The final presentation at the AGM was an ad-hoc presentation by Jon Graham of Physiofunction (https://www.physiofunction.co.uk/).
Jon described that Functional Electrical Stimulation (or FES for short) was part of a rehabilitation triad that they use at physiofunction. The three elements of the triad are Physiotherapy, Exercise and Technology.
Where there is a muscle imbalance the FES system stimulates the nerve, this fires the muscle and causes it to move. The FES systems are usually positioned so that they lift the foot up when stimulated, often making it lift quicker than it would without the FES. The level of stimulation can be varied over time, as patterns in your gait change, and so that you prevent system over-loads.
The main centres for FES in the UK are Birmingham and Salisbury, and two of the main equipment manufacturers are Bioness (https://www.bioness.com/Home.php) and DM Orthotics, or DMO (https://www.dmorthotics.com/). Jon noted that traditionally FES is provided by a unit which straps round your leg, the technology is moving on and it is becoming incorporated into a sock or membrane. You can get whole body systems, such as the Mollii suit (http://www.remotion.co.uk/) which instead of having a few pads like the strap-on system can have between 45 and 50 pads.
There are four routes to getting FES on the NHS. Some regions have a commissioning service. You may be able to register as an "exceptional case". You may be able to regard FES as a mobility aid and get this through the back to work scheme, or you can go through a private channel.
NICE note that FES can be used to help footdrop of central neurological origin (https://www.nice.org.uk/guidance/ipg278) - which would include HSP.
FES can be used to help build muscles by use with FES Cycling, where the FES system helps you to pedal a stationary bike, and the pedalling helps build your muscles up again.
Jon concluded by mentioning the National Footdrop Society (https://www.nationalfootdropsociety.com/)
Tuesday, 31 July 2018
Sunday, 29 July 2018
AGM 2018: An overview of Occupational Therapy - Fiona Shea
The second presentation of the AGM was Fiona Shea, who is an occupational therapist. She gave an overview of occupational therapy.
Essentially an occupational therapist helps people achieve their aim. This might be by resolving physical issues, by looking at the person and the environment they live in, by looking at rehabilitation or posture. The practice is both generalised and specialised. Fiona noted that the physical issues that she resolved are not always physical issues, often she helps those with mental illness.
Occupational therapy works in a simple four stage process. The first stage is to assess the situation. The second stage is intervention planning, followed by the third stage of putting the intervention(s) in place. The final stage is to evaluate the intervention. The evaluation may show a need to re-assess and re-plan interventions, or if the intervention has been successful the patient would be discharged.
The assessment stage looks at the person and identifies what they are having issues with. Fiona described a model which is used by occupational therapists to show the inter-relation between the person, their occupation and their environment. I describe this model at the end of this post.
When interventions are being planned the can sometimes be small, and other times they can be longer term objectives, built up at an appropriate speed. The goal of the intervention must be smart (specific, measurable, achievable, relevant, and time-bound.) If the patient has accepted their condition/situation then this can make intervention planning easier.
Once the intervention has been planned, if it involves behaviour change then it is up to the patient to put this into place. If the person is not bothered by the issue then the goal has not been set right.
The evaluation stage becomes assessing if the goals have been met. If not, a re-assessment or re-setting of the goal may be in order. If the goal has been met then there is a need to look to the future to consider what may happen going forward before being discharged.
CMOP-E Model
The CMOP-E model has been developed by the Canadian Association of Occupational Therapists (https://www.caot.ca/) and is called the Canadian Model of Occupational Performance and Engagement.
It is worth noting that occupation in occupational therapy doesn't mean your job or profession, it refers to humans as "occupational beings" - i.e. they live by undertaking a series of goal directed activities. The picture below shows the model. The triangle is the person, with their spirituality at the centre - it is their driving force. The main factors considered for the person are the Physical (doing things), Cognitive (thinking about things) and Affective (emotions about things). The triangle sits on a circle representing the occupation, split into self care (dressing, eating, sleeping etc.), productivity (things done to help yourself or others) and leisure (things done for enjoyment etc.). Finally, the person and their occupation are in an environment. The four key factors in the environment are the physical environment (how accessible/near things are), the institutional environment (covering things like doctors/hospitals, employers, benefits etc.), the cultural environment (for example a persons customs and behaviours) and the social environment (friends, family, social groups etc.)
Each of these items are inter-related, and the OT has the task of identifying interventions to help restore the balance between these different elements. I found these links quite useful:
https://musculoskeletalkey.com/applying-the-canadian-model-of-occupational-performance/
https://www.slideshare.net/KavitaMurthi/canadian-model-of-occupational-performance-and-engagement-71016307
https://www.mindmeister.com/1048711251/cmop-e-canadian-model-of-occupational-performance-and-engagement
Essentially an occupational therapist helps people achieve their aim. This might be by resolving physical issues, by looking at the person and the environment they live in, by looking at rehabilitation or posture. The practice is both generalised and specialised. Fiona noted that the physical issues that she resolved are not always physical issues, often she helps those with mental illness.
