En route to my mother’s today, I stopped by my sister’s. After knocking gently a few times and not receiving an answer, I eventually rang the doorbell only for it to be answered by a sleepy nephew. My sister was out.
While my nephew disappeared back to bed, I took the opportunity to look around my sister’s house in her absence. Although upset, I was not surprised by what I had long ago suspected. My sister is struggling to cope!. This presents itself as hoarding. Upstairs I could not see the floor in her bedroom. The landing was covered with bags full of items and the kitchen, which I am already familiar with, houses racks of wet newly washed clothes. One of my sister’s OCD traits is to constantly wash clothes. The washing machine is always on. There will often be one piece of clothing in the washing machine that has only been worn once. I took a number of photographs and asked my nephew not to let his mother know that I had been in the house. I had already sent her a text to say I would be dropping by unaware that she was not in. Now I sent her one saying that I had been informed she was not in and left. Now I was in fixer mode. Unlike other things that have reared their ugly heads over my lifetime, multiple sclerosis is something that I cannot fix! However, I can attempt to fix my sister’s uncoordinated care by the medical profession, social services and others who are in control of her life. As well as only dealing with symptoms, various sections of the medical profession works in silos and laughingly will often ask my cognitively impaired sister what recent appointments she has undergone and the outcomes!
I made my way to a well known London university where I spent half the day at an MS Society seminar updating MS sufferers, relatives and professionals about the latest research and drug treatments. In the UK there are 100,000 people with MS, which affect three times as many women as it does men. 100 people are diagnosed each week and 75% are unable ever to work again.
Researchers worldwide are looking at how to stop MS via 1) immunomodulation – stopping immune system attacks, 2) neuroprotection – protecting nerve cells and 3) myelin sheath repair – replacing lost myelin. Combining these three therapies would be the ideal scenario.
Fatigue is the biggest problem that MS sufferers have to deal with and my sister’s biggest problem. Bladder problems affect 70% of people with MS. There is no single cause of MS but there are many factors that influence the chance of developing the condition. For example, if you have grown up in the UK you have a 1 in 330 chance of developing MS. If you have a parent with MS it is 1 in 76 and 1 in 37 if you have a sibling with MS. Researchers have also acknowledged that infections such as Epstein Barr virus, which causes glandular fever predominantly during teenage years, is a contributing factor.
I was informed about a number of programmes such as the CRAMMS trial which focussed on cognition, memory, decision making and concentration. This tests whether group cognition rehabilitation sessions can improve memory and cognition. MS LEAP looks at the benefits of resistance exercise, which has been shown to improve fatigue.
Developing treatments for energy: 1) Ocrelizumab – is for those with early stage primary progressive MS (PPMS) and relapsing remitting MS (RRMS). 2) Siponimod – for secondary progressive MS (SPMS)
Myelin Repair: Bexarotene – which has been used as a cancer drug. Trials are underway on those with RRMS
Neuroprotection: MS SMART Phase 2 trial which could slow progression of the disease
Slowing brain shrinkage: Simvastatin, a well known drug used to reduce high cholesterol. The trial is presently in the recruitment phase.
Stem cell therapy, which involves chemotherapy was also discussed and is only prescribed for people with highly active RRMS. The MS Society’s criteria for ‘highly active RRMS’ is two relapses during the last year. There is currently research underway looking at a more moderate chemotherapy centred stem cell therapy
New drug treatments presently undergoing trials are Alemtuzamab to slow disability.
A brief discussion was held on diet, although there is little research here. Discussion focussed on the Wahls and Paleo diet. Obesity also increases the risk of developing MS and of faster deterioration.
Following the seminar I made a GP appointment to discuss my sister’s mental state. I had requested that social services reopen her case, which should never have been closed in the first place. Lazy social workers felt that my sister’s answers to questions deemed her capable of looking after herself. They had failed to look around her property where they should have drawn the same conclusions I did. I also left a message to speak to her neuropsychiatrist, whose treatment stance is to ‘try a different drug until he finds one that works’. In other words – it’s all guess work! In this age of precision medicine, surely there must be a more scientifically advanced way of matching an anti-depressant to the patient?. I left the seminar drained but armed with the speakers details, as she had offered to put me in touch with a team that could suggest consultants and MS nurses who offered a more coordinated approach to patients’ treatments. Fingers crossed!