ensure that the group continues to support its members in the most appropriate way. In 2019 I'll be working with the PARCC research project. More on that during 2019.

HSP in the news

Last year I mentioned Lily Rice, and this year she continues to be an inspiration, promoting and competing in WCMX. She also became Radio 1 Teen Hero during the year.  https://www.westerntelegraph.co.uk/news/16994523.lily-rice-named-bbc-radio-1-teen-hero/  and https://www.westerntelegraph.co.uk/news/16152411.manorbier-teenager-claims-silver-at-californias-world-wheelchair-motocross-championships/ 

Over in Australia there seems to be quite a bit of news on their programme to develop a treatment for HSP. They are currently in the process of preparing for a clinical trial (https://hspersunite.org.au/hsp-clinical-trial-program-update-december-2018/) following the pre-clinical trials (https://hspersunite.org.au/hsp-clinical-trial-program-update-june-2018/). I'm keeping an eye out for the results of those pre-clinical trials. Readers will note that the drug being trialled is Noscapine and it will be trialled on patients with SPG4, 

More new shoes

Its time for some new shoes again!

I have got through another two pairs of shoes, the Sketchers which I bought in April 2017 have now run their course, with a new pair bought in December 2018. This means that my sketchers lasted 1 year and 7 months, indicating that my rate of wear has gone up in the last year, with the previous pair lasting 2 years and 2 months.

Although my left shoe has a higher rate of wear than my left shoe, the interesting observation is that the wear on both shoes looks similar, perhaps indicating that the progression on my right leg is catching up with the left leg. Here are a couple of pictures - noting that my left shoe is on the right of both pictures:

You can compare these with the post I put in my May 2017 with my previous shoes: https://hspjourney.blogspot.com/2017/05/shoe-wear-update-data.html

This time I have chosen to replace them with some hi-tec waking shoes, so we'll see how the rate of wear on those goes.

In the other post I noted having bought replacement trainers as well as replacement shoes. Shortly after this I also bought clip-in shoes for my bike, so the new trainers from that time have had much less use, and the clip-in shoes are also bearing up well.

My other replacement pair of shoes this time is some shoes for work. I had decided that these were not looking good enough for wear in the office, so I have a new pair of work shoes. There has been shoe shuffling, so the pair now in my office are my other older pair, with the new shoes staying at home - this is principally because I cant get the inner sole out of the new shoes and I'll wear those without insoles. My other pair of shoes takes the insoles nicely, and those have moved to the office with the insoles.

You can see the wear pattern of the old shoes in these pictures. The left shoe is slightly more worn on the tip than the right shoe, but the wear on the right shoe is more round the corner. Whilst at work I go on less fun walking, so the majority of the wear is from indoor use - although I do try to get outside for half an hour at lunchtime most days. I do not recall how long I have had these shoes. Note again that my left shoe is on the right of both pictures.