Occupational therapy works in a simple four stage process. The first stage is to assess the situation. The second stage is intervention planning, followed by the third stage of putting the intervention(s) in place. The final stage is to evaluate the intervention. The evaluation may show a need to re-assess and re-plan interventions, or if the intervention has been successful the patient would be discharged.
The assessment stage looks at the person and identifies what they are having issues with. Fiona described a model which is used by occupational therapists to show the inter-relation between the person, their occupation and their environment. I describe this model at the end of this post.
When interventions are being planned the can sometimes be small, and other times they can be longer term objectives, built up at an appropriate speed. The goal of the intervention must be smart (specific, measurable, achievable, relevant, and time-bound.) If the patient has accepted their condition/situation then this can make intervention planning easier.
Once the intervention has been planned, if it involves behaviour change then it is up to the patient to put this into place. If the person is not bothered by the issue then the goal has not been set right.
The evaluation stage becomes assessing if the goals have been met. If not, a re-assessment or re-setting of the goal may be in order. If the goal has been met then there is a need to look to the future to consider what may happen going forward before being discharged.
CMOP-E Model
The CMOP-E model has been developed by the Canadian Association of Occupational Therapists (https://www.caot.ca/) and is called the Canadian Model of Occupational Performance and Engagement.
It is worth noting that occupation in occupational therapy doesn't mean your job or profession, it refers to humans as "occupational beings" - i.e. they live by undertaking a series of goal directed activities. The picture below shows the model. The triangle is the person, with their spirituality at the centre - it is their driving force. The main factors considered for the person are the Physical (doing things), Cognitive (thinking about things) and Affective (emotions about things). The triangle sits on a circle representing the occupation, split into self care (dressing, eating, sleeping etc.), productivity (things done to help yourself or others) and leisure (things done for enjoyment etc.). Finally, the person and their occupation are in an environment. The four key factors in the environment are the physical environment (how accessible/near things are), the institutional environment (covering things like doctors/hospitals, employers, benefits etc.), the cultural environment (for example a persons customs and behaviours) and the social environment (friends, family, social groups etc.)
Each of these items are inter-related, and the OT has the task of identifying interventions to help restore the balance between these different elements. I found these links quite useful:
https://musculoskeletalkey.com/applying-the-canadian-model-of-occupational-performance/
https://www.slideshare.net/KavitaMurthi/canadian-model-of-occupational-performance-and-engagement-71016307
https://www.mindmeister.com/1048711251/cmop-e-canadian-model-of-occupational-performance-and-engagement
Wednesday, 27 June 2018
AGM 2018: A Carers Perspective of Living with HSP - Pat Reed
The first presentation of the AGM was one of the groups members, Pat Reed, giving us a carers perspective of HSP. Pats husband, Terry, has HSP, diagnosed in the early 1990's. He was additionally diagnosed with Parkinson's in the mid to late 2000's. This post is Pats story.
Pat described their initial journey with HSP, starting to use, and then making decisions at each stage as the needs change, using more or different walking aids. Additionally, they had an increasing need to plan toilet stops into journeys. The Parkinson's diagnosis came at about the same time as the move towards needing a wheelchair. The combination of HSP and Parkinson's is rare, and this is coming from the perspective that HSP is rare in itself.
The journey towards being a carer is slow, like the journey with HSP and its symptoms. In the early stages you don't consider yourself to be a carer, but as the HSP and the Parkinsons takes away the person that you love, that relationship changes into carer and cared for. As the changes are gradual there isnt a specific point when this switch happens, and that doesn't stop you from loving that person.
There is a large amount of team-work involved in this relationship, and the problems are always the conditions, never the person. Solutions are found which work, and these are developed over time as the symptoms change. At the moment, fatigue is key, with energy levels dropping it is a time to make difficult choices about what to stop doing, and what to keep on doing. Difficult decisions to be made when you enjoy and have passion for doing these things.
As a carer, as the condition changes and the need for caring increases, it is necessary to give up your own interests so that you put your energy into ensuring that your loved one can carry on going for as long as possible.
With two conditions, there is a lot of medication to be taken, over a 17 hour period each day. There are alarms and reminders, and the medication interferes with the lack of energy and the ability to have flexibility in your routine. Money has been spent on modifications have been made at home, with lifts, wet rooms, ramps and wider doors. The caring routine includes helping getting dressed, helping getting in and our of bed, helping going to the toilet and helping transfer to a wheelchair.
A range of different specialists have been seen, including occupational therapists, neuro-physiotherapists, and staff at a MS/Neuro centre. Each has been able to offer their help, but for limited times, and the changes to health conditions mean that it is not possible to get to the centre any longer. There have also been various visits to hospital, A&E, but also advice to avoid going to hospitals if possible. This means a further change in the relationship, from carer, to carer and nurse.
The tricky question is - what happens when something happens to the carer? One incident meant that the caring routine was disrupted by dizziness and sickness, such that the bare minimum was done, before getting back to bed to start recovery. In this case, there wasn't any home care available to offer respite during the recovery, so they ended up for a short stay in a care home.
After this, care was organised for two nights a week, offering some respite, but also some guilt, knowing that your loved one is not getting the respite that you are. Having visitors in your home right at the end of the day also means a change to the usual routines.
