My name is Paul, and I want everyone to know how myaware helped me.

I’ve been in regular contact with various members of the myaware team, and they have made a huge difference to my experience with myasthenia and my whole life in general.

I no longer feel so isolated and desperate as there is someone to reach out to. The richness of the   myaware experience is knowing that I am speaking with people who have lived experience with   myasthenia.

Before my myasthenia diagnosis, I was living in a very pretty Welsh seaside town. I was married and was looking forward to our 9th wedding anniversary when I collapsed at home, and everything went downhill from there.

My myasthenia symptoms started in January 2023, and I was diagnosed in June. In 1997, I was diagnosed with ME, and the initial myasthenia symptoms were very similar. I started to become more tired, and I slept a lot during the day. Stairs became increasingly difficult to manage, and I couldn’t walk far which affected me socially. In May 2023 I was treated with Ofloxacin for kidney infection and suffered from some terrible side effects.

I now know from myaware that this is one of the drugs which you shouldn’t be taking if you have myasthenia.

In May/June my speech deteriorated rapidly. I remember being on the phone to my mother and she couldn’t understand what I was saying, so she called an ambulance. This was the crisis that led to my hospitalisation and within a few days they thought it was ocular myasthenia.

They did various tests and narrowed it down to generalised myasthenia and started me on pyridostigmine and a steroid regime.

While I was in hospital my marriage ended and this tipped me over into worse symptoms caused by stress as I was technically homeless. I was discharged by the neurology team in Liverpool and had to move down to Plymouth where I am staying with my 86-year-old mother.

At present, I am 10 weeks post diagnosis and I’ve been living in Plymouth for six weeks.

I’ve had to rebuild a new life in a new city, and I’ve had to do it against the background of myasthenia. I was isolated from a medical team who knew me, I had no GP, and no social services support. There was a sense of desperation that led from this that pointed me to the internet and that’s where I found myaware.

One of the biggest helps I have received from myaware is INFORMATION.

The information that has come from  myaware has been superb, especially the diary, the passport and the information sheets for medical staff and  other professionals. The ‘In case of Emergency’ card I carry has been brilliant.

Two other things that have helped is the Zoom meetings for the new members and the peer-to-peer Facebook community page. It was wonderful to see faces who have shared   experiences. In the peer group support I have learned so much from the other members. If you   want to have a specific question answered there is always someone there who has an answer and is helpful.

In my dealings with the team, I always have a good, safe, personal experience and a sense of belonging from them.

Myaware receive no government or NHS funding and rely on donations and gifts to support their work. 

Can you donate £10 so that myaware can continue to help people like me?

I understand that in the current economic climate, you may not be able to donate. If this is the case, could you share this appeal with your family and friends via social media, text, phone, or email?