Before #MND I used to be glass half full, now it’s 3/4 full – maximising what you still have

Well its a mug, but I’d thought I’d just touch on one of my main struggles currently, my balance. I typically fill cups about 3/4 full now, as walking with fluid tends to be a messy affair! As I told a friend when I made him a coffee the other day “you can either have 3/4 cup or a full cup, but it won’t be full by the time it reaches you!” Of course he requested the 3/4 level, as watching me clear up would be as frustrating as watching my favourite football team, Arsenal, play.

Why do people with MND show this balance problem?

Our neurologists and doctors tell us that its weakening muscles as neural connections are lost. There are basically two things happening we believe, weakness and spasticity (muscle stiffening). The level of these and rate of deterioration differs from person to person. I like to compare MND to a car which has a central computer and wires to bulbs, doors etc. The spasticity is caused by damage in the brain, causing muscles to contract when they shouldn’t, just like an intermittent fault in a car when your lights come on and off.

Currently I very much have stiff muscles, and little or no muscle wastage. My strength appears to be ok. It is when I try to move quickly that issues occur!

People have asked me how my legs feel. Well for those skiers out there; you know how you feel when you stand on the top of a black run just before you leap? Most of my walking feels like this.

MELANCHOLY APPROACHING ALERT!

I do miss skiing.

END OF MELANCHOLY

Sorry about that folks, just had a moment.

So like any disease or ailment, I wondered what I could do to ease or even slow down the problems.

There is currently no real medical opinion in the UK on what to recommend to people with MND in this area, as typically disease progression is very fast. However, after speaking to a few people, and a bit of research, I decided to have regular physiotherapy, once a week.

Initially this started out as standard manipulation, but quickly after a recommendation from a Neuro Physiotherapist I changed to soft tissue massage.

I highly recommend my specialist, Liney McDonald, if you live in the West Sussex area.

Shelf of terror at Physiotherapy!

The above picture shows some of the tools of her trade. I promise you they are physio items, and not a photo from one of those, how do you say, mature theme shops!

This massage treatment is what we used to call at school “bullying”. I am now seeking a psychiatrist and a lawyer! On the subject of bullying,  I remember being attacked by a bunch of 14 year old girls when I was 14 at school but being saved from the hounding and its apparent end result by Miss R! Thanks a lot, Miss R!

Anyway, back to reality. My first session, about 3 months after diagnosis, was a bit painful as quite clearly the stiffness in my calves, hamstrings and quads had built up.

I may not be using the right language, but it involves breaking up muscle knots which are forming from the constant muscle spasms that I experience.

Although MND/ALS is progressive, and the downhill path will continue, I am determined to do as much as possible to keep the legs firing. It just makes good sense that continued use must help. For example, with Polio sufferers it has been shown that new connections are made, called collateral sprouting. This is where new neural connections are made to fill the spaces left by dead neurones. We don’t know if this can happen with MND, but hey, I have nothing to lose.

So to any of you out there who may be suffering, give it a try. Ask your GP/MND Nurse practitioner to look into such treatment. You should also discuss with your MND Association visitor who can definitely help. It is all too easy to accept one’s fate, and I truly believe we can make a difference. I honestly feel that without the physio, I may not be still walking.

If you or anyone you know has MND, and want to know more, I am happy to receive emails on the subject.

I am also working with facial exercises to help my voice. I do these exercises in confined or rather private places as it does look a bit odd! I have done them in the car before, and it can be interpreted as road rage!

Until the next time blog watchers. Same place and time next week.

Lee