2021 AGM - Falling With HSP

The 2021 AGM presentations followed the path established in 2020, with talks scheduled after the AGM on separate days. Our second presentation was Coralie Seary who is a physio from the National Hospital for Neurology and Neurosurgery in London. She talked about falling with HSP. Her work is in the clinic rather than research and she specialises in helping people with walking difficulties, most usually with FES or orthotics.

You can see the video of the presentation here: https://www.youtube.com/watch?v=f68yaDzYtvQ

Most of the information about people who fall is based on the elderly. One in three people who are over 65 have about 1 fall per year, increasing to one in two over 80. Those with neurological problems are twice as likely to fall as those without.

If you have a serious fall it can lead to a serious spiral with people fearing falling, people being less active, leading to decreases in strength or balance, leading to another fall, and so on.

There is a range of falling, with the most extreme being falling to the ground, but there are also near misses where you can prevent yourself from falling, and trips and stumbles. 

Falling is normal! Some falls can be considered acceptable whereas others are not acceptable. Acceptable falls are ones where you dont injure yourself or have a head impact. They might also occur where you are in a challenging balance situation - perhaps uneven/slippery ground or during sport/exercise. Unacceptable falls are where you do have injury/head impact, if it is a normal everyday activity or if you are in a vulnerable population. Coralie noted that having HSP is more likely to put you in a vulnerable population.

Risk Factors for Falling - Intrinsic

There are a number of generic risk factors which increase your risk of falling. If any of these apply then with some management they may reduce your risk of falling.

• Being older (older than 65)
• Having a walking impairment
• Having other chronic conditions (perhaps arthritis)
• Reduced muscle strength
• Impaired balance
• Fear of falling can increase your risk of falling again
• Dizziness (perhaps from postural hypotension)
• Inner ear/vestibular problems
• Vision (make sure your glasses prescription is up to date)
• Foot problems (painful corns, toenails, appropriate footwear)
• Poly-pharmacy - taking multiple medications
• Alcohol

Pairing one or more of these with HSP can increase your risk of falls further. Some of these can be managed to improve risk.

Risk Factors for Falling - Extrinsic

There are a number of other risk factors which increase your risk of falling.

• Light levels - either very dark or bright glare
• Obstacles around the house - wires, rugs, piles of books/toys, etc.
• Surfaces that you walk on - can choose footwear/aids to help in some circumstances
• Footwear - some types of shoes can help walking. Make sure shoe laces are tied
• Clothing - long clothing can get in the way of walking
• Ergonomics - minimise the number of turns you have to do to complete tasks, for example making a cup of tea in the kitchen 
• Use of inappropriate walking aids - check your aids are still appropriate, and clear out old ones.

Similarly, these can be considered so that you minimise the risk of falling.

Risk Factors for Falling - HSP Specific Factors

There are a number of other HSP specific risk factors which can increase your risk of falling.

• Gait patterns - inversion of joints, knees
• Weakness - hip areas, of perhaps its the timing of movement rather than weakness
• Stiffness - can cause imbalance
• Alignment of bones - can change centre of balance
• Sensory changes - e.g. change in information from skin to brain
• Fatigue - plan your day and energy use according to your expected fatigue levels
• Bladder problems - urgency can increase risk of falls, including at night.
• Reduced capacity for dual tasking

Aids to reduce risk of falling

There are aids which you can use to reduce risk of falling (and improve mobility), but it is recognised that often people have difficulties accepting the need for these devices. The best approach is to get used to using aids before having a fall, so some acceptance is needed.

Orthotics are external splits or aids to help pick your feet up and/or stabilise your gait. They can improve stability and/or the swing of the leg. 

Off the shelf orthotics are more flexible and can be a good introduction to using them. Custom made ones are usually more rigid and give you more control of the ankle/foot.

Insoles (or FFO, functional foot orthoses) can help control pronation (where feet roll in) or supination (where the foot rolls outwards).

Choosing your footwear can help a lot. The important factors are the shape of the sole, with a reasonable wedge to raise the heel and a toe spring at the front to help roll forwards on your foot. Some people find high boots are useful, and there are options for adapting existing shoes.

Neoprene or fabric ankle/knee supports/splits can give some support. Some look sporty others attach to your shoes. Carbon AFOs can give you some energy back when walking. The last type is a custom-made plastic AFO which gives the most support. The AFO can help re-align the leg and hip to improve gait. There are advantages and disadvantages to each type depending on what you need to do. There is NOT a one-size fits all approach for these with HSP.

An FES system stimulates the muscles when you move. They do not give you support when you stand still. They can help you walk further. Evidence suggests that using FES can improve peoples confidence walking rather than their walking speed or funciton.

