To rub or not to rub, that is the question…

Well, here we are again, another week gone by and boy does time fly!. It’s been a fairly busy week and I have certainly been exposed to some new experiences,  I’ll come to these  shortly.

The good news is I am getting to grips with the  toilet and managing not to enema myself every time I use it :-). The Arctic geyser has thankfully decided to relocate to more temperate climes, still not subtropical, however it’s a vast improvement. Any visitors are welcome to try it just for the experience.

Thankfully, this week hasn’t seen any significant physical decline and am pleased to report that I have not fallen flat on my face at all :-). We have received a raising cushion in the event that I go for a Burton. It is basically an air cushion with sections that you put underneath you and it is attached to a mini pump that blows it up and lifts you off the ground. Hopefully, once we work out how to use it properly it will allow me to sit on the sofa again and snuggle down with Mrs to watch a film in the evening knowing that I’ll be able to get up again. I really do miss being able to do that, so fingers crossed this would be a great help.

The most helpful change that we have made so far is the installation of a through floor lift. By September last year getting up stairs was virtually impossible and a stair lift was never going to be an option as  it would have to be custom-built to curve around the stairs and also as the abdominal and core muscles decline I wouldn’t have the strength to stop myself falling off it. this is the most life changing bit of kit that we have and is an absolute godsend. Unfortunately, the installation by the so-called ‘professionals’ left a lot to be desired!. It was supposed to be a couple of days for fitting and the builder who came to strengthen the joists and build the frame was an absolute star, sadly everything else didn’t quite go as planned… They had to move some pipes under the floorboards in order to strengthen the joists, so I’m sitting there in my chair watching TV and there is shout from upstairs swiftly followed by the smell of gas! The plumber had cut through the damn gas pipe which was live, so they turned off the gas and everything was okay… The electrician had to put in the cabling for the lift and had been told quite clearly he must tell me when he was going to turn off the power as I have a gravity fed filter on my koi pondand I needed to isolated before powering down and turning off my pump. So what happens?, He turned it off without telling me. The next thing that I hear is water gushing out of my filter and starting to flood the garden, the pond is about 15,000 L so rapid action is required to say the least. I eventually managed to sort out and stop the flood, sadly not a word of apology from the sparky for his actions. So at this point I have no gas water or electricity, but not to worry you the electric will be back onin 20 mins so all is fine, just in time for lunch. Four hours later, still no electricity as he’s trapped the wires somewhere and causing the RCD to trip out every time he tries to put the power back on. So, come teatime we finally have all utilities back on. Yippee. About eight o’clock I hear this rhythmical tapping on the ceiling so go to investigate and there is water pouring through the ceiling and down the walls. the plumber eventually comes back After we track him down, he checked the tank in the loft and it’s gushing water have as the ball cock is stuck downand the overflow is not connected. The ceiling, walls, carpets and floorboards are soaked and it needed a dehumidifier running for three days to dry out the house. So eventually a few days later than planned the lift gets installed and I’m a happy bunny as I can now get upstairs easily to put my daughter to bed. I have to thank the local branch of MNDA for covering the installation costs and the persons who donated the lift when they sadly were no longer able to use it. Had it not been for these two kind and generous actions it would have been nigh on £10,000 to have had this installation done.

