Mito Sufferers and their stories:
Our brother Peter was one of five siblings, all of whom have been diagnosed as having MELAS* – a form of mitochondrial disease.
He was 34 years old when he had his first ‘strokelike episode’ in 1998 which was a great shock to us all, as he was relatively fit and healthy prior to this. We had not heard of MELAS and had no idea about mitochondrial disease. Peter seemed to recover from his first episode fairly quickly, although he was tired all the time. He also suffered hearing loss, which gradually became worse with time.
Over the next 5 or so years, Peter suffered from lack of energy, memory loss and eventually had to wear hearing aids. His balance was also affected.
He had his next stroke like episode when he was 41 years old, followed by another at 42. Each episode has been worse than the one before. Peter’s behaviour was quite erratic during his stay in hospital, until a good balance of medication was reached – which was by trial and error.
Eventually Peter was unable to work. He grew tired very easily and slept around 12 hours per night, and another hour or two in the afternoon or mid morning. His speech was very slurred and he lost a lot of weight. He wore two hearing aids, still finding it hard to hear. His head hung down towards his chest as if he hadn’t the strength to hold it high.
He took a cocktail of drugs every day, including Rivitrol, Lamotrigine, Zyprexa and a supplement of L-Arginine. He had also been advised to take CoEnzyme Q10.
Peter was fairly isolated socially, having separated from his wife around Christmas 2008. He then lived with his parents, hoping to find himself an apartment. Realistically, Pete could not live alone. Peter had good days and bad days, but his two beautiful children kept him going. He still had a great sense of humour, which he used to say was the one thing that would never be taken away from him.
Peter was admitted to hospital after a routine visit to his neurologist in May 2009, as he showed signs of pre-cursors to another ‘stroke-like-episode’. The reasoning behind this hospital admission was to rest or ‘hibernate’ his brain.
Unfortunately, Peter went downhill during this two and a half week stay in hospital. Sadly, Peter passed away on 13th June 2009 aged 45 leaving behind his 13 year old son and 11 year old daughter.
*Mitochondrial Encephalopathy, Lactic Acidosis and Stroke-like Episodes