Being a carer needs you to be strong. It can also be lonely. The strength is needed to change the routines or the medication when you can see that the dis-benefits are significant and don't balance with the benefits. The strength example was a new medication which helped with sleep at night, but also didn't allow for getting things done during the day. The lonely example was the story of having to clean up after not getting to the toilet in time. Some planning is needed so the right things are in the right place at the right time, and a sense of humour and positive attitude are both essential.
The story concludes with a look back from the early days, when trying to get on the Eurostar. Some unsteadiness on the escalator meant they both ended falling over on their way up the escalator. Some other passengers helped to get the upright, but that hadnt stopped their luggage ending up back at the bottom, with no downward escalator. They were taken by the station staff, with their luggage, to the correct point on the platform to get on the train for their seats, and away they went!
Pat described their initial journey with HSP, starting to use, and then making decisions at each stage as the needs change, using more or different walking aids. Additionally, they had an increasing need to plan toilet stops into journeys. The Parkinson's diagnosis came at about the same time as the move towards needing a wheelchair. The combination of HSP and Parkinson's is rare, and this is coming from the perspective that HSP is rare in itself.
The journey towards being a carer is slow, like the journey with HSP and its symptoms. In the early stages you don't consider yourself to be a carer, but as the HSP and the Parkinsons takes away the person that you love, that relationship changes into carer and cared for. As the changes are gradual there isnt a specific point when this switch happens, and that doesn't stop you from loving that person.
There is a large amount of team-work involved in this relationship, and the problems are always the conditions, never the person. Solutions are found which work, and these are developed over time as the symptoms change. At the moment, fatigue is key, with energy levels dropping it is a time to make difficult choices about what to stop doing, and what to keep on doing. Difficult decisions to be made when you enjoy and have passion for doing these things.
As a carer, as the condition changes and the need for caring increases, it is necessary to give up your own interests so that you put your energy into ensuring that your loved one can carry on going for as long as possible.
With two conditions, there is a lot of medication to be taken, over a 17 hour period each day. There are alarms and reminders, and the medication interferes with the lack of energy and the ability to have flexibility in your routine. Money has been spent on modifications have been made at home, with lifts, wet rooms, ramps and wider doors. The caring routine includes helping getting dressed, helping getting in and our of bed, helping going to the toilet and helping transfer to a wheelchair.
A range of different specialists have been seen, including occupational therapists, neuro-physiotherapists, and staff at a MS/Neuro centre. Each has been able to offer their help, but for limited times, and the changes to health conditions mean that it is not possible to get to the centre any longer. There have also been various visits to hospital, A&E, but also advice to avoid going to hospitals if possible. This means a further change in the relationship, from carer, to carer and nurse.
The tricky question is - what happens when something happens to the carer? One incident meant that the caring routine was disrupted by dizziness and sickness, such that the bare minimum was done, before getting back to bed to start recovery. In this case, there wasn't any home care available to offer respite during the recovery, so they ended up for a short stay in a care home.
After this, care was organised for two nights a week, offering some respite, but also some guilt, knowing that your loved one is not getting the respite that you are. Having visitors in your home right at the end of the day also means a change to the usual routines.
Being a carer needs you to be strong. It can also be lonely. The strength is needed to change the routines or the medication when you can see that the dis-benefits are significant and don't balance with the benefits. The strength example was a new medication which helped with sleep at night, but also didn't allow for getting things done during the day. The lonely example was the story of having to clean up after not getting to the toilet in time. Some planning is needed so the right things are in the right place at the right time, and a sense of humour and positive attitude are both essential.
The story concludes with a look back from the early days, when trying to get on the Eurostar. Some unsteadiness on the escalator meant they both ended falling over on their way up the escalator. Some other passengers helped to get the upright, but that hadnt stopped their luggage ending up back at the bottom, with no downward escalator. They were taken by the station staff, with their luggage, to the correct point on the platform to get on the train for their seats, and away they went!
Tuesday, 19 June 2018
UK HSP Group AGM
Last weekend (June 9th) was the AGM of the UK HSP Support Group. The presentations made will cover my next few blog posts.
This blog post covers the AGM, and gives you the behind-the-scenes view of the approach. This AGM was my first as chair of the group, so I was a little nervous about it. I kept having thoughts running through my head - what I have I forgotten to do? who have I forgotten to contact? what will go wrong? Have I done enough preparation?
In the last few months us trustees had been working on several "big ticket" items, and the AGM was the place for those all to come into play. The key items were:
This blog post covers the AGM, and gives you the behind-the-scenes view of the approach. This AGM was my first as chair of the group, so I was a little nervous about it. I kept having thoughts running through my head - what I have I forgotten to do? who have I forgotten to contact? what will go wrong? Have I done enough preparation?
In the last few months us trustees had been working on several "big ticket" items, and the AGM was the place for those all to come into play. The key items were:
- Voting in a new constituion
- Reminding everyone about our data protection policy
The AGM was a success! We passed the threshold for being quorate and were able to vote in the new constitution and elect the trustees for the next period. We agreed the trustee report and accounts, and I was able to thank all the relevant groups of people (members, volunteers, fundraisers and researchers). The new constitution improves the definition around what we do, and allows us to do a few more things, which we need to consider over the coming months. Next step is to get this registered with the Charities Commission.
