A positive from coronavirus

I have just put a post on LinkedIn - a positive from coronavirus - new flexible working practices may help those with disabilities back into the workplace - https://www.linkedin.com/pulse/positive-from-coronavirus-adam-lawrence/

If you're not on LinkedIn, the post is:

I have observed in recent weeks the rapid increase in the proportion of people continuing to work in their usual jobs, but at home. There are many types of people who, during the coronavirus crisis, are being obliged by the government to work at home and avoid unnecessary travel, and employers are doing all they can to make this happen. Many of these people are in roles that would not normally have been considered for home working. Boundaries are being pushed, employees are being trusted to work in new ways and new locations. Technology is being exploited in innovative ways to enable this impressive change.

Look at the perspective a few months before this crisis. There are a fair number of people with both disabilities and important skills that are in demand in the workplace. They have been unable to get work because there were perceptions and attitudes that the role could not successfully be fulfilled in a different way or in a different location.

I think attitudes around working at home are changing. Once the COVID-19 crisis has passed and people head back towards a more normal society, will employers remember this perspective change? There are many roles which can be successfully filled by people who do not come into the workplace, who use technology, and who manage their own time in their own places to effectively deliver work.

Having a disability can be an isolating experience. When people are unable to find purpose in their lives or contribute to society, this can negatively impact their wellbeing and quality of life. Employment is one way of getting a purpose and making contributions to society.

I hope that people with useful skills, currently unable to work because of their disability or situation, embrace the perspective change and have the confidence to seek reemployment. Such candidates could ask potential employers: “was this role successfully undertaken by a home-worker during the COVID-19 crisis?” More things are possible. More can be achieved. There will be many opportunities as society fully engages with this new more inclusive, more effective world.

HSP and Coronavirus / COVID-19

Mon 23rd March

Update from the Association of British Neurologists - Version 2, 22nd March:

"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."

"Experts ..... have attempted to estimate the risk associated with COVID-19 from each neurological condition......  It is difficult to accurately assess risk for every condition. The risk has been subdivided into three levels; low, moderate, and high."

"We recommend social distancing for all people with any neurological condition, their carers and family. We recommend self-isolation only 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."

Table G in the advice puts HSP in the Low/Medium risk category.

View the full advice here: https://www.theabn.org/news/495261/ABN-Guidance-on-COVID-19-for-people-with-neurological-conditions.htm

Sat 21st March

OK, there's no getting away from it, Covid-19 is a big issue. Some readers will know that I am also chair of the UK HSP Support Group. I wrote to our members this week to advise them that we have postponed or cancelled group meetings for the next few months. We made this decision based on two factors: the UK Government advice around social distancing and minimising non-essential travel, and that those with underlying health conditions are at a higher risk of developing severe problems if they become infected.

I have spotted several people asking questions about HSP and Covid-19, so this post sets out the various information I have found and puts my perspective on it. Readers must remember that I am NOT a medical professional.

The UK advice is here: https://www.gov.uk/government/publications/covid-19-guidance-on-social-distancing-and-for-vulnerable-people/guidance-on-social-distancing-for-everyone-in-the-uk-and-protecting-older-people-and-vulnerable-adults

Those in the higher risk groups (relevant to HSP) are:

• Those aged 70 or older (regardless of medical conditions)
• Those under 70 with an underlying health condition (ie anyone instructed to get a flu jab as an adult each year on medical grounds)
• Those with chronic neurological conditions, such as Parkinson’s disease, motor neurone disease, multiple sclerosis (MS), a learning disability or cerebral palsy

HSP is a neurological condition. What is not said is how you would determine if your HSP is chronic or not. It is my view that if you are able to carry on your life like any other member of society then your HSP is not chronic. If you spend most of your time in a wheelchair then your HSP is chronic. There is a scale between these two extremes, and whilst it is (to some degree) a choice if you consider your HSP to be chronic, my view is:

• Constant/near-constant use of frames/chairs - more likely to be chronic
• Frequently affected by pain from HSP - more likely to be chronic
• Frequently affected by fatigue from HSP - more likely to be chronic
• HSP affecting cognition/speech/swallowing (etc.) - more likely to be chronic
• Feet/legs swelling up or sores/skin issues from HSP - more likely to be chronic
• Use of catheter - more likely to be chronic
• Significantly affected by stress/depression - more likely to be chronic
• Regular falls/significant balance problems - more likely to be chronic

You should note that this is just my view. If you have just one of these then you may not consider your HSP to be chronic, but if you have more than one then I think it probably is. It was quite a challenge to decide which of the HSP symptoms to include in this list.

