Wednesday 31 March 2021

Why do stretches?

People with HSP often have a range of stretches to do. Frequently these are agreed with a physiotherapist, but sometimes people choose to do these independently. I remember a discussion with my physiotherapist a few years ago which has stuck with me and hasn't made it into a blog post, until now (with the help of some Google searches to help me remember the details). 

This is a discussion around why we do stretches - what happens to our spastic muscles.

All joint movements have two sets of muscles, the sets are on the opposite sides of each joint. To make the joint move one way you tighten one muscle set and relax the opposite set, and to make the joint move the opposite way you swap the sets of muscles which are tightened and relaxed. 

As a simple example your biceps and triceps control your elbow movement. To fold your elbow you have to tighten your biceps and relax your triceps. To straighten your elbow you must tighten the triceps and relax the biceps. The brain sends the messages to the muscles to do this.

Todays Google search on spasticity brings back an answer from the American Association of Neurological Surgeons, which I have cut, pasted and trimmed: https://www.aans.org/Patients/Neurosurgical-Conditions-and-Treatments/Spasticity

Spasticity is a condition in which muscles stiffen or tighten, preventing normal fluid movement. The muscles remain contracted and resist being stretched, thus affecting movement. In the elbow example, if your biceps become spastic, then they remain contracted, which means that straightening your elbow becomes more difficult - the triceps have to do the usual work of moving your forearm and the additional work of fighting against the spastic biceps. If both sets of muscles are more spastic then it becomes more difficult to move the elbow in either direction - each muscle has to do its usual work, fight against the spasticity in the opposite muscle, and its own spasticity makes it difficult to move itself.

Spasticity is generally caused by damage or disruption to the area of the brain and/or spinal cord that are responsible for controlling muscle and stretch reflexes. We know that in HSP the nerves in the spine deteriorate and the signals between the muscles and the brain are disrupted.

Muscle cells which are spastic become shorter and stiffer than similar cells not affected by spasticity. (ref: https://onlinelibrary.wiley.com/doi/abs/10.1002/mus.10247). The muscles themselves become physically shorter the more spastic they become. The opposite is also true, muscles that are stretched regularly are longer than those which are not. (This physically shorter/longer muscle point was the key thing I remembered from my physio discussion as the basis of this post)

The purpose of stretching is to help reverse the shortening of the muscle cells. There are plenty of websites offering similar opinions that stretching is beneficial for muscles (although equally there are studies saying that it is difficult to draw firm conclusions on this front). The key point is that if your HSP is such that you are less able or unable to operate the muscles, you can still bend the joint by other means (perhaps with help). By stretching the muscles regularly you can either prevent the muscle from becoming any shorter or reverse some of the shortening that has already occurred. This is one of of the areas where the HSP mantle: 'use it or lose it' comes from. 

Doing a set of stretches will not change the signals which get fed up and down the spine, they will just change how easy it is for the muscle to move in response to the signals which are received from the brain. (Note - I wonder if the nerve signals from the muscles back to the brain may travel more easily, because the 'intended muscle position reached' signal may be stronger. A question for another day!) 

From my perspective, I can still move all of my joints, although I cannot move some joints as far or as easily as I used to. The work that I did with my physio was to look at which muscles were becoming spastic, and to look at stretches to keep those muscles as long as possible. You can see the stretches that I was doing a few years ago here: https://hspjourney.blogspot.com/2018/04/stretching-routine.html. I have added a few more since then, and at some point I'll do an update post with the new ones. 

As we know with HSP the spasticity in our muscles changes slowly as the nerves degrade slowly over time. Similarly, it takes time for the cells in muscles to grow as a result of regular stretching. The most difficult thing is trying to work out if you are getting any benefit from stretches or not. You are mentally trying to balance the speed of your HSP degradation against the slow speed of any gains in muscle length which you are making. So, it might be that you can detect the benefits of your stretches at other times by noticing, for example, that sitting at rest feels more easy than it did before.

