I am 73 years old and was diagnosed with mild mitochondrial disease (mito) in my early 60s. If it was severe or even moderate, I probably would not have survived to anywhere near this age. As a child my teachers and scout masters would tell my parents that I should be seen by a doctor as I wasn’t “keeping up with the other kids”. Doctors at that time had no knowledge of mitochondria. I was not too concerned about my lack physical ability as I was stronger and fitter that those younger than me and I usually played team sports with boys from lower grades.
In my early 40s I started getting mild MS-like symptoms such as hearing, optical, and muscle nerve issues. MRIs had just come in and I was an early adopter. I have lost count of how many MRIs I have had. Nothing was ever found, and I was told it must be stress and to seek counselling
In my 60s I became more easily fatigued and started having myoclonous jerks, similar to Tourette’s ticks. I used to sail a small boat and go bushwalking (by myself as I couldn’t keep up with others), I had to give these up. Still one of my main disappointments that cause sadness.
Mitochondrial disease was mentioned as a possibility. Coincidentally, I was taking part in an unrelated research project looking at my family’s genes. The researcher said I had a gene that can cause mitochondrial disease. That together with a border-line muscle biopsy and my neurological symptoms produced a diagnosis of mild mitochondrial disease.
For a while I was living alone in a three-bedroom house. It took a lot of energy to move around the big space, manage the steps, and take care of the large garden. It got to the point where I couldn’t hold the garden hose for more than a few minutes. This was a bad period that saw my physical ability fading quickly. I assumed that if kept going downhill at the same rate then my days were numbered. This was depressing. So I decided to move into a retirement village. I now live in a 150-year-old cottage. I pay for a cleaner once a week and the retirement village takes care of all the maintenance and lawn moving. Moving to a smaller, more accessible place and cutting down on physical chores has helped conserve my energy and improve my health. Overall, I have everything I need and I’m glad that changing my lifestyle has helped my health so much.
I have found that most GPs have little knowledge of mitochondrial disease and are not particularly interested in its management. They seem to believe that it is rare and that it will be managed by specialists. This is probably true for those with severe or moderate mito but I suspect for those like me, with milder forms, GPs only treat the symptoms. I have been told many times that they don’t have the time to build up their knowledge on mito.
Information days and Support Groups run by Mito Foundation and even Facebook groups have been a great help. I have obtained the knowledge to take the initiative and to obtain referrals to the appropriate support services.
These days my main issues are fatigue and exercise intolerance. I can only walk short distances and doing household and garden tasks are a real issue. I can only exert myself for a short period and then need to recover. I try to match my energy usage to my energy production ability. I walk slowly, with a hiking stick, and know where all the seats are.
My mantra is: REST – DO – REST – DO – REST
— Tim
June 2023