After the formal part of the AGM we had a set of group discussions. Again, I was a little nervous about how this would work. I had taken part in a set of group discussions at work a few years ago which used the World Cafe style (http://www.theworldcafe.com/key-concepts-resources/world-cafe-method/) and this worked fairly well for sorting out ideas at that time.
I decided that it would be a good idea to seek members views on what else we could be doing as a group, and through conversations with the trustees there were a number of topics which we wanted opinions on (specifically: complex HSP, young people with HSP, their parents and Fund-raising). We added a further two categories to cover other issues, giving six topics in total) My sister had also used this format at her work, and had said that they work well if you have good facilitators to guide the discussion along. I wrote to a range of UK HSP researchers to ask if they or their colleagues would be happy to be facilitators, and fortunately they were!
That had all the key components in place, and the last challenges were working out how to brief the facilitators so that they knew what we were trying to get out of the discussions and how to introduce the method to all our members. I was really pleased when members just got stuck in to the discussions. We had three good rounds of discussions - round 1 identified and prioritised problems, round 2 identified any solutions for the highest priority problems, and round 3 looked to see which of those solutions the group could do.
After the discussions were complete, each of the facilitator gave a summary of the thoughts and findings from their group. I was quite pleased to find that there were a good number of common themes from across the topics, and we'll be using those findings to work out a forward plan at our next trustee meeting.
Wednesday, 30 May 2018
Various leg news and research
I was having a quick look through some of the HSP channels, and there were several articles on a similar theme which caught my attention.
On the US HSP Site - SPFoundation there was a link to this story which says that leg exercise is critical to maintaining brain and nervous system health. Essentially, the maintenance of the nervous system is a two way process, and getting signals from the muscles back to the brain helps to produce new nerve cells, and the converse is that cutting back on such exercise makes it more difficult for the body to produce new cells. The article refers to weight bearing exercises, and that the difficulties in the production of new nerve cells can affect wider functions than muscle control. The research looked at neuromuscular conditions like motor neuron disease. It appears to be a good argument on the "use it or lose it" front.
Article: https://www.sciencedaily.com/releases/2018/05/180523080214.htm
Research paper: https://www.frontiersin.org/articles/10.3389/fnins.2018.00336/full
On the Australian HSP Site - HSPRF there was an article which indicated that people who use virtual reality to improve their balance did better than people who used real-world task-based balance training. The research was done on people with spinal cord injuries rather than those with neuromuscular conditions, so the research may or may not be relevant to those with HSP. This reminded me of the falls study undertaken by Plymouth University last year, and this ties in well with the "use it or lose it" front too.
Article: https://hspersunite.org.au/improving-balance-what-works-better/
Source: http://archive.scijournal.com/doi/10.1310/sci16-00003
I was also looking at the rareomics website for recent papers, and spotted this one on being able to spot differences between gait patterns of HSP, Ataxia and Parkinsons. People with each condition and controls had their gait patterns measured using an optoelectronic motion analysis system. The paper reports that all patients had a reduced range of motion in the ankle joint compared with the controls, and it was possible to differentiate ataxia from HSP and Parkinsons. They were not able to identify factors that differentiated those with HSP.
Article: https://rareomics.healx.io/paper/28967438
Full paper: https://www.sciencedirect.com/science/article/pii/S0167945717300891?via%3Dihub
On the opposite side of the exercise coin is this blog post which tries to answer the question: does physical exercise cause motor neuron disease (MND). The conclusion is that there is a link between physical exercise and MND, However, the additional risk is low (6%) and the authors of the study note that the benefits of physical exercise on things like cardiovascular health far outweight the additional risk of causing MND.
Article: https://mndresearch.blog/2018/05/23/does-physical-activity-cause-mnd-a-fresh-look-at-the-evidence/
On the US HSP Site - SPFoundation there was a link to this story which says that leg exercise is critical to maintaining brain and nervous system health. Essentially, the maintenance of the nervous system is a two way process, and getting signals from the muscles back to the brain helps to produce new nerve cells, and the converse is that cutting back on such exercise makes it more difficult for the body to produce new cells. The article refers to weight bearing exercises, and that the difficulties in the production of new nerve cells can affect wider functions than muscle control. The research looked at neuromuscular conditions like motor neuron disease. It appears to be a good argument on the "use it or lose it" front.
Article: https://www.sciencedaily.com/releases/2018/05/180523080214.htm
Research paper: https://www.frontiersin.org/articles/10.3389/fnins.2018.00336/full
On the Australian HSP Site - HSPRF there was an article which indicated that people who use virtual reality to improve their balance did better than people who used real-world task-based balance training. The research was done on people with spinal cord injuries rather than those with neuromuscular conditions, so the research may or may not be relevant to those with HSP. This reminded me of the falls study undertaken by Plymouth University last year, and this ties in well with the "use it or lose it" front too.