Other aids to minimise risk of falls that you could use are walking poles, mobility scooters, wheelchairs, grab rails, stools (for sitting on), rollators/trolleys, adaptions to bath/shower. You may need different aids in different situations - indoors/outdoors, at home/away, etc. If you have these around your house and do not use them any more they can be an obstacle - get rid of them!

What else can you do?

• Exercise can help. Tai Chi is beneficial in older people in reducing risk of falling, and the benefit could be extrapolated for use in HSP or other neurological conditions 
• Strength and balance training is useful.
• Exercise should be high dose for benefits (least 50 hours over 6 months). Do something you enjoy!
• Stretches - maintain mobility, especially in calves
• Look at diet to maintain bone health - take calcium and/or vitamin D if diet is suboptimal or your are not doing weight bearing activities

How to fall

Plan how to fall. Consider the risk factors above. If you fall in one place then plan for a softer landing. You should relax and protect your head, and fall on your fleshy bits of your body. Falling on your bottom may be better than falling on your wrists. 

If you're able to, roll into the fall. You can find out better ways of falling - look up approaches that people with cerebral palsy follow - they can fall often.

Keep your mobile or an alarm handy so that you can get help, and if you live by yourself you may need a key safe so that people can get in to help you. It may be worth keeping blankets/pillows so that you are unable to get up you can keep yourself warm overnight.

To get up off the floor you should stay calm and assess the situation. It is worth practicing getting up so you've done it a few times. You can discuss falling and getting up techniques with your physio.

Symptoms update - my first fall!

So, I have been meaning to do a blog post for a few weeks giving a symptoms update. I have noticed some further changes in the last couple of months which would warrant a post, but I managed to go further than that and I fell - so that definitely makes the cut for a blog post.

Cycling Speed

I have been noticing over some time that my uphill cycling speed is dropping. I need to get into my lowest gear on relatively shallow hills more so than I have done before. This suggests that the power I'm able to deliver is decreasing. I will have to get out and try and go up something quite steep to see if it is possible! On a couple of my more regular routes there are some roads which people are often running along, and I am getting to the point when people running uphill are overtaking me sometimes!

Fatigue

This is one of those "is this HSP or not" things - I've been feeling quite fatigued more often, but I dont know if this is because it is due to increased effort moving coming from my gradually increasing spasticity or if it is because I am trying to fit too many things into my day (or indeed both!). I think that the solution is to do less, but I am far too stubborn to give up on things I have started, which makes doing less a challenge!

Pilates Update

Since Covid came into play everyone at my Pilates class now has their own equipment which they bring to class (face-to-face classes re-started earlier in the summer). Before Covid I had frequently borrowed a foam block (some 6-8cm think) which I would often sit on to make it more comfortable and to allow my spine to be more upright. When we moved to on-line classes I didnt have a foam block, but I do have a small step (some 15cm high) which my children used to get up to sink height when they were much smaller. This step helps me get more comfortable and allows my spine to be more upright (and I now take this to classes). I suspect at some point I'll need to increase the height again, perhaps to a small stool.

Also, at a recent class we used power loop bands, which we wore around our thighs at some points and around our ankles at other points. I found this particularly hard work, and I think that these power bands might be another good way of demonstrating what HSP is like to those who dont have it, especially around the thighs.

Difficulty Standing

I have previously mentioned in a symptoms update that I find it difficult to stand up from a full squat. The difficulty is now a bit wider than that, and getting up from the floor in many ways is becoming more tricky. I often find that I need to have something nearby to balance on to make it easier to stand up. When I am sitting down on my haunches I often need to use my arms to help stand up, either by pulling on something higher or pushing down to give me an assist getting up. This is partly to do with balance, and partly because I am worried that my muscles wont have the strength to allow me to stand up unadied.

I am sometimes also having to position my feet and position when standing up from a chair - particularly if it is a low down chair. Sometimes I will need to use my arms to either assist standing or to give me balance whilst standing. I wonder if it is time to start investigating baclofen....

Stairs and walking

I'm noting that I am using the bannisters more when going up and down stairs, and that my speed of ascent/decent is slowing down.

Now that I'm starting to get out and about with other people with the restrictions of Covid lifting I'm noting that my speed of walking is also slowing down. I dont really have any balance problems or difficulties walking, it is just that it takes a little longer to get places, and if I want to avoid my feet scuffing on the ground I have to concentrate on how I walk, which takes a little bit of attention and time. 

The Fall

So, I cant really mention having a fall without giving details. I fell whilst doing one of my stretches (the Adductor strech here: https://hspjourney.blogspot.com/2021/05/stretching-routine-2021.html). The photo there shows me stretching my right leg, but I fell whilst stretching my left leg. I had been noticing a bit of weakness there, and the muscle not feeling like it could hold my weight for some time now, but I have always been able to complete the stretch without falling until now (although it has been close a few times in recent weeks). Relating this to Coralies talk at the AGM I put this in the 'acceptable fall' box as I was doing something intentional!