If you can move all your joints, and get yourself into a position where you are stretching the muscles, then you may need to keep this up for a number of months to get a noticeable change - and hopefully that is quicker than the speed which your HSP deteriorates. If you cannot move your joints by yourself or you cannot get yourself into a position where you can stretch the muscles then it will be more difficult to explore this issue by yourself.

My approach since I started doing my stretches has been to adapt those stretches to include muscles which I notice are becoming more stiff. My key areas of observation are; how difficult I find exercises at Pilates, how easy I can reach for things, how easy I can put my socks on/cut my toenails, how easy it is to use the stairs, how long it takes me to feel uncomfortable sitting down, and so on. I am still doing all of the stretches which are shown on that stretches page, and I have just added a few more in. I now do one set of stretches each day, which usually lasts between 15 and 20 minutes. Essentially I have become my own physiotherapist!

Obviously, I don't have an identical twin who hasn't been doing those stretches, but my perception is that I get benefits from those stretches. I haven't noticed that I am able to stretch any muscles more as a result, but equally I haven't noticed any muscles becoming shorter either. My conclusion is therefore, that my stretching is more-or-less offsetting the progression of my HSP. My control continues to deteriorate slowly, but I dont think my strength or range of movement is changing much. 


Sunday 14 March 2021

Coronavirus Vaccine Time

In recent weeks there have been various people querying if the various coronavirus vaccines are safe for people with HSP. There is no evidence to say that they are not safe. I advise anyone to discuss any concerns with their GP before having their vaccination. The overwhelming body of evidence shows the available vaccines are safe and effective, with remarkably few side effects other than a mild local reaction (arm soreness at injection site) and mild general symptoms (e.g. slight fever or tiredness) in about 10-20% of cases. These typically only last a day or so. So the risks from catching coronavirus are far greater than any risks from vaccination.

The UK has divided its population up into groups so that they can prioritise the people who have the highest risk of serious illness or mortality. The first group (Group 1) included those living and working in care homes. Much of the evidence was that people with some underlying health conditions put them in this higher risk category. Those with HSP fall into one of two groups.

People who have complex HSP which includes cognitive problems (this might also be called intellectual disability or learning difficulties) are more likely to be considered extremely vulnerable. Depending on exact circumstances these people are likely to be in one of the higher groups (group 4) for Covid-19 vaccination, particularly if those cognitive impairments are advanced or neurological problems are complex. Groups 2 and 3 captured people aged 75 and above. Group 4 also includes people aged 70-75

Those people who have more advanced HSP without cognitive problems will meet the criteria for underlying health conditions (group 6). Group 6 also includes people who care for those who are elderly or disabled, including people with HSP. Group 5 is people aged 65-70, and groups 7 and above capture the population aged below 65.

Those people who have mild HSP probably have a similar risk profile to people of the same age, but could still be classified under group 6 as they have a neurological condition, which is on the list of underlying health conditions.

In terms of timelines, those in Group 4 were invited to have their vaccination late January - early February. Those in group 6 are being invited at the moment (early March), and the advice in the last day or two has been that anyone with an underlying health condition who has not been invited to have their first vaccine, and this can be done on-line or by calling 119.

22 Charities have written an open letter to encourage people to get the vaccine, and further details and a copy of that letter can be seen here:

https://www.gov.uk/government/news/health-charities-back-vaccines-drive-for-those-at-risk

For me, I was notified that I was eligible to have the vaccine by my doctor, and I had my first jab yesterday evening. I had the Astra-Zeneca one. In terms of side effects, my arm feels a little sore, but otherwise there are no side effects for me.

If there is anyone reading this in the UK with HSP and has not been invited to have their vaccination yet, then I encourage you to go and get your vaccination.

For any readers outside the UK, I suggest that you investigate opportunities for vaccinations in your countries, especially if your HSP is more advanced.