Article: https://hspersunite.org.au/improving-balance-what-works-better/
Source: http://archive.scijournal.com/doi/10.1310/sci16-00003
I was also looking at the rareomics website for recent papers, and spotted this one on being able to spot differences between gait patterns of HSP, Ataxia and Parkinsons. People with each condition and controls had their gait patterns measured using an optoelectronic motion analysis system. The paper reports that all patients had a reduced range of motion in the ankle joint compared with the controls, and it was possible to differentiate ataxia from HSP and Parkinsons. They were not able to identify factors that differentiated those with HSP.
Article: https://rareomics.healx.io/paper/28967438
Full paper: https://www.sciencedirect.com/science/article/pii/S0167945717300891?via%3Dihub
On the opposite side of the exercise coin is this blog post which tries to answer the question: does physical exercise cause motor neuron disease (MND). The conclusion is that there is a link between physical exercise and MND, However, the additional risk is low (6%) and the authors of the study note that the benefits of physical exercise on things like cardiovascular health far outweight the additional risk of causing MND.
Article: https://mndresearch.blog/2018/05/23/does-physical-activity-cause-mnd-a-fresh-look-at-the-evidence/
Saturday, 19 May 2018
NHS apps
You might like to be aware of this page on the NHS website. https://apps.beta.nhs.uk
The page gives lots of apps that you might find useful to help tracking your health. Apps which catch my attention are:
* My health tracker - gives access to a plan for long term health conditions
* Chill factor - improving your wellbeing
* Patients know best - access to your health records
* Silvercloud - stress, anxiety and depression
There are a load of other apps which might be of interest.
The page gives lots of apps that you might find useful to help tracking your health. Apps which catch my attention are:
* My health tracker - gives access to a plan for long term health conditions
* Chill factor - improving your wellbeing
* Patients know best - access to your health records
* Silvercloud - stress, anxiety and depression
There are a load of other apps which might be of interest.
Saturday, 28 April 2018
Stretching Routine
I've been doing my stretches for quite a while now, and I thought that I would share these with you. These stretches were developed over several sessions with my Physiotherapist, having observed how I walk and following discussions about what I find difficult to do. They fit also in well with my other health activities - weekly Pilates, cycling a few times a week and walking around during the day.
I've a picture of me doing each of my stretches, followed by a few notes about each one. These are given in the order that I do these in.
When I do this stretch I focus on keeping both legs as straight as possible, and I try to keep the foot on the floor pointing forward, although of course having it at an angle helps with balance. Reaching forward to touch my toes isn't necessary for the stretch, I use this to measure how much movement I have - some days I can reach my toes, and others I cannot. I do each leg for 20-30s, and then repeat.
For this stretch I have one foot in the same position as part 1, and bring the other foot forward. I aim to keep both heels on the ground, and try to keep the plank for the rear leg and my body, although I also adjust the front knee so that I get a similar stretch on both legs. I do this stretch with each leg forward once for 20-30s.
For this stretch I try to get the second stretch on the part2 calf muscles and on my adductors. This stretch is a squat. I am focusing on keeping my feet parallel, my heels on the ground and my body upright to get the calf stretch, and I focus on keeping my lower leg vertical and my knees far apart to get the adductor stretch. I hold this stretch for 20-30s, and some days I will do this one twice.
For this stretch I focus on keeping my knees close together, and my body upright. I do this once on each leg for 20-30s.
This is how I finish my stretches. It is a move that I learnt at Pilates, and I use it to improve my spine flexibility. The focus is on the spine, so I my knees are slightly bent. Again, I am using the distance between fingers and toes as the measure of the stretch. I've not yet touched my toes! I do three roll downs and hold each one for a few seconds.
I've a picture of me doing each of my stretches, followed by a few notes about each one. These are given in the order that I do these in.
Hamstring Stretch
When I do this stretch I focus on keeping both legs as straight as possible, and I try to keep the foot on the floor pointing forward, although of course having it at an angle helps with balance. Reaching forward to touch my toes isn't necessary for the stretch, I use this to measure how much movement I have - some days I can reach my toes, and others I cannot. I do each leg for 20-30s, and then repeat.
Adductor Stretch
On this stretch I also focus on keeping each leg as straight as possible, and I also try to keep my body upright as well. I find this a bit tricky to get into this position, so I am often using the wall to help. I do each leg for 20-30s. I get my second stretch of these muscles a bit later on.
Calf Stretch - part 1
For this stretch I try to keep my legs straight, and in line with my body, like a plank. I also focus on keeping my heels on the ground to get the stretch. I vary the stretch slightly with the distance between my feet and the wall. This gets both legs done for the first time in one stretch for 20-30s.
Calf Stretch - part 2
For this stretch I have one foot in the same position as part 1, and bring the other foot forward. I aim to keep both heels on the ground, and try to keep the plank for the rear leg and my body, although I also adjust the front knee so that I get a similar stretch on both legs. I do this stretch with each leg forward once for 20-30s.
Calf and Adductor
For this stretch I try to get the second stretch on the part2 calf muscles and on my adductors. This stretch is a squat. I am focusing on keeping my feet parallel, my heels on the ground and my body upright to get the calf stretch, and I focus on keeping my lower leg vertical and my knees far apart to get the adductor stretch. I hold this stretch for 20-30s, and some days I will do this one twice.
