Updated advice from Association of British Neurologists

OK, So I didnt expect Coronavirus when I was thinking about what I might be blogging about so much in 2020, but I guess with hindsight it was obvious.

In other news - the UK HSP Support Group successfully held its first virtual trustee meeting at the weekend. Coronavirus has also caused me to take my focus away from publicising the results of my 2019 survey (https://hspjourney.blogspot.com/2020/02/2019-survey-results.html)

The latest advice from the Association of British Neurologists can be found on their website: https://www.theabn.org/page/COVID-19 - clicking the patient advice link doesnt yet have anything on HSP, and readers are referred to the doctor/carer advice: https://cdn.ymaws.com/www.theabn.org/resource/collection/65C334C7-30FA-45DB-93AA-74B3A3A20293/ABN_Neurology_COVID-19_Guidance_v6_9.4.20_FP.pdf

I have summarised what I consider to be the key points from this advice below, and have discussed this briefly with two UK HSP specialists. My own views/comments are italicised, and text from the ABN guidance is not italicised. Because HSP is such a broad set of conditions it is difficult to draw conclusions which apply to everyone with HSP.

Conclusions

This is where I try to draw together the advice below into something short:

• Mild HSP by itself does not put you in a vulnerable group or a high risk group
• HSP is judged to have a Low or Moderate risk associated with Covid-19
• Risk is increased with age, weight, frailty and disability
• Risk is increased with symptoms (HSP or other) affecting lungs, heart, kidneys etc
• Social distancing is recommended

Those with significant HSP are more likely to be considered moderate risk. Those with complex HSP where symptoms include issues swallowing (due to risk of aspiration pneumonia) are more likely to be considered moderate risk. Those with mild HSP (complex or non-complex) are likely to remain as low risk. 

Significance can take into account loss of mobility. Use of one walking stick is unlikely to be significant. Very restricted mobility (e.g. predominant use of wheelchair or in some cases use of two walking sticks) is likely to be significant as this can lead to increased risk on heart/lung function from being sedentary. 

Reminder: Non-complex HSP tends to affect only legs, bladder and/or back, often with fatigue and/or pain - this includes SPG4, SPG3A, SPG5 and SPG31. Complex or complicated HSP may also include symptoms affecting balance/co-ordination, learning/memory, swallowing, speech, vision, hearing. This includes SPG11, SPG15, SPG7 and SPG35. Note that some types of HSP can be either complex or non-complex for some people.

Guidance Introduction

• Although some neurological conditions or treatments increase the risk of complicated COVID-19, most patients in these groups will overcome the infection.
• COVID-19 is a disease caused by a new coronavirus that affects the lungs and airways. It is a new virus, so nobody has immunity to it. The entire population is therefore at risk of catching it.
• It is estimated that as many as 80% of people who catch the virus may experience relatively mild or no symptoms but are able to pass on the infection to others.
• People aged over 70, with long-term conditions or a weakened immune system are at risk of developing complications of the infection.
• Social distancing reduces the risk of catching COVID-19, but self-isolation is the most effective means of avoiding infection.

Risk Assessment - highest risk group

Six clinical high risk groups have been identified by NHS England: 

1. Solid organ transplant recipients 
2. People with specific cancers and people who have had bone marrow or stem cell transplants in the last 6 months, or who are still taking immunosuppressive drugs 
3. People with severe respiratory conditions including all cystic fibrosis, severe asthma and severe COPD.  
4. People with rare diseases and inborn errors of metabolism that significantly increase the risk of infections (such as SCID, homozygous sickle cell). 
5. People on immunosuppressive therapies sufficient to significantly increase risk of infection.
6. Pregnant women with significant heart disease, congenital or acquired 

Readers will note that HSP by itself does not have severe respiratory symptoms or give rise to inborn errors of metabolism. Therefore, HSP does not feature in this highest risk group list.

Risk Assessment - vulnerable people

People who are not in this highest risk group are vulnerable if they are:

• aged 70 or older (regardless of medical conditions) 
• aged under 70 and with: chronic respiratory diseases, chronic heart disease, chronic kidney disease or chronic liver disease
• aged under 70 and with chronic neurological conditions, such as Parkinson’s disease 
• aged under 70 and with problems with your spleen
• aged under 70 and with a weakened immune system as the result of conditions such as HIV and AIDS, or medicines such as steroid tablets or chemotherapy 
• aged under 70 and being seriously overweight (a BMI of 40 or above) 
• aged under 70 and who are pregnant

This advice is slightly different from that in earlier versions. Motor Neuron disease was on previous lists and it is noted as being incorrectly placed on the list. Seriously overweight has been added to the list. HSP is a less severe type of motor neuron disease, indicating that HSP by itself does not automatically put you in the vulnerable category. In this list chronic is taken to be long-term.

Patients with conditions that do not affect their swallowing or breathing muscles and in whom the immune system is working normally are not considered to be at increased risk from COVID-19. 

Milder or moderate forms of many of the commoner neurological disorders, such as Parkinson’s disease, multiple sclerosis, epilepsy are not currently considered to confer increased risk, so long as breathing and swallowing muscles are functioning well.

Most of the conditions or treatments that increase susceptibility to COVID-19 suppress the immune system. Additionally, since COVID-19 is a disease of the lungs and airways, any condition that has affected swallowing or breathing might increase the severity of COVID-19 infection.

