Another year has passed and its time to reflect on things and consider how different things have become over the year.
Knowledge
Aside from the knowledge of my own symptoms my main knowledge activity this year has been getting further with the analysis of the research papers. This is quite a time consuming task, although it has helped me to appreciate the diversity of research that happens and what topics tie in with HSP. The main publication was early in the year with a study reporting new HSP genes and link with other diseases.
Symptoms
This year has seen a number of firsts - My first appointment with an HSP specialist, my first medication (Detrusitol), and if it weren't for the speed of the NHS system I should have had my first neuro-physio appointment as well. I've also been on a stress/mood management course, seen a bowel specialist and I'm using banisters more when going up and down stairs. I'll have to chalk up 2014 as a year of appointments, although I know already that there will be a fair few in 2015.
This Blog
The readership of this blog continues to increase. I've had more page views in 2014 than I had in 2013. My audience remains broadly the same (predominantly US, UK, Ukraine, France, Germany, Turkey, Russia). The most popular posts are the results of my survey, the various presentations given at the UK HSP Support Group AGMs and my general posts on particular HSP symptoms.
I've had various comments made that people appreciate reading what I have to say, which I'm very pleased to receive and gives another reason why this is a worthwhile thing to do. Just recently I had a conversation with my uncle who commented that when he was first diagnosed with HSP there was not very much information around at all. The most surprising thing I find is that people I know now come up and ask me about it, which I always find quite surprising!
Survey
I was really surprised how much coverage and readership the results of my 2013 survey were when I published them on 28th Feb, and this really set the path in motion for doing this every year. I've already got a few ideas lined up for 2015 and beyond.
I'll follow the same path for the 2014 survey - analysis will start in a week or so's time so I can write up to publish on 28th Feb - Rare disease day. There are still a few more days when I'll be taking answers!
Monday, 29 December 2014
Wednesday, 10 December 2014
Power Plate/Circulation Booster
My mum got a power plate/circulation booster for her birthday. Looking around these devices seem to come in two varieties.
Firstly, there are the "vibrating plate" type where there are various motors within the plate which cause it to vibrate. One of the main brands is Power Plate. These machines help get muscle tone when exercises are done whilst on the plate. Exercises might include squats, push-ups etc. The vibration causes the muscles to activate by reflex to compensate for the movement of the plate. This is, essentially, anerobic exercise. There are many claims made about what this can do, along with many sceptical people. It seems to me that such a device is unlikely to give massive weight loss, but getting muscles to activate by reflex sounds like there could be some benefits for HSP.
One study I found included someone with HSP which concluded that spasticity decreased in patients with cerebral palsy with the use of these plates.
http://www.medicaljournals.se/jrm/content/download.php%3Fdoi%3D10.1080/16501970600680262
Another shows improvement in walking in a patient with SP.
http://www.ncbi.nlm.nih.gov/pubmed/23045444
The other type of machine is the "circulation booster". This machine applies an electrical current to the soles of your feet to cause the muscles to activate by mimicking the muscle activation signals sent by the brain. The process is called electro muscle stimulation, or EMS. Generally EMS is used to in a number of ways to develop muscle strength. It is also used for rehabilitation and/or to prevent muscle loss/atrophy. Similarly there are weight loss claims which are generally received sceptically.
This technique is similar to FES (functional electrical stimulation). The circulation booster claims to stimulate muscles and improve blood circulation. There are a fair few papers out there which detail FES with HSP, but I couldn't find any for EMS.
To get back to my original line, my mum got one of the circulation boosters. I tried this for half an hour whilst I was there over the summer. I could feel that my muscles were being activated, and by the end of half hour I could feel this in my upper leg muscles too. Of course, half an hour isn't really long enough for a proper assessment, but one for me to bear in mind in the future.
Firstly, there are the "vibrating plate" type where there are various motors within the plate which cause it to vibrate. One of the main brands is Power Plate. These machines help get muscle tone when exercises are done whilst on the plate. Exercises might include squats, push-ups etc. The vibration causes the muscles to activate by reflex to compensate for the movement of the plate. This is, essentially, anerobic exercise. There are many claims made about what this can do, along with many sceptical people. It seems to me that such a device is unlikely to give massive weight loss, but getting muscles to activate by reflex sounds like there could be some benefits for HSP.
One study I found included someone with HSP which concluded that spasticity decreased in patients with cerebral palsy with the use of these plates.
http://www.medicaljournals.se/jrm/content/download.php%3Fdoi%3D10.1080/16501970600680262
Another shows improvement in walking in a patient with SP.
http://www.ncbi.nlm.nih.gov/pubmed/23045444
The other type of machine is the "circulation booster". This machine applies an electrical current to the soles of your feet to cause the muscles to activate by mimicking the muscle activation signals sent by the brain. The process is called electro muscle stimulation, or EMS. Generally EMS is used to in a number of ways to develop muscle strength. It is also used for rehabilitation and/or to prevent muscle loss/atrophy. Similarly there are weight loss claims which are generally received sceptically.
This technique is similar to FES (functional electrical stimulation). The circulation booster claims to stimulate muscles and improve blood circulation. There are a fair few papers out there which detail FES with HSP, but I couldn't find any for EMS.
To get back to my original line, my mum got one of the circulation boosters. I tried this for half an hour whilst I was there over the summer. I could feel that my muscles were being activated, and by the end of half hour I could feel this in my upper leg muscles too. Of course, half an hour isn't really long enough for a proper assessment, but one for me to bear in mind in the future.
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