Hip Flexors
For this stretch I focus on keeping my knees close together, and my body upright. I do this once on each leg for 20-30s.
Roll-downs
This is how I finish my stretches. It is a move that I learnt at Pilates, and I use it to improve my spine flexibility. The focus is on the spine, so I my knees are slightly bent. Again, I am using the distance between fingers and toes as the measure of the stretch. I've not yet touched my toes! I do three roll downs and hold each one for a few seconds.
Summary
This is a quick overview of my stretches. I generally do these twice a day. Since I have been measuring the time using fitbit I can report that I actually do 10-12 sets of stretches per week, with the most likely omissions being Saturday and Sunday mornings. I count each stretch rather than measure each one with a clock, so the 20-30s is a bit variable. In total my stretches take between about 6 and 11 minutes to do.Sunday, 8 April 2018
Symptoms Update - fall, bike, bed, tired!
This is a quick update on symptoms. Whilst the post title may suggest a single story, these are in fact separate things.
Last year I took part in the Plymouth HSP falls study. Over this time (and in fact before this time) I didnt have any falls. There have been a few moments when it has been close, but I have been able to prevent a fall. The other week I had my first fall, which marks the start of a new symptom to be tracked. I was coming down the stairs at home, wearing socks. About half way down one of my feet either missed or slipped off the step which caused me to fall down. I landed on my bottom, and aside from one toe bumping into the banister/balusters during the landing there was no damage done. I've noted before about using the banister to get up and down stairs, which I do pretty much all of the time (except when carrying). I know that I use the banister less going downstairs, but I think this fall was from going too fast rather than anything else.
Readers may note that some while ago I switched from using normal pedals on my bike to using cleats. As noted this has prevented my feet from sliding all over the pedals, which is a good thing. Recently I've been trying out different muscle groups whilst cycling, and when my muscles are feeling a bit tight from my normal cycling I switch for a short while to putting the power on when i'm pulling my feet up rather than pushing them down. This helps rest those other muscles, and a few minutes later I'll be back to normal.
When in bed these days I'm finding it much more comfortable to sleep on my side with my legs bent a little at the hips and knees. I have mostly slept either like this or laying flat on my back. When laying on my back I'm feeling the tension in my leg muscles, which is not conducive to going to sleep.
Overall, I'm spotting that I'm needing to sit down quicker. I had observed during the Christmas season the need to sit down later in the evening, but I am now beginning to spot that symptom earlier in the day as well. Once I've sat for a short while I'm then able to get back up and carry on. This is most likely the spasticity of my muscles, but as this happens more when I am tired, it may also be a bit of fatigue creeping in.
Taking all this into account, I kind of realise that I'm unlikely to be able to manage spending the day walking 20-25km in the Lake District any more, which is a bit of a shame. I am though, still going out for various longer bike rides at the weekends, which is a good way to test how tired i'm getting. I notice that it is my legs which get tired well before the rest of my body gets tired, and fitbit tells me that my heat rate very rarely gets into the peak zone. I've recently worked out how to get heart rate from fitbit into strava, so there's a new dataset to look at as well.
Last year I took part in the Plymouth HSP falls study. Over this time (and in fact before this time) I didnt have any falls. There have been a few moments when it has been close, but I have been able to prevent a fall. The other week I had my first fall, which marks the start of a new symptom to be tracked. I was coming down the stairs at home, wearing socks. About half way down one of my feet either missed or slipped off the step which caused me to fall down. I landed on my bottom, and aside from one toe bumping into the banister/balusters during the landing there was no damage done. I've noted before about using the banister to get up and down stairs, which I do pretty much all of the time (except when carrying). I know that I use the banister less going downstairs, but I think this fall was from going too fast rather than anything else.
Readers may note that some while ago I switched from using normal pedals on my bike to using cleats. As noted this has prevented my feet from sliding all over the pedals, which is a good thing. Recently I've been trying out different muscle groups whilst cycling, and when my muscles are feeling a bit tight from my normal cycling I switch for a short while to putting the power on when i'm pulling my feet up rather than pushing them down. This helps rest those other muscles, and a few minutes later I'll be back to normal.
When in bed these days I'm finding it much more comfortable to sleep on my side with my legs bent a little at the hips and knees. I have mostly slept either like this or laying flat on my back. When laying on my back I'm feeling the tension in my leg muscles, which is not conducive to going to sleep.
Overall, I'm spotting that I'm needing to sit down quicker. I had observed during the Christmas season the need to sit down later in the evening, but I am now beginning to spot that symptom earlier in the day as well. Once I've sat for a short while I'm then able to get back up and carry on. This is most likely the spasticity of my muscles, but as this happens more when I am tired, it may also be a bit of fatigue creeping in.
Taking all this into account, I kind of realise that I'm unlikely to be able to manage spending the day walking 20-25km in the Lake District any more, which is a bit of a shame. I am though, still going out for various longer bike rides at the weekends, which is a good way to test how tired i'm getting. I notice that it is my legs which get tired well before the rest of my body gets tired, and fitbit tells me that my heat rate very rarely gets into the peak zone. I've recently worked out how to get heart rate from fitbit into strava, so there's a new dataset to look at as well.
