Season 3 - Episode 5: Annette McGarvie

Welcome to MS is Chronic. My latest guest is Annette McGarvie. Who I met through our local MS Support group.

Annette’s story starts with a fall and a broken nose. Which ultimately leads to a diagnosis of Multiple Sclerosis.

The journey from an MRI to the day of diagnosis Annette shares with a range of emotions many listeners will be familiar with.

You’ll hear Annette share how she copes and what it means to have access to the local MS Support group where she meets like minded people who ‘get it’ and lnow what it means to have MS.

Annette is also a member of SB Elevate, which is Scottish Ballet’s dance programme. The aim to support the physical, mental and social wellbeing of people living with Multiple Sclerosis (MS).

This programme, which is the first of its kind in the UK, was developed in partnership with MS specialists, University of Florida, Georgetown University, MS Society Scotland and MS Revive.

SB Elevate® has been made possible by the generous support of Baillie Gifford (Scottish Ballet’s Neurological Dance Health partner), our trusts, foundations, and patrons.

If you have Multiple Sclerosis, are on a journey that is leading to an MS diagnosis or know someone with MS, this podcast is for you. MS impacts people emotionally and physically. These episodes are for people living with, this often unpredictable, chronic illness. Telling their story with honesty, openness, humour and stoicism. Sometimes the language can be a little blue.

The topics covered are from the heart, intimate and very personal.

This is not science, medical or health advice.

It is regular folk sharing their own experiences. The chat ebbs and flows from MS into the day to day of life.

If you’d like to be a guest in future series, please get in touch. Thanks, Barney Black

Source: The MS Society UK website:

https://www.mssociety.org.uk/about-ms/what-is-ms

What is MS?

Multiple sclerosis (MS) is a condition that affects nerves in your central nervous system. That's your brain and spinal cord. In MS, the coating (called myelin) that protects your nerves is damaged. This causes a range of symptoms like blurred vision and problems with how we move, think and feel.

Once diagnosed, MS stays with you for life, but treatments and specialists can help you to manage the condition and its symptoms.

More than 150,000 people in the UK have MS. In the UK people are most likely to find out they have MS in their thirties and forties. But the first signs of MS often start years earlier. Many people notice their first symptoms years before they get their diagnosis.

MS affects about two and half times as many women as men. People from many different ethnic backgrounds can get MS.

Fampridine (original brand Fampyra) What is fampridine?

Fampridine is a tablet that can help some people with MS walk quicker. It’s the only drug with a licence to improve walking speed in MS. You can’t get fampridine from your GP. Only someone with specialist knowledge of MS can prescribe it, like a neurologist.

How do I take fampridine?

You take two tablets a day, one in the morning and the second in the evening, with 12 hours between each dose. You take it without food and on an empty stomach. Your doctor will tell you more about how meal times should fit with taking this drug.

The tablet is made in a way that lets the drug into your bloodstream at a steady rate over a long period of time. That’s why you must swallow the tablet whole and not suck, chew, crush or break it. Doing that would let too much of the drug into your bloodstream too quickly. If that happens, side effects are more likely, such as the risk of a seizure. This is also why you need to take the drug without food and on an empty stomach.

How does fampridine work?

It’s not known for certain how fampridine works. But we know that fampridine keeps potassium in your nerves. Potassium is a mineral in your body that it needs to work properly. The movement of potassium in and out of cells helps signals move along nerves, which stimulates muscles to work. By keeping potassium in nerves, fampridine makes them work better, with the result that you can walk faster.

A Fae The Scheme Production

Music by The PFJ - M Lee, B Black, D Sissons, C Mclaren