A little bit of good news

I had a monthly appointment with my GP yesterday. We’ve been having these get-togethers ever since I was first diagnosed and basically they allow her to monitor at close regular intervals any changes in my condition that might require medical intervention. So far there’s been little need to do much more then just chat about my experiences during the preceding month. Yesterday we discussed my latest blood test results. Since November I’ve been taking 50mg twice a day of Riluzole, the only drug in the UK approved for use with MND. As the drug can have a negative impact on liver function it is necessary to perform monthly blood tests for the first three months. After that the intervals increase, typically to every 3 months for the first year and then annually thereafter. The good news is that everything is normal and I have been given the green light to continue to use the medication. So now I don’t have to worry about having a blood test every few weeks which will give my arms a chance to heal. After all the blood tests I’ve been having in recent months the veins in my arms were starting to resemble old bicycle tyre inner tubes covered in lots of puncture repair patches! One day they’re going to stick a needle in and I’m going to go ‘bang’ and there’ll be bits of me everywhere 🙂

Riluzole is something that my Neurologist tells me I need to take on faith as it will never make me feel any better or improve muscle strength. If it’s doing its job properly then it will slow down the progression of the disease, nothing more, and even then it only typically buys you another three months. For this reason it is best prescribed in the earliest stages of the disease so as to extend the quality time available. Three months may not sound much but in cases where the disease is particularly aggressive even this can mean so much. From what I’ve read Riluzole appears to be more effective in bulbar-onset MND but as I have limb-onset MND it is probably not having such a beneficial effect. But to counteract this I’ve also read that life expectancy with limb-onset is greater then bulbar-onset so what you loose on one thing you gain on the other I suppose. It may not be helping much but at least I don’t appear to have suffered from any of the potential side effects which include nausea, vomiting, headaches, dizziness, vertigo and pain. And for that I am grateful.

Mark

Information Sources

http://www.patientslikeme.com/treatments/show/11

http://www.nice.org.uk/nicemedia/pdf/Riluzole_htarep_part1.pdf

http://books.google.co.uk/books?id=7WSXahQA44kC&pg

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Some useful information links

Today I am starting to make available the web links I have collected together that have a relevance to MND. Ever since I was diagnosed I have had a thirst for knowledge; a need to understand all about the disease that is destroying my life, what research is going on that might offer up some hope, and what clinical trials are underway or about to start up. So I set up an Alert using the Google search engine. Now whenever a news article or report is published to the Web which contains the text string ‘Motor Neurone Disease’ I receive an email notification. It can be surprising what some of these links can lead on to…

I hope that the sharing of these links is particularly useful to anyone recently diagnosed like myself . For everyone else I hope that the information they contain provides a greater understanding of this little understood disease.

Mark

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D+100

Yesterday I reached my first milestone in the journey I find myself reluctantly taking. I find it so hard to believe that 100 days have already passed since that fateful evening back in November when I received a diagnosis of Motor Neurone Disease from the Consultant Neurologist.

Since November a whole care network has started to spring up around me without my really having to do anything. Thankfully the ‘system’ seems to work quite well here in the South of England. Although I do understand from what other people have written that it can be a bit of a postcode lottery so I guess I’m lucky in that respect. Hardly a week seems to go by these days without some form of contact from health care professionals. On top of that there have been a series of regular blood tests, visits to my GP and countless application forms to fill in so I’m really kept quite busy.

As time goes by I find myself needing to constantly adapt as my physical abilities diminish. Life has become a never ending series of problem solving exercises as I try to figure out new ways of performing daily activities which until now I would have not given a second thought to having learnt the skills as a child. All of a sudden the simplest of tasks have become hurdles to overcome. Putting a jacket on for example is extremely difficult as I don’t have the strength to lift it onto my shoulders. Even doing the buttons up on a shirt now require me to rest my arms across a flat horizontal surface as I cannot hold my arms up long enough to work the buttons.

During these past few months I’ve seen a steady decline in strength and range of movement in my arms. I can no longer gradually raise them but instead have to rely on momentum and just throw my arms upwards and cling desperately to the surface I’m aiming for. Sometimes it takes several attempts!

