JB Progress

A productive afternoon at the John Radcliffe in Oxford, with Sandie. I saw Professor Kevin Talbot, one of the two professors that run the Nuffield Department of Clinical Neurosciences, the other being Martin Turner.  After a short examination he was clear that I had the ALS variant of MND and that both upper and lower motor neurones were affected. He will give me a written and unequivocal diagnosis. At my request, he will also give me a referral to the Occupational Therapist at the Royal Berks, that being the most urgent need to enable house modifications to be got under way. I asked him how he knew about both upper and lower motor neurones being affected and he said it was because my toes curled upward when he drew a stick along the sole! My progress is likely to be similar to my mother's, but with differences that can't be predicted. We talked a lot about the research he and the unit are doing. They have discovered many more defective genes. I have fully signed up to be...

It is possible that I have inherited MND from my mother, who had it 30 years ago.  If that proves to be the case, this has implications for my five younger siblings. Research has discovered 70% of the faulty genes that cause MND. This link is to a helpful article on the subject. The article contains links to related information sheets, including one on genetic testing. https://www.mndassociation.org/research/causes-of-mnd/inherited-mnd/ I hope to become involved in the research being done by the MND Unit in the John Radcliffe Hospital and it is possible that they may be able to identify the faulty gene that I may have inherited.

A Stannah sales man called in this afternoon and investigated the house. He confirmed that there is just one location in the house suitable for fitting a through-floor wheelchair lift. That is good news, as it means I can still gain full access to both floors of the house, even when wheelchair-bound.The lift may also come in useful for moving items between floors and for the situation where climbing the stairs becomes too difficult, but I can still walk around. It will take 2 months from order to working lift, but I need a formal MND diagnosis and an Occupational Therapist visit before I can place an order. 

A most productive visit to Volvo Cars in Reading yesterday morning. Sandie drove me there as I'd become concerned about driving my existing XC60, having got my right foot stuck beneath the pedals on a couple of occasions. An excellent sales exec found us a low mileage used V40 automatic in good condition. She arranged for a specialist firm to fit a left hand accelerator, so that all pedal work can be done with the functioning left foot. It will have a switch to flick between left and right accelerator pedals, so that Sandie could also drive it. I should have it in a week's time. In the meantime, the XC60 will remain on the drive. The car can be further modified with hand controls, when needed. It can also be equipped with a wheel chair hoist when necessary.

I have started banking my voice, using an organisation called Model Talker.  You have to record 1,600 sometimes tongue twisting phrases. It scores you on speed of utterance and quality of pronunciation. Green, yellow or red dots appear for each recorded phrase. I've recorded 350 phrases so far, using the headset that they recommend. Achieving both green dots is hard and I have a fair number of red dots that I can't make green, even if I re-record them several times. So I settle for yellow.  Model Talker seems the most popular voice bank by far. But there are half a dozen others. I know there's an iPad app that will speak your voice, using Model Talker files. That of course needs your fingers to work, touching the screen. I have not yet got to the bottom of which voice banks work with which speech generating hardware units that support eye control. I've found two of these: one by Tobii Dynavox (USA) and one by Smartbox (UK). I have been given contact details for ...

I'm finding out that house modifications are a big part of preparing for MND and probably have the longest lead time for getting them done. The biggest thing is being able to get upstairs when in a wheelchair. A wheelchair lift is the answer, if the house can accommodate it. I have a lift salesman coming round next week to see if it would be practical. A lady up the road has had one fitted for her husband (stroke) so we plan to have a look at it.  Second best would be a stair lift. But that needs the occupant to be able to support their body while travelling in it. Also to be able to manage transfers on to it and off it on each transit. So it would be usable for a shorter distance into the disease. The other things are making the house generally accessible by wheelchair with ramps, paving and adequate turning circles. I have a good friend and neighbour who will help me with all this, as well as helping to clear out the house and garage of unwanted stuff. Adding home...

My ability to drive my manual Volvo is drawing to an end, as I have some difficulty in rapidly transferring my right foot from accelerator to brake pedal. I can press the pedals OK, though, with either leg. A colleague at work got MND and became wheelchair bound. He was able to carry on driving to and from from work by using an car with adapted hand controls and with a hoist that took his wheelchair on and off the car's roof. The immediate solution would be an automatic car, adapted for left leg pedaling. That can be done. The question will be whether to go for hand controls now or later. I am investigating and will report later.

I had a valuable and touching phone conversation with Simonie, whose husband Sid died at home of MND a year ago. She sings in the same choir as a sailing friend of mine near Telford.  The story of her husband's illness has many familiar elements, but also new ones, as MND care has moved on considerably in the last 30 years.  It underlined for me just how taxing is the role of MNDA carer. Simonie had a heart attack afterwards and thinks that the stress of his illness brought it on. I wrote up the conversation and recorded all her tips. I emphasise to Sandie that she mustn't overstretch herself in caring for me.  Better to post me off to a nursing home before things get too tough. 

My legs are very slowly losing strength and the most affected right leg gets floppier.  I can walk without the use of a stick, but am starting to use one, mostly to provide extra stability as a guard against falls.  Once on the ground, intentionally or otherwise, I'm unable to get onto my feet without something to pull up on, using my arms.  Nonetheless, Sandie and I managed up to 8 miles in a day, walking around Stockholm and Copenhagen. 

I got eye control working on my Windows PC yesterday. Windows 10 only got this feature in its last major update and it's still in beta. Using only my eyes, I was able to move a "mouse" around the screen and click things, type using an on screen keyboard and type messages for the computer to speak - in a US accent.  It's slow work, but no doubt one would get faster with practice.   The point of this is to gain experience in using eye control, should I need to do so in anger later on. MND spares the five senses.

Today is our last in Copenhagen before travelling home tomorrow. We managed 6 miles walking today, much as on previous day, at a slow dot and carry pace using a stick for stability. Despite the stick, I fell headlong onto the pavement, having caught my draggy foot on an uneven cobble. Two Danish men came immediately to my aid, hauling me upright after checking I was OK. I would have had considerable difficulty getting to my feet without their help, as there was nothing around to haul myself up on. This follows a number of previous falls, mostly caused by the draggy foot catching on things or simply sticking on a smooth floor. Most falls have been inconsequential, but two were unpleasant and took a day or two to get over. But falls are to be expected with my condition.

Around 90% of people with MND lose their voices. These days it is possible to record one’s voice in a voice bank. Then later, when one’s voice has grown feeble or lost, there are apps that you can type messages into and have them spoken in one’s own voice. So I have been investigating the competing products in earnest and plan to bank my voice soon. None of this was possible 30 years ago when my mother lost her voice.