Thursday, 29 March 2018
A little bit of family history
I was chatting with my mum over the Christmas holidays and we had a look at the family tree to see if there was any other evidence of HSP.
We know that the HSP comes from my mums mum - she was diagnosed. My mums mum was the youngest of 10 children in her family, being some 20 years younger than her eldest sibling. Also, my mum was the youngest of three children, and she didn't get to meet either of her mums parents.
When my mum remembers her aunts and uncles on that side of the family she is sure that there were two uncles with HSP, all living in the same village as her and her mum. It is interesting to note that these uncles were builders, and they were able to work for the family builders, with some allowances made for difficulties getting up and down ladders. Of the children of these uncles, HSP doesn't seem to have come down to the next generation. There are also four aunts and uncles who definitely didn't have HSP, and three that my mum is not sure about.
So, since there are several siblings with HSP, it must have arrived with one of my great-grandparents from that side of the family, but at the moment we don't know who. If there are people in the UK with HSP who trace their family trees back to the late 1800's then get in touch - we may be able to work this out, and could be related!
My two great-grandparents are both from Cambridgeshire:
George Goodchild - 1 mar 1871 - 15 jun 1946
Anne Harding - 17 jun 1872 - 28 jul 1940
We know that the HSP comes from my mums mum - she was diagnosed. My mums mum was the youngest of 10 children in her family, being some 20 years younger than her eldest sibling. Also, my mum was the youngest of three children, and she didn't get to meet either of her mums parents.
When my mum remembers her aunts and uncles on that side of the family she is sure that there were two uncles with HSP, all living in the same village as her and her mum. It is interesting to note that these uncles were builders, and they were able to work for the family builders, with some allowances made for difficulties getting up and down ladders. Of the children of these uncles, HSP doesn't seem to have come down to the next generation. There are also four aunts and uncles who definitely didn't have HSP, and three that my mum is not sure about.
So, since there are several siblings with HSP, it must have arrived with one of my great-grandparents from that side of the family, but at the moment we don't know who. If there are people in the UK with HSP who trace their family trees back to the late 1800's then get in touch - we may be able to work this out, and could be related!
My two great-grandparents are both from Cambridgeshire:
George Goodchild - 1 mar 1871 - 15 jun 1946
Anne Harding - 17 jun 1872 - 28 jul 1940
Saturday, 24 March 2018
Living with the enemy
At the HSP Support Group AGM in 2017 Robin Pajmans recommended the book "Living with the Enemy", by Ray Owen. I got this from my library to read. I found that there were a load of useful things in this. This post is a review of the book with a few points that I found useful from each chapter.
Overall the book covers several approaches for coping with the stress of a chronic condition or long term condition. It uses Cognitive Behavioural Therapy (CBT), Mindfulness and acceptance, and Acceptance Commitment Therapy (ACT).
The first chapter "knowing the enemy" is about understanding what people are dealing with in the case of a chronic condition. Whatever coping strategy is adopted, it cannot depend on finding a cure or a solution which sends all the symptoms away. With a chronic or long term condition these are not possible. It is better to avoid being in a fight with your condition.
The second chapter "getting stuck in the struggle" describes that having a long term condition (LTC) can have a huge impact on people, physically, practically and psychologically. When in a stressful situation our natural response is either to fight or flight - both of these can be difficult with an LTC. If you are the type of person who urges to control, but your LTC is uncontrollable, it can set into unhelpful thinking patterns. The urge not to feel bad is strong, and many take the choice to miss out on things to do this - but the consequence of this is a more narrow life, missing out on things you enjoy. If you supress unwanted thoughts they will often reoccur. This chapter introduced me to the "hot cross bun model" which differentiates out what is a thought, a feeling, a behaviour and a physical symptom - and identifies which of these are in your control, and which are not.
Chapter 3, "troubling thoughts" identifies that having troubling thoughts can cause additional problems on top of an LTC. Some of those troubling thoughts are likely to be incorrect or at least distorted. Those who get caught up in such thoughts often stop noticing what is real. The chapter introduces setting up 'rules of thumb' to assess situations by and having a period of "worry time" each day to help resolve troubling thoughts.
Chapter 4, "unwanted feelings," moves on to starting to accept the presence of unwanted thoughts. If you can accept some of these thoughts being in your mind, even if you dont like them, then you can avoid making them the centre of attention and free up your mind to do something more useful!
Chapter 5, "living in the present", notes that the mind tends to wander during the day, sometimes looking at the past, at the future or other places. Whilst the mind wanders of its own accord, if you get lost in unwanted thoughts this isn't a happy place to be and by not paying attention to the present you miss out on what is happening in the here and now. The chapter introduces present moment awareness and mindfulness as techniques to help you focus on the present moment.
Chapter 6, "who am I now? a sense of self" separates out you as a person from the LTC that you have. It is the condition that is the burden, not you. The chapter sets out the concept of accepting the present and mourning the past. If you get stuck in a set story about yourself, the changing nature of an LTC means that this has potential to end up focusing on your limitations rather than your abilities.
