How does it feel to have bulbar onset MND?

Standard

 

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.

2019-02-06 00.53.19

 

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.

 

2019-02-04 20.49.47

 

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.

2019-02-04 21.17.04

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.

mike head on hand

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. 

 

 

 

5 thoughts on “How does it feel to have bulbar onset MND?

  1. Maria Godebska

    He describes it very clearly, very well. It sounds insurmountable, but you all approached each hurdle and dealt with it, with pragmatism and good cheer.

    Liked by 2 people

  2. Sue Porter

    What an amazing pair you were you saw the setbacks as challenges to overcome . That takes such courage and you never lost your sense of humour and it must have been so frustrating for you both . The little things we all take for granted being taken away BUT you never lost your strong faith in God. Michael will never be forgotten, what an overcomer! and an example of how to ‘walk the walk ‘ and not just ‘talk the talk’ ( If that makes sense Julia ) Think of you often Julia and know you must miss him so much take comfort though as I mentioned before you made him so happy .

    Liked by 2 people

  3. Julia… thank you for belatedly posting this, life can be so hard. I was stopped recently on my way home from Waitrose in my new wheelchair. The guy said that he had seen me and wanted to know more about my wheelchair as a relative had MS. He asked what I had wrong with me. I said “Motor Neurone Disease”, he said “Great! that’s what that guy in Cambridge had, err?” I said (using my Speech Assist App), “Stephen Hawking”…. Xx

    Liked by 2 people

  4. Don Winterhalter

    Thanks for publishing this, Julia. Michael really did make his struggle quite invisible from the outside, and the creativity that you both brought to bear was wonderful. I hope life is being kind to you.

    Liked by 2 people

  5. There are heroes in the public eye; their bravery is well acknowledged; historians will write about them. There are unsung heroes, like this couple I know in Abingdon – Mike and Julia – where their heroism may not be recorded by historians and taught to children in future generations.
    But their story deeply impacts the lives of those around them, and there is a record of the ages in which their story is written. Nothing they have done, with courage and grit, has been forgotten in that chronicle, no private moment of determination. And we will get to celebrate them throughout eternity.
    It’s an honour to know them.

    Liked by 2 people

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out /  Change )

Google photo

You are commenting using your Google account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s

This site uses Akismet to reduce spam. Learn how your comment data is processed.