Energy levels are something that I’ve noticed recently start to collapse. I just don’t have the same levels of stamina as I used to. Anything physical requiring the use of my hands and arms is guaranteed to tire me out in an embarrassingly short time. And to think that not so long ago I used to haul great bags of stone around the garden and carry floor-to-ceiling panels of wood upstairs when I was building wardrobes. Now it takes both hands to raise a mug of coffee to my lips.

One job I’ve had to reluctantly give up and seek help on is the weekly grocery shopping. Towards the end of last year I was getting the checkout girls to pack everything in to bags for me but now I no longer even have the energy to lift the bags off the conveyor or load them into the car.

As the motor neurones die and my muscle tissue atrophies away I become more susceptible to aches and pains. I find that I have to be careful now when I bend my arms and hands to for instance tuck a shirt in or get something out of a jacket pocket. It’s quite possible that such actions can trigger a pain or a cramp so I have to back off quickly. Aching shoulders (mostly my left side which is the weakest) are something else that seems to be constantly with me these days. And lying in bed early this morning I was doubled up in pain thanks to a leg cramp in the left calf muscles. For the rest of the morning I was hobbling around the house unable to put too much weight on that leg.

Until the diagnosis I was pretty sure that the disease was confined to my upper arms and shoulders and predominantly worse on my left side. This would indicate that I had the disease asymmetrically. Inevitably this meant that my right arm was doing a lot of extra work to compensate for the weakness. However in the months following my right arm has deteriorated quite noticeably meaning that I now need both hands to perform most tasks – one to offer support. There are also some early signs that the disease is starting to affect my hands and it looks like I may be loosing some weight on my upper leg muscles too although they feel strong enough at the moment.

Although there is a danger of falling into a well of depression I can honestly say that it has not been the case so far. I put that down to the fact that I have been so very busy and it has thankfully not given my mind the chance to brood. Yes, there is a lot to be said for keeping your mind active. Still being in the workplace also helps as it keeps me from feeling socially isolated.

But despite everything that is happening, how tiring, frustrating and indeed frightening it can be at times, I still have a good quality of life. I’m still mobile, still able to go out walking and enjoy the fresh air. Still able to drive and remain independent. I’ve had several offers of having someone come in to help me prepare for work in the mornings but I try to remain as independent as possible. I look at it that everyday I can remain independent and do the things I want is another day of victory against the disease and long may it be so.

Actually on the subject of driving I’ve noticed something very strange start to happen just recently. For some reason everyone seems to be obsessed with driving on the wrong side of the road. All I seem to see these days are headlights rushing towards me and the huge bug eyes of drivers who obviously realise their error as they quickly try to swerve and get back into their own lane. It’s most odd. I wouldn’t have bothered even mentioning it if it was just the odd one but it seems to be everyone! Very strange!

Mark

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Welcome!

To my dear family, friends and colleagues and those kind enough to spare a few moments to read this, especially my fellow sufferers – welcome!

The idea for this weblog evolved from a need to eliminate the endless emails I was writing to various people about my health, the problems I was having keeping them all synchronised, and the desire to perhaps open these experiences up to a wider audience in the hope that they might prove helpful to people in a similar situation.

It’s not my intention to produce a day-by-day account written in a journal-like fashion. It is designed to be a series of fairly regular entries that will document the changes and the experiences of living with such a devastating neurological condition. I’ll do my best to inject some of my own style of humour and optimism along the way and maybe I’ll even be able to raise a smile on your face.

I had planned to start this up a while ago now but life has been very hectic these past few months since being diagnosed as you can probably well imagine. However, with the first of my self appointed milestones now reached (covered in a separate weblog entry), today seems the ideal time to start.

I’ll apologise in advance for any typographical errors that make it through to publication. As the disease progresses towards my hands I find I often type the wrong characters, transpose characters or simply miss them out altogether. It means I have to be more vigilant when I proof read but inevitably some will slip through the net.

As the name of my webspace implies, I’m determined to fight this disease, not to just give up, because all life is precious. I want to live my life on my own terms as much as possible and not have the disease dictate it to me. I know that’s easy to say and there are no magical formulas for winning against this terrible disease but that still doesn’t mean we should just quietly go home and accept our fate. As a species I think we have this inbuilt desire hardwired into us to try to survive against all odds. So that’s what I intend to do for as long as I can!

Let’s see how it flies.

Mark

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