How does it feel to have bulbar onset MND?

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Michael wrote this for his blog in December last year but didn’t get round to publishing it. 

At the moment my arms and hands are getting weaker. I had an upset with my ice cold water; Julia was woken up by me whimpering because I had just spilled half a glass of iced water over my PJs. Since then we have used a syringe to help me not spill any and sometimes I can manage on my own.

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I stopped locking the door on the loo long ago so Ju has done a nice poster to protect my dignity. I have trouble getting out of the loo; those round handles are hard to grip when I’m tired.

 

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My joggers are now impossible to pull up. When visitors are in the house I have to ring the bell in the bathroom for someone to come and help rather than walking round the house with my bum flashing until I find someone to pull them up. Dan has even done it. He says it’s like Dexter only on a large scale. Even the loo roll is getting to be a challenge but it’s a big step getting Julia involved in that task.

Breathing is getting harder. The BIPAP is definitely making a difference. At my respiratory physio review at the Churchill hospital Oxford the arterial blood tests were best they’ve been in a long time. They confirmed my leaning forward to catch my breath is a good technique and showed me how I could use a fan to trick my brain into thinking I am getting enough air. My oxygen sats remain high at around 97% even when I feel like I’m not getting enough air in.

The collar is getting tricky. Last time we put on I couldn’t breathe and Julia watched me get red on the face before she loosened it.

Getting out of bed is becoming more difficult. I launch myself form the bed feet first and Julia sees my head disappears, then I’m in trouble. So they got me handle for the bed.  It works most times but there still needs to be the launching towards the floor. Even getting in to bed is difficult as I can’t push my pillow up.

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I’ve found that I haven’t gone out except the odd appointment so the MNDA OT, Jenny, is getting me a wheelchair that supports my head next week. Dexter likes go for “a little walk” and I’d like to join him.

It is a bit frustrating not being able to do things with your hands and arms and it’s tricky supporting my head. Ju has to put my hand on my chin and my elbow on the arm of the chair but my neck is still constantly bent.

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Michael’s ingenuity and determination was remarkable. Every new problem meant we just had to find a way round it. He didn’t complain. We miss him terribly. 

 

 

 

Lost

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I tried to be upbeat but lost is the word that applies today.

Lost without him.

Lost, directionless, bewildered, wrecked, rudderless, I have no compass.

Lost in my home, my familiar landmarks have gone.

We lost Michael on 16th May 2019 at 18.25. It was sudden, shocking, unbelievable. I miss him with a terrifying ferocity.