September – December 2009 – The Calm Before The Storm

There was slow disease progression during this period – but there were quite a lot of contacts made and arrangements put in place that would make things easier going forward:

Carol had to stop driving. Although she could still walk around with a stick the continued locking of her knee and weakness in the foot meant that driving was becoming too painful. It was also getting dangerous as Carol’s legs weren’t responding the way they should. So the old silver KA had to go – by the way the car was called Fifi.

Carol had been prescribed Riluzole as the latest MND drug treatment – we knew it wasn’t any kind of “cure” but it could apparently slow down the progression of the disease – some notes stated a delay in the onset of around 3 months. Carol did actually take this for the first 3 months but the side effects (blurred vision / nausea etc) eventually became too much so she decided to stop.

Carol began researching “other” ideas and made drastic changes to her diet. MSG - we’ve got to get rid of MSG it’s bad for you, so out goes Chinese food and plenty more besides! Gluten also has to go so Carol moved onto gluten free foods – can they please do something about the taste of these! Then there were the vitamins and supplements – here’s a list of the pills Carol started to take - B12, B3, B1, B6, Coenzyme Q10, Phosphatidyl Choline, Turmeric Extract, Magnesium, Vitamins B / C / E, Lipoic Acid, Omega 3, Pyruvate, Ginkgo, Antistax Healthy Leg Capsules, Activated Quercetin. We even bought “Brain Repair Formula” from the States - one of those fabulous guaranteed to work wonder drugs!

That’s the problem with the internet – too much information so what do you believe and where do you stop? At the time none of that mattered if it meant Carol felt better for longer so we’d get whatever she wanted to try. The point is all of those things may actually have worked and helped delay the progression – and they may not – we don’t have the benefit of any comparison so I’m sticking with the positive. They certainly improved Carol’s state of mind – and that’s good enough.

There’s also something called Magnotherapy – but I’ll talk about that in a later post.

Now what about claiming benefits as Carol could no longer work? DLA was easy and Carol was moved up to the higher level for both care and mobility almost immediately. ESA was a different matter altogether – that’s the replacement for IB for people with health problems. Carol made the claim and was refused – the system is so supportive for those of us who’ve always worked and never claimed before! Despite Carol working since leaving school at 16 the fact that she’d been studying for the last 3 years meant she’d not paid enough contributions during that period so she qualified for nothing off the state – thank you very much for that! I’ve done all my ranting about this long ago so we’ll just leave it there.    

Lou had discussed a research study being carried out at Derriford – Carol was initially interested but once she found out it was a placebo trial she decided not to participate. I think it was the thought of nothing coming from all the effort that put Carol off – there was enough to cope with at that point and Carol didn’t need the added stress.

Dysarthria was the term used for the speech / swallowing problems. We met with the Speech Therapist 3 times during this period and the letters make interesting reading today. Carol could still speak, and was certainly still understood by the family. Carol was still drinking and eating reasonably well although problems with swallowing were beginning to appear and certain foods were worse than others. The letters do state there was deterioration between visits 1 and 2 and there are ideas on how Carol could deal with the changes – hints and tips on swallowing / exercises / foods to avoid. I still remember the third visit as Carol asked to be discharged!! Carol has always been stubborn – she didn’t take to the new therapist who’d visited and that was that! However we would need her to come back in the New Year as the deterioration gathered pace and she would provide some great help going forward.   

The Occupational Therapist reviewed the house and talked to us about the future. Our bedroom was upstairs, so is the bathroom, and that was an issue that would need to be dealt with as Carol progressed and would lose the ability to walk. That was a scary thought all that time ago – Carol seemed to be ok so it was difficult to see her not being able to get up the stairs at all – but that would happen within the next 6 months. The OT also made the first of the many equipment requests, bringing in a walking frame and a wheeled walker with a seat. Carol was regularly using these as we approached the end of December.

Way back in June I'd taken Carol to London to see Mamma Mia (as well as Bruce in Hyde Park!). I’d been going to London every month that year for work and had seen a few more shows to pass some of my evenings there. We’d spoken about going a few times after that first trip but not got round to it – the New Year would change all that and there would be many more as we moved into a frantic few months - lots of trips to London and family visits plus a couple of holidays and loads of money being spent – and why not!!