There is a multi-stage process currently being undertaken in the UK to identify people in the high risk grouping which involves looking at hospital and GP records, both with automatic trawls and hospital specialist/GP manual input.    

A list of medication which suppresses the immune system is given in the document. The medication usually prescribed for HSP (spasticity, bladder, pain, depression) do not feature in this table.

Risk Assessment - specific for neurological conditions

The risk for neurological conditions has been subdivided into three levels; low, moderate, and high.

• HSP is identified as having a Moderate or Low risk. 

HSP by itself does not render a patient susceptible to infection, however disability or the presence of co-morbidities increase the risk from COVID-19.

Most patients in the high-risk groups are not expected to suffer severe complications of the virus.

Social distancing is recommended for all people with any neurological condition, their carers and family. Shielding (self-isolation) is only recommended for people in the high risk category.

People with a neurological condition with low or moderate risk might be considered high risk if they have additional risk associated with other conditions affecting the lungs, heart, kidneys etc. 

Frailty is a risk factor for a poor response to treatment for COVID-19. People with neurological conditions resulting in frailty, or who are frail as a result of age or other conditions are at increased risk from COVID-19. 

Risk Assessment - comparison with other neurological conditions

Looking at how other conditions similar to HSP are rated:

• Multiple Sclerosis is rated moderate or high
• X-linked Muscular Dystrophy is rated high
• Motor Neuron Disease is rated high
• Cerebral Palsy is rated low
• Movement disorders e.g. Parkinsons are rated low, moderate or high 
• Ataxia is rated low, moderate or high

Lockdown exercise advice from HSPRF

The Australian group HSPRF have put this up on Facebook this morning, with some useful advice on exercises you could do indoors.
https://www.facebook.com/HSPResearchFoundation/posts/3158022867565219

EXERCISING WITH SOCIAL RESTRICTIONS

Many people with HSP have routines of regular exercise and movement, such as at the gym or at the physio, the pool or the park. If the current restrictions on moving around, gatherings of people, social distancing or shutdowns have disrupted your regular exercise routine, all is not lost, although it may take some imagination and creativity to establish a good alternative or two.

Whilst it can be difficult to reproduce some exercises that employ weights or equipment, using one’s own body weight and the forces of nature, namely gravity, can be employed to good effect to get a workout.

Push-Ups

Push-ups can be done in a whole range of ways:

1. from a standing push-up (or push off) leaning against a wall, to a
2. more demanding push-up using a railing, table or bench for example, to
3. push-ups on the floor keeping the belly or knees or just the feet on the floor depending on your capability https://www.youtube.com/watch?v=Pkj8LLRsoDw to
4. even more demanding yet, alternately raising one arm and the diagonally opposite leg in the “up” position of the push-up https://www.youtube.com/watch?v=w2vtX1mD0TA. This improves core strength and stability. Here is an easier version that also works on the core https://www.youtube.com/watch?v=uofd3HJWrWg.

Sitting and Standing

Sitting on a firm chair or bench that is high enough to have your knees and hips at roughly the same height, bring your arms up in front of you and slowly come up to a standing position, avoiding using your hands or arms to push off or to help with momentum if possible. In a slow and controlled manner, return to the sitting position. This return movement of controlled sitting from standing is at least as important in getting benefit from the exercise as the initial movement of standing from sitting. 3 sets of 10 repetitions per set is good, however just do what you can to start with while maintaining posture and control – then build up over time. This movement is equivalent to a 1/2 squat. YouTube video https://www.youtube.com/watch?v=5yxfzyzEzBY

Do not try this from a slumpy couch. If you are unable to stand from sitting on a firm chair, you could try the same movement from a stool or other form of higher seat. Or you could do a partial squat from standing, with good control and slow movement on both the way down and the way back to fully upright. This might start as a 1/8 squat and progress to a 1/4 squat as you improve. YouTube video https://www.youtube.com/watch?v=01pCqfW9v4c

Duration stretching

Duration stretching can provide enormous benefit to mobility and quality of life. Six high load daily exercises of 15 minutes cumulative duration each make up the program. They can be done in front of TV, so if you watch 90 minutes of TV a day, or there is a movie you have been wanting to see, now you can kill two birds with one stone. Here is the link to the duration stretching program: https://hspersunite.org.au/daily-duration-stretching-pays-…/

The Shower or Bath ‘Dance'

Either standing (Shower Dance) or sitting on the floor (Bath Dance) the idea is to do the exact same movements (dry and clothed in your living room) that you would do washing yourself in the shower or bath and drying yourself afterwards… You can even use the towel! We achieve a good range of motion and more exercise than you might think when we shower and bathe. You can do it to music, hum along or entertain yourself with your own singing. Just do what you would normally do and are capable of when actually showering or bathing.

Using exercise equipment

Many people have some exercise equipment at home – exercise/gym balls, maybe some hand weights (those packets of rice or flour or cans of fruit can double as weights) an exercise bike or treadmill, or elastic resistance bands.

Outdoor exercise

For many people, it is still okay to leave your home to get some exercise. Where possible, it is important to take advantage of this, not just to exercise, but to boost spirits and help maintain a positive outlook.

Check out more Bowflex workouts here: https://goo.gl/jkjFMm If you're a person who thinks there is no way you could do a single push-up, we are here to tell ...