Chapter 7, "living with purpose" sets out a method for working out your personal goals and purpose, but in the framework of LTCs being able to get in the way of some of your important goals. Knowing your values can help set your direction and give your life a better sense of purpose/fulfilment. It is important to note that goals are not the same as values. Once you know your values you can make sure that you not continually neglecting any of these.
Chapter 8, "taking action", has the central premise that you need action in order to make a change. Base your actions on your values, choose goals that will matter to you personally, and make sure that they are smart (specific, measurable, achievable, relevant, time-bound). Note that you cannot change the behaviour of other people (but you can influence it).
Chapter 9 "putting it together" gives example action statements to make as a commitment: "I will do [action] in service of [value] and am willing to experience [unwanted thought/feeling] if that is what it takes".
If you wanted to buy a copy of this, it is available from Amazon, and of course other bookshops and libraries are available! https://www.amazon.co.uk/Living-Enemy-chronic-mindfulness-acceptance/dp/0415521203
Regular readers of this blog will note that I've covered similar things like this before:
CBT: https://hspjourney.blogspot.co.uk/2014/04/stress-and-mood-management.html
Values: https://hspjourney.blogspot.co.uk/2016/01/depression-and-assessing-yourself.html
It also reminded me of Stephen Covey's Seven Habits of Highly Effective People, in which there si much more on values, prioritising tasks and focusing on what is important.
Overall the book covers several approaches for coping with the stress of a chronic condition or long term condition. It uses Cognitive Behavioural Therapy (CBT), Mindfulness and acceptance, and Acceptance Commitment Therapy (ACT).
The first chapter "knowing the enemy" is about understanding what people are dealing with in the case of a chronic condition. Whatever coping strategy is adopted, it cannot depend on finding a cure or a solution which sends all the symptoms away. With a chronic or long term condition these are not possible. It is better to avoid being in a fight with your condition.
The second chapter "getting stuck in the struggle" describes that having a long term condition (LTC) can have a huge impact on people, physically, practically and psychologically. When in a stressful situation our natural response is either to fight or flight - both of these can be difficult with an LTC. If you are the type of person who urges to control, but your LTC is uncontrollable, it can set into unhelpful thinking patterns. The urge not to feel bad is strong, and many take the choice to miss out on things to do this - but the consequence of this is a more narrow life, missing out on things you enjoy. If you supress unwanted thoughts they will often reoccur. This chapter introduced me to the "hot cross bun model" which differentiates out what is a thought, a feeling, a behaviour and a physical symptom - and identifies which of these are in your control, and which are not.
Chapter 3, "troubling thoughts" identifies that having troubling thoughts can cause additional problems on top of an LTC. Some of those troubling thoughts are likely to be incorrect or at least distorted. Those who get caught up in such thoughts often stop noticing what is real. The chapter introduces setting up 'rules of thumb' to assess situations by and having a period of "worry time" each day to help resolve troubling thoughts.
Chapter 4, "unwanted feelings," moves on to starting to accept the presence of unwanted thoughts. If you can accept some of these thoughts being in your mind, even if you dont like them, then you can avoid making them the centre of attention and free up your mind to do something more useful!
Chapter 5, "living in the present", notes that the mind tends to wander during the day, sometimes looking at the past, at the future or other places. Whilst the mind wanders of its own accord, if you get lost in unwanted thoughts this isn't a happy place to be and by not paying attention to the present you miss out on what is happening in the here and now. The chapter introduces present moment awareness and mindfulness as techniques to help you focus on the present moment.
Chapter 6, "who am I now? a sense of self" separates out you as a person from the LTC that you have. It is the condition that is the burden, not you. The chapter sets out the concept of accepting the present and mourning the past. If you get stuck in a set story about yourself, the changing nature of an LTC means that this has potential to end up focusing on your limitations rather than your abilities.
Chapter 7, "living with purpose" sets out a method for working out your personal goals and purpose, but in the framework of LTCs being able to get in the way of some of your important goals. Knowing your values can help set your direction and give your life a better sense of purpose/fulfilment. It is important to note that goals are not the same as values. Once you know your values you can make sure that you not continually neglecting any of these.
Chapter 8, "taking action", has the central premise that you need action in order to make a change. Base your actions on your values, choose goals that will matter to you personally, and make sure that they are smart (specific, measurable, achievable, relevant, time-bound). Note that you cannot change the behaviour of other people (but you can influence it).
Chapter 9 "putting it together" gives example action statements to make as a commitment: "I will do [action] in service of [value] and am willing to experience [unwanted thought/feeling] if that is what it takes".
If you wanted to buy a copy of this, it is available from Amazon, and of course other bookshops and libraries are available! https://www.amazon.co.uk/Living-Enemy-chronic-mindfulness-acceptance/dp/0415521203
Regular readers of this blog will note that I've covered similar things like this before:
CBT: https://hspjourney.blogspot.co.uk/2014/04/stress-and-mood-management.html
Values: https://hspjourney.blogspot.co.uk/2016/01/depression-and-assessing-yourself.html
It also reminded me of Stephen Covey's Seven Habits of Highly Effective People, in which there si much more on values, prioritising tasks and focusing on what is important.
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