There have been several HSP stories in the news recently which I thought worth sharing.
The benefits of stretching
This story was on the Australian HSP site this week: https://hspersunite.org.au/daily-duration-stretching-pays-off/
In summary, nine patients with HSP took part in a study where they were given a stretching routine to follow. The stretches were high load long duration stretches for specific muscles. Each person was reviewed and given their own routine. Stretches were undertaken six times a day for 15 minutes a time - so 90 minutes a day stretching, completed for more than one year. The muscles were selected based on how short they had become.
The outcome was assessed in terms fof range of movement for the muscle and ambulatiopn speed. 40% had higher walking speeds, half had better range of movements. two thirds were in a higher ambulation category.
This shows that regular stretches really do help HSP. The study also included patients with hemiparesis, and the abstract doesnt describe if the proportion of people with improvements was the same across both conditions.
Dancing with HSP
This website was posted on the Spatax website: https://www.clickanddance.com/videos - it gives a sequence of videos which you can follow to improve. Two sets of videos are given, one for those who can stand un-aided, and antoher set for those who need the help of a chair. Dancing is a physical activity, so good for health, and the use of different muscles can help. You may even enjoy it!
Original post: https://spatax.wordpress.com/2018/11/14/danse-to-improve-your-well-being-even-with-ataxia-or-spasticity/
Incontinence Pants
This story caught my eye on the BBC news feed. (https://www.bbc.co.uk/news/business-46220556) Its not directly related to HSP, but I thought worth a mention. This company makes incontinence pants for ladies that look like pants! https://www.giggleknickers.co.uk/. Their story comes from mild incontinence following surgery, but the same factor is true of HSP, and these pants are machine washable.
This blog records my journey to Hereditary Spastic Paraplegia (HSP, also known as Familial Spastic Paraparesis or FSP). I was diagnosed with SPG4 in 2009 when my wife became pregnant with our first child. I currently wear insoles, do daily stretches and weekly Pilates. I take medication for my bladder. I tweet about HSP, RareDisease and other things @munkee74.
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Sunday, 25 November 2018
Tuesday, 6 November 2018
Vibration sensitvity / numbness
I had seen loss of vibration sensitivity in the legs as one of the potential HSP symptoms. At work I deal in noise and vibration, and so this had caught my attention.
Wearing my "work" hat I was determining that generally we dont experience vibration that often, and I know that humans are quite sensitive to vibration. I was trying to think of a situation when you would know that it is vibrating whilst at the same time noticing that you weren't feeling it in your legs. I couldn't think of a situation like this!
However, earlier in the year I went to the HSP clinic and they tested my vibration sensitivity, and it was actually very easy. A tuning fork was set vibrating, and the handle was then placed on my leg - could I feel it? And so, my vibration sensitivity is retained for now (at least).
I wondered where the origins of this came from. A quick bit of internet searching suggests that the use of a tuning fork to detect vibration sensitivity is usually credited to Heinrich Rumpf, who published findings in 1889.
Various extracts from articles:
The use of the tuning fork to clinically test vibration sense is generally credited to Heinrich Rumpf, professor and director of the poliklinik in the University of Marburg, who published his findings in 1889. A controversy surrounded its significance. Tomson, Treitel, Rydel, and Seiffer argued that it was a discrete sensation, sometimes impaired when touch and pressure sensation were preserved, in tabes and polyneuritis. Egger in Dejerine’s clinic, and Schwaner, thought that the receptors lay in the periosteum but the sensation (pallaesthesiae) was conducted by bone. However, vibration sense was not generally accepted as a valid clinical test for another 10 years.
https://jnnp.bmj.com/content/65/5/728
Although vibratory sense had been described by Cardano and Ingrassia in the 16th century and tests had been developed by Rinne and Rumpf by the 19th century, it was not until 1903 that Rydel and Seiffer found that vibratory sense and proprioceptive sense were closely related and that both senses were carried in the posterior columns of the spinal cord. By 1955, the sensory examination included tests for light-touch, superficial pain, temperature, position sense, vibration, muscle (deep pain), and two-point discrimination.
https://www.thieme-connect.com/products/ejournals/abstract/10.1055/s-2002-36762
I couldn't find an easy article describing when vibration sensitivity became part of the standard neurological test, but it would appear to be somewhere between about 1900 and 1955.
My next path is to look at early mentions of vibration with HSP, and see when that was first mentioned. Finding copies of old medical journals on-line for free is a challenge! This paper from 1963 notes that loss of vibration sense is one of the more frequent "additional" symptoms of HSP - it's about two thirds of the way down the left hand column on page 518. here https://jnnp.bmj.com/content/jnnp/26/6/516.full.pdf. Assuming that the text on P518 is referring to the referenced articles, it suggests that it was spotted either in the early 1900's or in the 1950's. Further investigation is required.
I note that this paper also has references for a load of the early HSP papers!
Wearing my "work" hat I was determining that generally we dont experience vibration that often, and I know that humans are quite sensitive to vibration. I was trying to think of a situation when you would know that it is vibrating whilst at the same time noticing that you weren't feeling it in your legs. I couldn't think of a situation like this!
However, earlier in the year I went to the HSP clinic and they tested my vibration sensitivity, and it was actually very easy. A tuning fork was set vibrating, and the handle was then placed on my leg - could I feel it? And so, my vibration sensitivity is retained for now (at least).
I wondered where the origins of this came from. A quick bit of internet searching suggests that the use of a tuning fork to detect vibration sensitivity is usually credited to Heinrich Rumpf, who published findings in 1889.
Various extracts from articles:
The use of the tuning fork to clinically test vibration sense is generally credited to Heinrich Rumpf, professor and director of the poliklinik in the University of Marburg, who published his findings in 1889. A controversy surrounded its significance. Tomson, Treitel, Rydel, and Seiffer argued that it was a discrete sensation, sometimes impaired when touch and pressure sensation were preserved, in tabes and polyneuritis. Egger in Dejerine’s clinic, and Schwaner, thought that the receptors lay in the periosteum but the sensation (pallaesthesiae) was conducted by bone. However, vibration sense was not generally accepted as a valid clinical test for another 10 years.
https://jnnp.bmj.com/content/65/5/728
Although vibratory sense had been described by Cardano and Ingrassia in the 16th century and tests had been developed by Rinne and Rumpf by the 19th century, it was not until 1903 that Rydel and Seiffer found that vibratory sense and proprioceptive sense were closely related and that both senses were carried in the posterior columns of the spinal cord. By 1955, the sensory examination included tests for light-touch, superficial pain, temperature, position sense, vibration, muscle (deep pain), and two-point discrimination.
https://www.thieme-connect.com/products/ejournals/abstract/10.1055/s-2002-36762
I couldn't find an easy article describing when vibration sensitivity became part of the standard neurological test, but it would appear to be somewhere between about 1900 and 1955.
My next path is to look at early mentions of vibration with HSP, and see when that was first mentioned. Finding copies of old medical journals on-line for free is a challenge! This paper from 1963 notes that loss of vibration sense is one of the more frequent "additional" symptoms of HSP - it's about two thirds of the way down the left hand column on page 518. here https://jnnp.bmj.com/content/jnnp/26/6/516.full.pdf. Assuming that the text on P518 is referring to the referenced articles, it suggests that it was spotted either in the early 1900's or in the 1950's. Further investigation is required.
I note that this paper also has references for a load of the early HSP papers!