April 2005
This month has been rather turbulent,but at the time of writing,everything has settled and I'm in a good frame of mind. We attended a MND study day organized by the MNDA aimed at improving local services. There were about 40 healthcare professionals there and I gave a talk to them about my own experiences with local services and the problems we've had. Then I showed them a Powerpoint presentation created by Peter Charman,which they were very impressed with. Thanks Pete. Let's hope something positive comes from it and local services for MND improve. I am now on the waiting list for environmental controls by SRS Technology, I don't know how long I will have to wait but when I get them,I will be able to operate the tv,video,dvd and hifi. It will be operated from my wheelchair control switch and I'm also hoping to integrate the JVC Mininote speech computer with it. I am at the stage now where I don't like going out so much. Getting transport is a major problem,the local authority Dial-A-Ride has to be booked about 3 weeks in advance to get the day and time you want.There are some taxi firms that have wheelchair accessible minibuses but they are very expensive. We keep looking at getting our own transport through Motability but,for the type of vehicle we require,a large deposit is required,which we ain't got so that's that! Also if I go anywhere without Sharon or my carers,I find that people don't really understand my care needs,even when they have been told. So I just end up getting stressed and frustrated,that's why I prefer staying at home where I'm happy. We sometimes go to the pub up the road for a pint or two if the weather is fine. I've just realised that the website and my journal have been going for 2 years,this month and I will have been diagnosed with MND for 3 years in July. All I can say is..........WOW,WHAT A JOURNEY!
May 2005
This month has been rather quiet,for a change! Sharon has been away for a much deserved rest,while I stayed at home with my two trusty side-kicks. I prefer it that way to me going into a care home for respite,much better for us both. I have been praying for Pete Charman who was rushed into hospital with pneumonia caused by MND. He now has a tracheostomy and is on a ventilator,which he had wanted for ages but,as usual, it took a medical emergency for them to get their arses into gear. He is still in hospital,but doing ok,I will continue to pray for him for a speedy recovery and return home. You can read about Pete's battle for trach and vent HERE and his hospital adventures HERE. My speech therapist,at the recent study day,called MND "The Too Late Disease" as services and medical interventions always come too late in the disease's progression. Thankfully,some are working to rectify this situation but I fear it's going to be a slow process. I have decided that I will have a feeding tube fitted sometime this year as,although I am still eating and drinking ok at the moment, my chewing and swallowing are getting worse and I want to have it done before my breathing gets too bad. I will speak to my neurologist about it when I visit the MND Clinic in June.
Late addition: Photo of me in my new wheelchair,working(??) on the laptop using the Smartnav head mouse.
June 2005
I mentioned Pete Charman last month,well he's back home now!! With his tracheostomy and VENTILATOR! Yes you did read right,a person with Motor Neurone Disease,in the UK,living at home on invasive ventilation and all done by the NHS. Pete,you've lit a shining beacon of hope for all PALS in the UK,who wish to tread that same path. I attended the MND Clinic this month and I've not got to have the PEG tube done yet,but I've got to take more oral supplements to keep my weight up. So at the moment I'm trying different supplements to see which ones I like,some of them are disgusting,lol. I will probably still have to have the PEG done later this year but we'll see how it goes. The 34 mile round trip to Nottingham is getting too much for me now, it really takes it out of me,so more of my regular care will be local now and just go to the MND Clinic if I need to. My speech has got even worse with much repeating to be understood,so I am relying more on speech devices and on simple yes/no answers. I now tend to only speak when I have to,we all take speech so much for granted,it's only when we lose the ability that we realise what a precious gift it is. I realize now how much we waste this gift on meaningless rubbish and gossip. Now I'm taking the supplement drinks I've stopped the vitamins,etc, now the only pills I take are the happy pills! The 28th June saw 2 hours of amazing thunderstorm activity from 21.30 until 23.30,see my new WeatherWatch page for some impressive lightning photos taken by my cousin, Andrew. I do storm chasing in reverse,I have to wait for the storms to chase me!
July 2005
Well,I'm still waiting for the environmental controls to be fitted and I've been told that they can't or won't integrate the Mininote speech computer in with it,which was the main thing I needed. Oh well,at least I will be able to change channels on the tv,I just won't be able to communicate. I have found that when I'm asleep and I turn over onto my back,I wake up because I can't breath properly. So now I sleep on my side with a pillow behind me to stop me going onto my back and I sleep much better now. I have now decided to have the RIG (Radialogically Inserted Gastronomy) feeding tube inserted in September. This involves a small operation to insert the tube into my stomach through the abdomen and a 3 day stay in hospital,which hopefully won't be too bad? What else has happened this month? Not much! I still spend most of my time on the computer,on the Build-UK and Braintalk forums or chatting to friends. People with MND and their families are a special group of people and I admire,and have been inspired by,all of you.
"Life's battles are not for any or everyman, but it is for those who think they can."
"Poverty is not being without money, but being without hope."
Copyright © 2004 - 2005 Rob Marshall