In detail - I can get my leg onto the bed with my knee bent no problem, but the difficulty occurs when I straighten the leg, the adductors do not like that stretch, which I take to mean that they are somewhat spastic and not letting me get the full range of movement I want. I stretched the muscle further than it wanted to go, and it went back to where it wanted to be. The consequence of this was that my knee moved forward, my bottom moved backwards, I was not able to move myself to a more stable position quickly enough, and gravity decided that I would come tumbling down onto my bottom. Nothing was hurt or broken aside from my self-esteem!

The overall conclusion I draw is that my adductors are becoming more spastic, which is limiting the range of movement in my leg. The adductors are also used in pedalling my bike, so it may be that the reduction of uphill bike power as well.

The change that I have made to my stretches is to raise my leg to a lower height for that stretch so that I can keep my balance much more easily.

** Addendum 28th August 2021 - Symptoms Update from August 2020 **

After posting the text above I was scrolling through my draft posts, and realised there was this draft from August 2020 which I feel I didn't quite finish. So, here it is (with just a quick re-read and minor tweaks in brackets) 

I was taking a few minutes to track my first six months (of 2020) data in my spreadsheet the other day. There are a couple of things which have happened, and I am not sure that I have blogged about them previously. There are also a couple of other more recent changes, so this is a good opportunity to pop several things down in one place.

Stretching Routine

For quite a while I have only been doing one set of stretches per day. I had a look back through my Fit Bit history to work out when this started, and it turns out to be May 2019. Since this time I have dropped the evening stretches and kept up the morning ones. With one set per day I am being more rigorous with making sure that I do them (including the recently added crossed leg stretch), and that each session lasts for longer. 

Having said that, perception can be a funny thing. I reviewed the last few months worth of exercise logs, and whilst there are several weeks where I log 7 sets of stretches there are also several weeks where I'm down by a set or two. The reality is that I did drop some sets of stretches during corona virus, I didnt feel there was enough time to do everything, and on some days I took the choice to go on an early morning bike ride instead of do my stretches. Having to juggle; my work, being a part-time primary school teacher (during Covid lockdowns), things for the HSP Support Group, having some fun, getting some exercise and looking after my wellbeing all at the same time took a lot out of me and there was a fair bit of "dynamic re-prioritising" over this time! 

Bladder Medication

Back in mid 2019 I noted in a symptoms update post that I was trying the first of two approaches for bladder medication - i.e. taking the pill first thing in the morning rather than just before bed. This had been working well, although I was still noting the odd time when I was having some urgency issues. Earlier in 2020 I need to have a phone appointment with my GP to review the medication, and after discussing this we took the second option for a try - i.e. have half-dose pills and taking them twice a day instead of first thing in the morning. I take my two pills one first thing in the morning and the other at bedtime. I realise this isn't equally spaced in the day, but the timing works well. Again, I think this is also working well, and I think that the urgency problems have gotten smaller again.

Readers that have been reading for some time may remember that I swapped from Detrusitol to Neditol bladder medication in 2016 as there were some issues with getting supplies of Detrusitol at that time. I had left the dose information on my Symptoms Timeline page the same as the box clearly indicates that the dose is equivalent, however when I next update my Symptom Timeline page I will change the dose information to be more explicit about which medication and my dose.

Muscle Discomfort

A new symptom for me is that I am starting to find that my lower leg muscles are giving me a bit of discomfort, particularly in the evenings. If I leave my legs in one place then I can feel that there is some tension in the muscles which grows sufficiently so that I have to move my leg. I dont need to move my leg much, perhaps a few degrees change on the knee joint, or crossing my feet, or twisting slightly to one side or the other. I have a telephone appointment with the National in the autumn, and I'll bring this up with them as well and see if this is HSP or something else.

Walking and Cycling Limit

I think I'm noticing that my walking and cycling distances are becoming more limited again. For walking I need to find somewhere to sit down after shorter intervals. I know that I have mentioned this before, and it may only be a need to sit down for a couple of minutes, but my perception is that the distance/time between these "need to sit" pauses is becoming shorter.

On the cycling front, things have changed a little with corona virus, I have been working at home all the time since March (2020), which means that my biking has been entirely for pleasure since that time! At the tail end of last year I had sort of settled on needing to stop every 30km or so for a bit of a rest, and my approach was to try and plan my routes so that there was an enjoyable pub or cafe to stop at! At the start of lockdown pubs and cafes were all shut, so I had to go armed with snacks and stops were all open spaces with benches near my route. I think the conclusion is that the cycling limit is variable - some days I will need to stop and have a rest after 20km, whereas other days I can do a 40km plus route with only the odd brief pause.