Friday, 27 January 2023

Exoskeleton for HSP approved in Japan

 I saw this in the news the other day. 

A lower body exoskeleton has been approved in Japan for the treatment of HSP. The exoskeleton is meant to improve gait and reduce progression. The various documentation points to a clinical trial, but the results do not appear to be published. 

The trial appears to have begun in 2016 and was completed in 2018. They seem to have looked at both people with HSP and with HTLV-1-associated myelopathy (HAM). In total 42 people took part, but it doesn't say how many had HSP.

The trial had people using the exoskeleton and a hoist in 40 minute blocks, nine times within one month. The 40 minute period comprised a 5 minute warm-up, 30 minutes of gait training and 5 minutes of cool down. A control was run using the same 40 minute blocks with a hoist but not the exoskeleton. The primary outcome was a two minute walking test, and various secondary measures were also measured.

The exoskeleton reads bioelectric signals and adjusts the power of the exoskeleton in response. They call this process interactive biofeedback, and identify that this process can regenerate some neural function. 

No results are given to identify what the benefits were for people with HSP or how long those benefits lasted, but it is interesting to think that this may be an option to help people with HSP. One of the doctors who ran the test is quote in a press release saying that the exoskeleton significantly improved gait (in the primary and clinically important secondary endpoints) in HAM and hereditary spastic paraplegia. The trials demonstrated that Cybernics Treatment can regenerate neural function through interactive biofeedback (iBF).

This exoskeleton is also used to similarly treat other neurological conditions: Spinal muscular atrophy (SMA), Spherospinal muscular atrophy (SBMA), Amyotrophic lateral sclerosis (ALS), Charcot-Marie-Tooth disease, Distal myopathy, Inclusion body myositis, Congenital myopathy, Muscular dystrophy.



Here are the various links I read to write this post:

https://exoskeletonreport.com/2022/11/medical-hal-exoskeleton-approved-for-treatment-of-ham-and-hereditary-spastic-paraplegia-in-japan/

https://www.cyberdyne.jp/english/company/PressReleases_detail.html?id=12909

https://exoskeletonreport.com/product/hal-lower-limb/

https://www.cyberdyne.jp/english/services/CybernicsTreatment.html#:~:text=Cybernics%20Treatment%20is%20a%20treatment,stroke%2C%20neuromuscular%20diseases%2C%20etc.

https://dbcentre3.jmacct.med.or.jp/JMACTR/App/JMACTRE02_04/JMACTRE02_04.aspx?kbn=3&seqno=5969#OtherInformation

Monday, 2 January 2023

2022 Blog Data and Health Review

One of my tasks for the passing of the new year is to update the pages of this blog so they are up to date. I have now done this. Readers may have spotted that there are 4 pages, and this post gives an update of the changes and observations from each page. A review of my health first, followed by blog statistics and the two straightforward updates.

Health Review: http://hspjourney.blogspot.com/p/symptoms-timeline.html

Once again I've a spreadsheet which tracks various health data, which I publish headlines from on my symptom tracker page. The key observation from 2022 is that my cycling distance has shrunk considerably and at the same time my weight has increased also considerably. I think that its fair enough to say that my regular cycling was helping keep my weight in check.

During coronavirus pandemic lockdowns I was able to decrease my weight with a low point at end of 2020/start of 2021. I did this by paying more attention to the sizes of my portions. It looks like I'll need to do that again during 2023 to help target a more healthy weight.

This graph shows my cycling since I started tracking data, with the yellow colour showing my commute cycling and the blue showing my other cycling (in km on the right hand axis). The other main point to note from this graph is that my maximum speed in 2022 was generally slower than my minimum speed in 2016/early-2017 (in km/hr on the left hand axis). 

Part of my reasons for tracking was to see how average speeds were changing over time, with the minimum, maximum and average speeds staying reasonably level up until around 2020.


The data for number of steps and active minutes have decreased similarly with the cycle distance, and I have realised that the step count is more of an activity tracker than a specific step counter. I'm considering trying out an electric bike so that I can maintain my level of activity whilst my spasticity makes cycling harder work. My other thought process is to consider a rowing machine to help my upper body strength in preparation for that point when I'll need to begin using a wheelchair. 

In terms of other data being tracked, I note that my sleep has increased in the last few months, back up to where it was in 2017. There are two possibilities for this - one is around antidepressants and mood. One of the first things I noted when starting to take my antidepressants was a decrease in my resting heart rate, and my head is in a better place now than it was during 2019-2021. The other possibility is around bladder medication. 2017 was at the beginning of my bladder journey, and at that time I wasnt having to visit the toilet during the night. In 2020 I switched from one to two bladder tablets per day, and in 2021 I changed tablet type. Of these factors the mood one fits more easily into the sleep pattern.

The last pattern to note is alcohol. I drank less in 2022 than in any previous year, however the pattern is changing - on days when I have a drink I'm often drinking more, but there are fewer of these drinking days.

Blog Statistics: http://hspjourney.blogspot.com/p/blog-statis.html

On the whole this is a straightforward update. I've a spreadsheet which I update each year with the updated totals for each page, using a blend of both Blogger and Google Analytics data.

When looking at the total readership of pages, this follows the usual pattern. I up the threshold which I use for this data so that there are about 30-35 posts shown. However, the total readership of my blog in 2022 was lower than in recent years, so I've had to lower the in-year readership level to give the top twenty-ish posts for the year. 

I need to reflect on if there are any changes that I've unintentionally made in my posts, or some other change in what I've been doing to let the world know about my posts. A review of the list of posts suggests that there isnt much differences between topic posts in 2022 compared with previous years. It might come down in part to there being one fewer AGM presentation in 2022, or my depression/anxiety meaning that my posts are not so readable/not promoted as much. 2022 had fewer people arriving from other HSP/rare disease groups, so that may also be a factor. 

Index: http://hspjourney.blogspot.com/p/index.html

This was very easy, I have added all of the 2022 posts to the index in the relevant categories, so the index is up to date (well, until I post publish on this post....)

Survey Page: http://hspjourney.blogspot.com/p/my-on-line-resarch.html

Again, very easy update here. I had updated this early in 2022 with the table showing which topics were in which survey year, so the update for now was to simply add the abstract and links for my 2021 survey results.