ONS Outcomes for disabled people report

A brief post for today. 

(I would post about this paper: https://doi.org/10.1093/brain/awab386 - Clinical and genetic spectra of 1550 index patients with hereditary spastic paraplegia - but this is not an open access paper, which means it is difficult to find out more details. The figure of interest is this, presented by the Spatax group (original first, then a version with SPG numbers requested by the French HSP group):

This shows that SPG4 is most common dominant and SPG7 is most common recessive, but more importantly there are still 68% (two thirds) who do not have a genetic diagnosis, reinforcing the diagnostic gap in HSP - see fig 1 here: https://www.frontiersin.org/articles/10.3389/fneur.2018.00958/full. More on this paper if/when I can get a full version to read)

In other news, the Office for National Statistics in the UK published their outcomes for disabled people report, covering 2021.

https://www.ons.gov.uk/peoplepopulationandcommunity/healthandsocialcare/disability/articles/outcomesfordisabledpeopleintheuk/2021 

This has the following headlines - focussing mostly on adults of working age in the UK:

• The proportion of disabled people who reported feeling lonely “often or always” was over four times that of non-disabled people.
• Disabled people had poorer ratings than non-disabled people on all four personal well-being measures.
• Around half of disabled people were in employment compared with around 8 in 10 for non-disabled people
• One-quarter of disabled people had a degree as their highest qualification compared with nearly half (43%) of non-disabled people
• Disabled people are less likely to own their own home and less likely to live with parents than non-disabled people.

There are similarities between these findings and the findings I show in my survey results - particularly around loneliness and lower wellbeing. In more detail, they look at wellbeing and find:

• Life satisfaction scores are 6.5 out of 10 for disabled people, compared with 7.6 for non-disabled people
• Feeling that the things done in life are worthwhile score 7.0 out of 10 for disabled people, compared with 7.9 for non-disabled people
• Yesterdays happiness scores 6.4 out of 10 for disabled people, compared with 7.6 for non-disabled people
• Yesterdays anxiety scores 4.6 out of 10 for disabled people, compared with 3.0 for non-disabled people (higher numbers equate to poorer well-being in this measure)

The report shows that feeling lonely has increased from 10% to 15% since 2014 for disabled people, but has stayed around 3% over the same period for people who are not disabled. The report does not speculate why disabled people tend to feel more lonely or why this measure increases over time. 

Symptoms update - muscle pain

 A relatively short post for today.

Muscle Pain

Every now and again (perhaps once a month or so) I get some pain in my calf muscles near the time that I wake up, which lasts for a few seconds. The muscles feel like they contract really tightly and I need to flex my ankles and/or my knees to stretch the muscles out and stop the pain. When I then get out of bed and stretch them more, and start moving around, the muscles go back to normal. There is a residual small amount of discomfort lasting until after I get more active and get the muscles to work more.

Bladder medication - Oxybutynin 

I noted in November that I've changed bladder medication. The messages from my bladder to my brain are different. The messages that get through now suggest that my bladder is approaching full for more of the time. With the tolterodine I would have needed to go to the toilet when getting these messages, but with the oxybutynin I've not yet worked out when the 'you must go to the toilet' point is - so I am sometimes going to the toilet without being able to go, or with only a small amount of urine coming out.  

Topics covered by my surveys

I have just completed an update to the pages of my blog. At the top of the page for my survey reports I have now added the following table, which should help people find details about specific topics of interest.

I have put ticks to show what is being covered in my current 2021 survey, and once that analysis is completed and written I will update these.

You can click each tick to take you to the post for that survey.

Year	2013	2014	2015	2016	2017	2018	2019	2020	2021
Activities of Daily Living						ü
Bladder				ü					ü
Bowel				ü
Coronavirus								ü
Cure for HSP								ü
Depression			ü		ü				ü
Disabled Y/N?					ü	ü	ü	ü	ü
Employment					ü
Exercise		ü					ü
Fatigue				ü
Frequency seeing professionals								ü
Grief/Stigma									ü
Home modifications			ü
Life with HSP							ü	ü	ü
Lifespace\Distance of travel							ü
Medication		ü					ü
Misdiagnosis	ü					ü
Mobility	ü	ü	ü	ü	ü	ü	ü	ü	ü
Multiple Long Term Conditions						ü
Needs								ü
OXPAQ								ü
Pain					ü
Quality of life			ü
Resuorces/ Information	ü			ü					ü
Sleep						ü
SPRS questions			ü
Standing from chair			ü					ü
Supplements		ü
Support groups						ü
Surgery								ü
Symptom tracking						ü
Symptoms	ü					ü
Walking					ü
Walking distance			ü		ü	ü	ü	ü	ü
Wellbeing					ü	ü	ü	ü	ü