Sunday 19th April 2021 – 3pm
Write up by Penny & June
We had a super Zoom today, no new members this time, but enjoyed lots of discussion around a range of topics listed below…
FES – Functional Electrical Stimulation
Many of us we found had tried this – with mixed results. One member having just been assessed but was found to be not suitable as their heel didn’t touch the ground first, so wouldn’t activate the FES pulse. One member using it now very successfully, others having tried for a period of time unsuccessfully. We all agreed that it can be very helpful, but is not suited to everyone.
Leg Pain & swelling
Again, most of us experience pain, swelling, cramps at some time. Some suggested massage, compression socks, raising legs, and/or medication in the form of pain relief and/or Baclofen – Please seek your GP’s advice re any medication.
Several said they found that compression socks were effective, but extremely difficult to put on/take off. There is a hand-held device made by Cosyfeet, a simple cotton covered frame, that enables compression socks, and ordinary day-wear socks, to be applied more easily. These can be obtained through one’s GP, the NHS, or one’s Consultant, and can also be purchased through Amazon for a little over £8.
Sleeping Problems
Almost all of us have this problem too. Some said that since they have given up work and not being so active, feel that this is a contributing factor. Most of us experience disturbed sleep through bladder and/or bowel issues, restless legs, clonus, pain, spasticity, and leg cramps.
Work related issues
Many of us have retired from work, some intending to in the near future, but have not been very well supported in their workplace. Occupational Health and Access to Work were suggested as a means of help.
Feel this could be a subject for discussion/support at an AGM?
DLA/PIP
We all felt there is a problem here for us all, and which would be good to be able to have this as a discussion/help for anyone who is in the position of losing/retiring from their job because of HSP.
We all wondered how can there be so many differences in assessments/understanding of HSP in PIP/DLA and in the workplace, and felt there needs to be greater understanding by employers as to how a person is assessed fairly/lawfully, and with everyone seeing the situation at the same point and with the same outcome.
We all felt that this too, would be great to have this as some form of help/discussion/speaker/support at an AGM maybe??
Scooters
One of our members is looking to buy an electric scooter in the near future, has never used one, and wanted a little more independence when visiting local shops. Shopmobility was suggested, to go and have a trial run, there are also scooter-hiring facilities available in most cities where one can hire one for the week and where one could try different kinds to find which is the best for their needs.
Help/Tips
Many of us struggle with carrying things from one place to another at home simply because we need to use two sticks/supports.
One of our members uses a helpful ’peg bag’, which is worn like an apron tied around the waist and which enables her to carry things from one room to another, hands free! – Great idea!
We concluded our meeting with an agreed provisional date for our next meeting, hopefully a face-to-face, on Sunday 24th October 2021 – but which will be confirmed nearer the date. Please do look out for details on our Website, Newslink or Facebook.
Kindest regards to all, from Penny & June.