Never Give Up.......Motor Neurone Disease.

Thursday, June 26, 2008

A new phase

It is time to laugh out loud and to say “bring on the next round “. I have survived and passed the sentence of time ( 2 ½ years ) placed on my body . But at what cost . . . I am now more or less chair bound ( lazy boy ) with my laptop beside me on a small table in the lounge. I find walking with the walking frame very hard work and tiring.
Even just the act of being showed can leave me weak and breathless . That includes getting in and out of bed . Any thing that requires too much energy is out of the question . . Speech is now a major problem and solid food , well , can’t remember when I last ‘ had a meal ‘. oh for a good steak, medium rare with well done chip’s . I laugh to myself. . . . .
The body in general has gotten a lot weaker . Loss of body muscle is plain to see . Sleeping is also a problem in that having no body fat over my tailbone makes it difficult lying down as this is a pressure point and because the body is weak I find it hard to turn on to my side .
Right about now you must be thinking how do I survive each day and the answer is because I have to , not only for myself but for those around me . Life is some thing we all take for granted and we shouldn’t . when you have to fight for it then you know , despite your condition , its worth the hour by hour effort on your part .
Now I have gotten all that out of the way how am I today . At the moment I am feeling good and doing this entry for my blog will be letting people know I am still around . I am using a program called “Viking Pro 3” to type all this in and one finger .
ALS/MND affects all those with it differently and so we each have our own path to follow , our own ups and downs , mentally and physically . I like to think that my condition is just maybe another phase in my life . . . . . .


  • Hi, Robert - i just wanted to leave you a quick message and let you know I have come in contact with your blog and will spend some time reading through it. It's a wonderful thing for you to be blogging - someone will read what you are saying and know they aren't the only one dealing with this. I googled in "blog" and "ALS" to happen on you. Did it because my beloved twenty-two year old nephew has ALS. I'm an American who lived in Eastbourne and Wellington for seven years - you'll understand why, no doubt, when you see my last name - so the fact that you live in Upper Hutt is also of interest to me. I wish you all the best - and I honor your bravery and urge to communicate. I'll keep an eye on your postings....
    Regards, Karen Dellabarca.

    By Anonymous Anonymous, At 5:19 PM  

  • Wishing you well through this phase of "our shared" nemesis......

    Keep on keeping on Robert....

    Kia Ora


    By Blogger Bill Gardiner, At 5:06 PM  

  • Hi Bill
    I am in Te Omanga Hospice at the moment. Not so good this week but tryin to stay ahead...

    Never give up


    By Blogger Robert, At 4:08 PM  

  • Robert,I hope you are ok.

    I check your blog every other day. Am worrying now, since you haven't updated.

    Keep fighting the good fight Robert. I'll keep fighting the same battle with you.

    Kia Kaha (Be Strong)

    By Anonymous Bill, At 11:36 PM  

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