The risk of severe problems if infected increases when you have multiple conditions. Covid-19 is a respiratory virus, so if you live with HSP and Asthma or another respiratory condition then you are more likely to be in the higher risk group. Cardiovascular disease was shown in China data to be the underlying condition resulting in the most deaths (link below). Guidance from NHS indicates that factors which make you more likely to suffer from cardiovascular problems are; inactivity, being overweight, high blood pressure and high cholesterol levels (https://www.nhs.uk/conditions/cardiovascular-disease/). Unfortunately loss of mobility with HSP tends to result in higher levels of inactivity, which increases the risk of cardiovascular issues.

Given all these factors it is my opinion that those with HSP should start by considering themselves at higher risk of having severe problems if they are infected with Covid-19. People at the beginning of their HSP journey or who are not affected significantly may be able to justify that their risk is the same as the rest of the population.  

People should follow their governments advice about social distancing, minimising non-essential travel, working at home, staying indoors, avoiding big groups. Those who:

• are affected by HSP severely, or 
• have HSP and at least one other health condition, or
• are over 70 and have HSP irrespective of severity

should seriously consider if they need to self-isolate for a while.

If you are not sure about this, then it might be a good time to book a call in with your GP/Doctor/Neurologist/HSP specialist to identify the best course of action. This link gives the UK advice on self-isolation: https://www.nhs.uk/conditions/coronavirus-covid-19/self-isolation-advice/.

I realise that people with HSP are often affected by depression, low mood, loneliness, isolation (etc.) It is important to keep in touch with people during this time, so I encourage people to communicate with friends and family. Use whatever method seems right, e-mail/social media/letter/phone or perhaps something more unusual. Avoid face-to-face contact.

Also, whether you are self-isolating or social distancing don't forget to follow your stretching routines and keep as active as possible. 

If you are not a member of an HSP support group then this might be a useful thing to consider. There are 'real' groups in Europe (http://www.eurohsp.eu/), USA (https://sp-foundation.org/), Australia (https://hspersunite.org.au/) and other places. There are virtual groups on Facebook (https://www.facebook.com/search/groups/?q=hereditary%20spastic%20paraplegia&epa=SERP_TAB), Rare Connect (https://www.rareconnect.org/en/community/hereditary-spastic-paraplegia), Patients Like Me (https://www.patientslikeme.com/conditions/hereditary-spastic-paraplegia) and other places.

As far as information about Covid-19 goes, I like this page from Information is Beautiful: https://informationisbeautiful.net/visualizations/covid-19-coronavirus-infographic-datapack/ This presents both data from China and Italy, it confirms that it affects older people more than younger people, and that those with underlying health conditions make up the bulk of those who have died.

Symptoms update - Shadows and Hills

I have been having a bit of a turbulent time in recent months, which has led to me being more stressed, more depressed and more tired than normal. Therefore, this symptom update should be read with a small pinch of salt as I wont know for a while if these are short-term changes as a result of my turbulence or part of the long-term HSP journey.

Shadows

I happened to be walking back home one evening in the dark. As I walked under street lights my shadow was cast down on the ground in front of me. It was interesting to see how uneven my gait has become. I know that my gait is changing over time, but it was quite a surprise to see how much it has changed.

Hills

I have managed to get out on my bike recently, and I find that my uphill speed is getting very slow - by which I mean easily 4-6 km/h. I was quite surprised to by cycling up a hill on the way to work and was overtaken by a runner on the pavement. I will have to have a look at my biking statistics to see if my average speed is coming down or not. This is not as straightforward as you may expect, as there is a mix of riding in the list - some off-road stuff which is slower anyway, and some cycling with the boys at walking speed on the way to/from school.

I think that both the shadows and hills factors occur because I am more tired than usual. After a busy day I feel that I am more tired than I used to be, and I am beginning to feel the need to sit down and have a small rest.