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Alzheimer’s and muscular dystrophy. February 5, 2009

Posted by phoenixaeon in Terry Pratchett.

Last night, I decided I’d sit down and watch the Terry Pratchett programme Alzheimer’s and me. During one part of it he went to a support group and met a bloke who had been diagnosed with posterior cortical atrophy (PCA) (the form of Alzheimer’s that Mr Pratchett was diagnosed with) four years previously, and he was listing all the abilities that we take for granted that he has lost due to the effects of the disease. In the four years since he had been diagnosed he had lost the ability to read, write, tend to his garden, and other things that I can’t quite remember now. But that got me thinking.

Ten years ago I had my first muscle biopsy to try and determine why I couldn’t stand up from a sitting position as easily as I should have been able to, why I had trouble walking up stairs, and why I kept on falling over for no reason. I had seen my GP 8 years previous when the symptoms started making themselves apparent, and on numerous other occasions during those 8 years, only for her to tell me that I was a hypochondriac and that it was all psycho-somatic. It wasn’t until a new GP took over her practice that he noticed the trouble I had with standing. Anyway, enough of the early stuff, that’s not what I wanted to talk about.

After listening to the abilities that this bloke had lost since his diagnosis, I started thinking about how the muscular dystrophy had affected me since my diagnosis in May 1999. Back then, I could walk without worrying about my balance, if I fell I could stand up on my own (albeit with a struggle), I could walk upstairs (although I was told I looked like I was permanently drunk due to the way I had to walk up stairs), and I had a method of standing from a sitting position. Now I use a wheelchair when I go out (something that I have had to depend on over the last 3-4 years) and I have to use walls to support me when walking around the house. I need picking up if I fall. I can no longer walk up stairs. I have special seats that lift me up to a standing position. It’s very scary thinking about that, as I’m watching my independence leak away. In a matter of fact, I’m hardly independent at all now, and that kills me. I know if I didn’t have this illness I would be gallavanting all over the place (like I was 8 years ago) and I wouldn’t feel guilty about being a useless Mum. It breaks my heart that I need help if I want to take Princi out, because I can’t push myself around in the wheelchair for long periods of time and watch Princi at the same time. I feel like I’m killing her childhood because we can’t do as much as ‘normal’ folk.

Bah! Need to shut up now.



1. I used to have such balance but I don’t know where it went. « An alien voice under a duvet of dreams. - September 2, 2010

[…] have blogged about this before. How there are things I can’t do now, that even six or so years ago I could. Case and point: […]

2. skippy - February 10, 2009

Tis my job to remind you of what you do do for Princi tho which ultimately will be waaay better than all those “normal” folk.

I hope you know I’ve got you down for tutoring bean in English if he needs it 😉

phoenixaeon - February 10, 2009

Fine by me… Let’s see how this English lit/lang degree goes. 🙂

3. skippybird - February 5, 2009

What is the definition of normal lady?

You might not be able to take princi out on a whim or without major planning but how many kids with “normal” parents spend the time you do together reading and learning, talking, laughing? How many of those kids have to watch their parents beating each other up or drunken violence or suffer abuse from their “normal” parents?

I think she got the better option myself. xx

phoenixaeon - February 5, 2009

Thanks hon. If I were a bloke, that’d be my kick in the nads!

Off to eat some Japanese aduki bean cakes. NOMNOMNOM!

4. picasso36 - February 5, 2009

Hmmm Ally,you have just given the kick in the balls I so rightly deserve.reading Byrons poem in iambic tetrameter I relised that I just cannot work the stresses out( da DUM etc)So,I sit here feeling very sorry for myself thinking I should just go and stack shelves for a living.I am furious with the OU that there is no tutorial on this.I just cannot do it-I am totally F*cked and quite frankly a bit depressed.

Luckily ,a timely ball kick has made me realise even though i will fail badly it’s not the end of the world.
I missed the programme,had intended to watch it.I do have a degenerative disease as you know but I am lucky(if that’s the right word) that i still have restricted mobility-although that will change unless i drop dead in the meanwhile.I sort of understand how hard it is to have to rely on people,I do,although to a much lesser extent than you.
Quite honestly,i think kids adapt pretty well.ok you cant play football with her,but you can teach her poetry,arts,etc etc.Some would say thats more important than obvious physical activities.As princi doesn’t know any different,you don’t miss what you have never had.
How many able bodied parents our as concerned about their childs welfare as you?Willing to bet theres loads of scallies out there who have all the ability, but not your mental strength or the love you have for her.
However shitty your day is,i hope it gets better.
For what it’s worth i think you are pretty inspirational and talented.Coping with MD,doing a degree,and doing a damm good job bringing up your daughter.Don’t be too hard on yourself.

phoenixaeon - February 5, 2009

It wasn’t meant to be that! It was just me thinking out cybernetically. Can’t say out loud, because I’m typing, not voicing. I wasn’t meaning to sound sorry for myself either. Bum!

And don’t put yourself down about the poetry. What Byron poem are you on about? Send it to me on email, and I’ll highlight the stresses for you. If it’s iambic, it’ll be easier than if it were to have trochees, spondees or the like. That’s when I get mixed up. I think you’ll do okay, so don’t fret!

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