vinyarb- you just have to read it

As a person ages, their immune system breaks down. Backs get sore, legs get wobbly, eyesight deteriorates, and you generally get lethargic easily.

My mother is suffering from Multiple System Atrophy (MSA), a rare degenerative neurological (brain) disorder affecting roughly 0.005% of the population. Put it another way, 5 out of 100,000 people are estimated to be inflicted with MSA.

There is no  known cure for the disease, and upon the onset of symptoms, remaining lifespan is at an average of 9 years.

Whenever she goes out (which is limited to sessions at the physio, or acupuncture), she needs a wheelchair. As she's encouraged to try and exercise whenever she can, she walks at home with a walking aid. With an aid, she takes an excructiating 15 minutes to make her way from the living room to the toilet.

She is also losing control of her speech, having to repeat herself several times before we can understand her.

Her frustrations and pain are something we as family members can never imagine. As we work and complain how 24 hours is never enough, I feel each 24 hour day for her is probably 12 hours too long.

She can't sleep more than 5 hours, so she wakes at 3am. But she can't get herself up. So she waits from 3am till 7am, where my dad and/or the maid wakes up to help her wash up. During this time, I dare not imagine what she thinks about.

She has breakfast, then watches tv. She has lunch, then watches tv. She has dinner, then watches tv. Because there's really not much else she can do. She doesn't want to go out, because her prideful nature will not allow others to see her like this.

She desperately seeks a cure, but we can't bring ourselves to tell her the prognosis. On the other hand, I believe she does know.

She tells me God is punishing her, and she doesn't know why. I don't know how to reply.

She tells me she cannot speak properly. I tell her as long as we understand, its ok. But I know its not ok.

My mother's deteriorated speech is compounded by the fact that my dad's hearing is also not that great. This makes communication between them difficult at best.

We can offer support, love and concern. But ultimately, the journey is hers to take alone, because we never truly feel what she feels.

Its understandable she's depressed. I would be, too.

I admire people who remain optimistic and cheerful in the face of terminal illnessses. I admire how they have accepted that their time is now limited, and proceed to do/see/experience things that they've always wanted, as far as they can, and leave happy and contented rather than embattled and bitter.

I admire how they fight to live another day, so they can live each day fulfilled and satisfied.

It takes great strength and courage to see the silver lining in every storm cloud. For it is much much easier said than done. I wish mum can be like that. To tell us what she wants to do and see instead of counting the seconds each day.

The fact that we each have 24 hours a day is handed to us. But how we play each hand, is entirely up to us.

Depression's a scary and lonely road. I hope no one ever has to go down that route.

Mum, I hope you find the strength in you to see beyond your pain, and view the world through rose-tinted glasses again. We all love you, and we're all trying to help.

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Comments (1)

• |213.71.169.xxx |2010-03-10 16:58:48 ST  - Multiple System Atrophy (MSA)
  Hi, my mum also suffers of Multiple System Atrophy (MSA).. we just get to know it.
  She has to sit on wheelchair as her blood pressure goes very low when she stands up.
  Now, she can't speak well & have sleep problems too.
  She is sad & depressed.
  I hope I could help her but I can't think of a way.
  Do you have any suggestion that maybe you had tried before?
  Rgds,
  ST
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