So, back to new experiences. Through my training I have always believed that where the mind goes the body will follow, it is only the limitations of the mind that prevents you achieving success or gains. I have also had a suggested to me to consider homoeopathic /alternative treatments, so when a situation arose where I was offered some “energy healing” I thought I might as well give it a go. I duly attended a session on Monday which was scheduled to last for an hour and a half, it was to be some deep relaxation, energy manipulation and acupressure. The session kicked off with the relaxation, with my eyes closed I am sitting there in my wheelchair imagining that I am walking down the beach and feelling the sand between my toes, unfortunately the physical aspects that I am no longer able to do are difficult to imagine with fond memories so I’m not getting relaxed that much. The next bit, for which I had my eyes open, involved handwaving and swooshing around my body and my head. This is something that is completely foreign to me and whilst I am open-minded enough to give anything a try and fully respect the process people truly believe in however I still cannot comprehend how a hands off approach can have an effect on the bodies well-being. The third aspect was the pressing of various parts of my head and face, this was actually really quite relaxing and I’m sure this coupled with the hypnotic Chinese music sent me to sleep towards the end of the session. It may sound that I am a complete cynic, but I actually had the best night sleep I’ve had in ages that night and I’m going back again for some more. I also was introduced to reflexology yesterday, something which  I found to be both  interesting due to the direct interaction with your body, meridian lines and chi, and relaxing due to the massage of the hands fingers and forearms which are quite stiff usually due to muscle wasting and shortening. I have to say that I am pleased that I have given both of these ago and hope that they are cumulative in their use.

I have had a great suggestion that there should be a pimp my scooter program, I can just imagine Westwood going to town and installing amps and subs along with some big fat 22 inch chrome rims on my scoots. The subject of modifying scooters came up a while ago with some fellow MND people and progressed to what else we could do. I thought that a wacky races day where we all get our scooters and wheelchairs and do a variety of races, obstacle courses or just flat-out quarter-mile sprints would be fun and an opportunity to raise some money and awareness. I even e-mailed top gear to see whether or not it would be something that we could do with them as it would make an interesting feature for the show and also provide some profile for this little-known disease. Unfortunately I haven’t anything back from, but you never know I may try and organise something when the weather gets better :-).

On a final note, my daughter has started swimming lessons and I wasn’t going to miss this for the world. I was on the viewing balcony and she was just going down to get ready for swimming, I said goodbye and love you to which she replied I love you to the moon and back. It was such a sweet thing that it brought a lump to my throat, how can just a few little words melt you so much.

Take care all


  1. georgai said,

    February 16, 2012 at 6:02 pm

    I knew homeopathy would be useful to you in some way. Lets hope it is cumulative and that there are other homeopathic avenues for you to explore.
    Anything that can help you snuggle on the sofa has to be good news. That will be so nice for you and Kiran.

    • mndestroyer said,

      February 16, 2012 at 9:41 pm

      Aye, looking forward to a snuggle :-). They do raiki at the hospice too so may give that a go!.
      Hope ur well xx

  2. scarley said,

    February 17, 2012 at 11:36 am

    loving what youve written so far – keep it going. dont fill the balloon up too much one flase move and you could be stuck on the ceiling – not sure they provide a tool to abstract you from the ceiling! xx

    • mndestroyer said,

      February 17, 2012 at 5:02 pm

      Will do, can usually find something to witter on about :-). Lo would be funny if we could explode it !!

  3. Reena said,

    February 19, 2012 at 12:09 pm

    Loving your blogs Adie, they are so full of feeling, I can almost hear you speak. keep it up and hope to see you soon. Reena xxx

  4. Martin W said,

    February 21, 2012 at 8:24 pm

    Hi Adie.

    G told me about your blog, and it’s been good to catch up with how you’re getting on. xxxx saying what she said to you when she went swimming brought a lump to my throat too.

    Hope you, xxxx and xxxx are doing ok – and had a nice Christmas.

    Take care,

  5. Jas Bhavra said,

    March 22, 2012 at 9:48 pm

    Dear Adie, although it is upsetting reading your blog, because we can also see how much you are struggling, it also makes us proud to see how positively you are dealing with each blow, and how inspiring your words are to the other sufferers of the same disease. We are so proud of you that words are not enough to express our feelings, and this goes for my beloved daughter and grand-daughter who are so lucky to have you as their family member. God bless. With lots of love. xx

Leave a Reply

Fill in your details below or click an icon to log in: Logo

You are commenting using your account. Log Out /  Change )

Google photo

You are commenting using your Google account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s

%d bloggers like this: