2023 AGM: Compassion Therapy

My other November post covers the second of the two September presentations made for the support groups AGM. Hannah Gilbert talked about compassion therapy, and how these approaches could help people with HSP. This is also available on YouTube, should you wish to watch.

https://www.youtube.com/watch?v=3X5recS_guY 

Compassion and Compassion Therapy

Hannah started off with an introduction of compassion, describing it as the motivation to address suffering. The key steps in this approach are:

• The first step is recognising that suffering happens
• Suffering can be experienced by anybody, for many reasons - it has a universal characteristic
• Compassion involves having sympathy and/or empathy for suffering
• Distress from suffering happens, and this needs to be tolerated
• Essentially compassionate behaviour is motivation to act to alleviate the distress and suffering

Compassion focussed therapy boils down to two key elements - you need to understand situations, and approach or engage with that suffering - requiring courage. Then you need to work towards alleviating that suffering - requiring dedication and wisdom.

Over thousands of year humans have evolved to have a sensitive system which allows us to notice suffering in in our environment, and to respond to that. These responses are our minds organising themselves to change our behaviours to address the suffering. Compassion therapy is about developing these qualities.

All mammals care for their young, and that care increases the chance of survival for the young. Bodies are equipped with nerves, and endorphins (etc) are produced in response to situations which change behaviours. Humans are different from other animals as we are sentient and are aware of situations from the perspective of others. We know that there is a difference between pain/suffering and our reactions to that pain/suffering. Compassion can help address both sides of this.

It is not your fault

Many people carry a lot of shame/guilt/disappointment about the situation they are in. But, a lot of what we experience is not our fault. We do not choose the bodies we live in, we do not choose what we have inherited from our family, and we do not choose much of the environment that we develop and live in.

Also, the society that we live in has particular societal norms. In the age of social media many of the portrayals of the social norms are not real. We can often find ourselves not matching these norms, and that can lead to a sense of shame or loss of dignity.

If you are in this situation it may be beneficial to take a step back and look at the bigger picture. You should not blame yourself for things out of your control. When looking at the bigger picture, it is important to realise that not all things can be fixed. The trick is to focus on what can be done.

Emotions and their regulation

There are three basic systems in the body for emotions and their regulation.

Most obviously, we are very good at responding the threats. The responses of anxiety or anger are automatic to threats, and these are us seeking safety or protection. Of course, society has changed a lot since these responses evolved - we are currently less likely to be the prey of a carnivore!

The next system is our drive system. This is about finding resources, wanting and pursuing things. Similar to the threat system, our responses are around taking action to doing more.

The third system is the soothing system. This system regulates the other two systems, and involves things like resting and digesting resulting in feeling safe. Associated with this is kindness, which you can get either from others or from yourself.

In theory these three systems should balance out each other. However, the threat system can dominate over the other two such that they only play a negligible role. Staying in the threat zone can lead to disappointment dominating other feelings. It is important to note that ways of thinking can keep people in this threat zone even after the triggering threat has subsided. One solution to this is to try to access the soothing system.

Difficult Emotions

There are three emotions that can be particularly difficult to deal with - Anger, Anxiety and Sadness. However, the responses to each are similar, and it can be helpful to think about how you respond when you experience these emotions, and these thoughts can be developed into a motivation to reduce them. The initial thoughts are probably not very helpful.

• Where is your attention focussed when you experience these?
• What are you thinking about when you experience these?
• What is your body doing?
• What actions do you want to take?
• Which memories are you thinking about?

These lead onto the final question to think about - what helps you to settle? The aim is not to push the feelings away, but to consider what would help you to settle.

If you experience these emotions a lot it can lead to long term negative thoughts, including avoidance and denial.

Using Compassion

As noted, motives help organise the mind into action, and compassion is encouraging car based motives. The two key elements are:

• Using the body to support the mind - this could be through meditation, mindfulness, breathing, diet, exercise, and so on.
• Choosing a quality to develop - this could be around learning, playfulness, joy, friendliness, having positive thoughts, having helpful behaviours, and so on.

Self compassion is like a muscle, the more that you practice it, the stronger and more resilient the behaviours become. Begin by thinking - how can I be helpful to myself.

2023 AGM - Choosing Mobility Aids

I realise that this post is somewhat later than previous years. There's been a lot going on. One of the presentations given at our AGM this year was "Mobility Aids - Getting it right can be life changing!", presented by Ian Bennett. Ian is one of our group members, and was chair before me. He has plenty of experience talking to people about their mobility and mobility aids, and we took the chance to ask him to present his thoughts on this.

You can watch this here: https://www.youtube.com/watch?v=0MhAzE5SMCI

Ian started out giving his background and context for talking to the group. Ian is a firm believer in the "use it or lose it" camp with mobility. The start point of his talk is not that everyone should get a wheelchair, but that people should make the right choices for their situation. He notes that for people who are recently diagnosed the information in his talk is there for awareness and planning for future needs.

Over the years Ian has noted that there are plenty of people who have pride or fear which prevents them from starting their journey with mobility aids. This psychological side can be powerful given frequent societal negatives around wheelchair use. His important comment is that on the whole once people begin their journeys with aids they frequently say "I wish I'd done this years ago". As mobility changes with HSP it can feel difficult to get outside, which Ian notes is not very good for peoples mental health. Getting out and about can be lifechanging.

FES

The first aid covered was FES, or functional electrical stimulation. This uses pads placed on your legs and electric charges are sent to the pads to stimulate the muscles. Stimulating the muscles with FES can reduce foot drop or feet dragging on the ground, and can improve the amount that knees are bought up. Ian noted that when he used FES it was able to make his walking easier, and allowed him to extend his range. Many people get on OK with FES. There are a small group of people who dont get on with it, and a similar small group for whom it works brilliantly. If you are offered this, it is worth a try.

Walking Sticks

There are many different types of walking sticks to choose from, and you can find one which matches your personality/character - seek out the shape, size, material and colour which you like. You can feel more positive about sticks if you like what you're going to use. Another point mentioned was ferrules. The ferrule is the "foot" at the bottom of the stick which makes contact with the ground. Ian noted that many with HSP like Flexyfoot ferrules, which help improve grip and are versatile over many types of ground.

People wonder if they should use one stick or two. If you are becoming more reliant on your sticks, it might be better to use two sticks. Staking with one stick can lead to problems if you're transferring weight more onto one side of the body.

Which Order?

There is no 'correct' order for mobility aids. Different people use different aids at different times. Many people start with sticks and then progress onto other aids. Some people will use rollators, and some people will use chairs/scooters. The choice of aid will also depend on the circumstances - what you're trying to do and where you are doing that.

Rollators

A rollator is a frame on wheels which allows you to help keep your balance. They generally come in three or four wheel versions. The three wheel versions have a central front wheel, whereas the four wheel versions have a pair of wheels each side. Many rollators come with a seat which can help with fatigue or tiredness.

Aother factor worth considering is the positioning of the wheels relative to where you walk. Some rollators are always in front of you, whereas the rear wheels extend behind you in other types. The choice of numbers and positioning of wheels can affect your stability whilst using these, and it is important to think about what you're using the rollator for.

Mobility Scooters

Choosing to get a mobility scooter can be a big decision. Getting the correct choice can make a big positive benefit to you. It is important to research what you need your scooter for before you decide. Common types are:

• Small folding scooter - can be used indoors or while travelling, but the smaller battery can limit the range. Can be folded up and put in a car.
• Pavement scooter - can be used for shopping or walks. Can be disassembled, and lifted/hoisted into a car.
• Road legal scooter - can be used on roads (up to 8mph) or pavements (up to 4mph), with a potential range up to 30 miles. These cannot be put in a car, and a heavy.

It is important to maintain the battery on scooters, so regular use is best, and regular charging is needed in you are not using the scooter regularly. 

Wheelchairs

When you are getting a wheelchair, the first step is similar to that for mobility scooters - you should determine your needs. Once you know your needs the choice of a chair becomes more straightforward. Thoughts on needs should cover:

• What activities you want to do when using the chair
• How often/how long do you think you will use the chair for
• Will you be using the chair indoors or outdoors
• Do you have any other physical limitations which you will need to take into account
• Will you be using the chair independently or with assistance

The answers to these questions will help decide the type that will suit to best. These questions can help you make reasoned decisions on things like the turning circle of the chair, the seat height, and the size and type of the wheels/tyres.

There are four basic types of chair available:

• Transit chair: this is pushed by another person, and is often used indoors for short term use
• Manual chair: can be independently used or pushed by another, and often fold flat for storage/transport
• Active chair: similar to manual, but with a rigid frame instead of folding. More manoeuvrable than manual chairs
• Power chair: has battery electric motor controlled by a joystick. Easier to manoeuvre and possibly more comfortable.

You will need to get a chair which is the right size and right fit for you. You can also consider accessories at the same time, things like the type of cushion, anti-tipping devices, trays and bag holders. Getting the right chair can help you live life to the fullest.

For many manual/active chairs you could also get a powered add-on drive. This is an electrically powered front wheel which clips on the front of the chair, raising the castors off the ground. The powered wheel can greatly increase range and the level of fun. There are other products which are like a cross between a power chair and a mobility scooter, meaning there are various ways of bridging the gap between these two.

Positivity

Fight the fear. Fight the pride. Dont let the fear of mobility aids prevent you from living your life to the fullest.