snakes, slowly

Progressive Supranuclear Palsy is a terminal, degenerative, brain condition. There is no treatment and no cure.

My mother received this diagnosis in 2007. Surprisingly, it wasn’t a hard to hear diagnosis- we didn’t understand. We didn’t know enough to be freaked by “Progressive”. We’d never encountered neurological illness, so we still expected that there’d be something to be done. That delusion wasn’t helped by the fact that the consultant gave us the name and no other information. No fact sheet, no phone number, no website, no specialist nurse. We went home, happy to have a name. Eventually, with the help of Dr Search Engine, reality began to dawn. We found limited information and support. Before long, we learned that we were the experts- how could that be possible?

medusa

Medusa, Carravagio

PSP is like a series of snakes, active in the brain. Sleeked. Slowly, deliberately, without compassion, squeezing themselves round proteins and neurotransmitters, tangling the communication systems. Squashing the the ability of the brain to tell the body what to do. A slow onset paralysis.

Medusa, a beautiful woman transformed into a mask. Powerful and raging, affecting anyone who looked at her.

The eagle eyed reader may have noticed that my input to the Health Activist Writer’s Month Challenge has been, at best, sporadic. It seems I’m not yet beyond setting unrealistic targets. This post was in response to #HAWMC prompt 8 “If the health condition of a loved one was an animal, what would it be?”

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20 thoughts on “snakes, slowly

  1. bad enough for me reading about this harrowing condition, so I can’t imagine the amount of your pain then and now, having learned what this PSP entails… The total disregard by the Caring Profession speaks volumes too… Thank God for the Internet, at the very least it gives information when needed… xx

    1. Most doctors and Allied Health Professionals will never have encountered PSP- the good ones are those who make an effort to find out more when they need to!

  2. “Something to be done” turns into nothing we can think of, nothing they can find. My heart breaks for you all and the helplessness suffered. Is suffering is another kind of doing? Loving and learning you do not turn aside. You are still there with the HAWMC. Sporadic is good enough to keep us hearing you. xx

  3. Aunt told me last week she has age related macular degeneration. Her sight is going. I know she is scared, because she told me several times. She also oiked out an advert for a ‘miracle cure’. Her doctor has said she could buy it. I looked it up on the web. Seems like snake oil to me. A doctor friend confirms there is little that can be done, maybe injections, but as she is ninety the NHS will deem it is not cost effective to give her the treatment. She could live for years, lose her independence. Snakes indeed.

  4. When you put it into words in the way that you can only someone with a heart of stone would not feel the added torment of ‘little there’ and ‘few to turn to’.

  5. Horrendous to have the dignosis ‘dawn’ like that, Fiona. I feel so sad for you all. My brushes with the NHS on my parents behalf have been baffling; I cannot imagine what it must be ligke trying to get people to elucidate in a matter of an illness that is terminal.

    1. We were fortunate to happen across a knowledgable, caring, charity worker who became a friend. Not everyone is lucky enough to find that. I simply can’t begin to imagine what we’d have done otherwise.

    1. I think some medics are very focussed on their ‘bit’, and forget that patients are people. There is a real need for more support for families about the implications as well as symptoms- can the person still drive, or work, or be left alone?

  6. Using Medusa as an illustration seems to be an excellent example. I simply can’t imagine doing your own research in the early stages of something so frightening. You have become an expert, sadly, but I can imagine you are a big support to others. That’s a shame, too, actually–that there is such need. oxo

    1. I did, Isobel. You may not be surprised that I had him diagnosed before they mentioned PSP (what with me being a world class neurologist and all that…) ;)

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