Salisbury support group organiser Sheelagh reflects on the Salisbury Shakers meet-up held on 27th September.

A select group of seven met this morning in St Thomas’s. We may have been few in numbers but there was quite a bit of news to share.

Sheelagh reported on her day in the Houses of Parliament and also reported on an interview with BBC West/Wiltshire Radio who are looking to raise awareness of ET (hooray!). They have interviewed Julian Fellowes about his recent treatment and wanted to interview somebody from Wiltshire so they picked up Sheelagh’s name from the NTF website and interviewed her in a zoom call yesterday.

I understand that this interview (or some of it, perhaps) will be available on Wiltshire Radio next Saturday and also available online. I will send the link as soon as I have it.

Andrew reported that he had had an appointment with his GP and has been given propranolol. It did not seem to be having a marked effect until he suddenly realised he was able to write down his name and address legibly which is very encouraging. He is on a waiting list to see a neurologist in Southampton but has been told the waiting list is 60 weeks.

Steph’s good news was that she wore her sunflower lanyard when flying to Italy and officials all rushed to assist her, took her, her husband and their luggage and enabled easy, stress free boarding. All without having to ask.

(I have a couple of spare lanyards with the NTF card in them if anyone has not yet received one and would like it.)

Jillian has an appointment with the elusive Mr Vajramani in 2 weeks’ time. It has taken several years to get to this point so we await the results with bated breath.

Elizabeth had a most unsatisfactory neurologist consultation as the consultant was off sick and she saw a ‘Nurse Consultant’ who was dismissive and unhelpful.

We talked about DBS which has been around for some time and wondered if there were any statistics available showing the percentage of successes amongst those who have had the operation. This is something that NTF might be able to help us with.

There was some discussion about the much-lauded Beechband.

The following is my advice, not that of NTF. It reflects only what I think – you have to make up your own minds.

It is advisable, when faced with such ‘wonder gadgets’ to proceed with caution, as follows:

  • Be cautious of claims made on social media or online whose aim is to make money.
  • Look for reliable, independent evidence and scientific backing for any health claims, not just testimonials. For medical conditions, always seek advice from a qualified healthcare professional rather than relying on unproven gadgets.
  • Consider the cost. Don’t pay out a large sum of money until you have covered 2, above


Andrew has taken to French Patisserie baking. He was a little stymied by the need to separate eggs for a custard but managed to find two different styles of egg separators. He reported that the custard was successful but the group felt that we needed more proof of this and that examples of French Patisserie should be brought to future meetings so we could ensure that he is telling the truth.

Lastly, Sheelagh managed to leave her debit card on the paying table, her phone on the coffee counter, her coat over a chair and her bag on the floor. All these items were recovered by helpful members of the church and the group. It may not come as a surprise, therefore, to learn that she forgot to take a photo! Sorry!

Sheelagh

Further reading