Tuesday, 16 May 2017

Speaking for Myself

Language is what differentiates human beings from our animal cousins. Spoken language is the cement that binds us to other people. Communication between people is what enables cooperation, and builds civilisations. Moreover, man is a sociable animal, so we are at our happiest when with other people. Being able to communicate with them, build relationships and friendships is key.

Robbing a person of the power of speech must be one of the cruellest symptoms associated with MS. It is certainly personally, the one I dread the most.

Six months ago my lungs and speech were not in good shape. I was struggling to breathe properly and my speech was reduced to a mere whisper. My personality changed accordingly. I became very passive and introspective. Communication with other people felt like climbing a mountain, so a lot of time, I just didn't bother. It was as though I was imprisoned inside an invisible plastic bubble: inside it, to me my voice sounded perfectly normal, yet outside the bubble, to listeners, my voice was a mare squeak. I became a silent observer on the world, as it unfolded in front of me.  Emotionally, it was a real low point.

Clearly, I needed to take action. So I asked my GP to refer me to a respiratory clinic at the Oxford Churchill Hospital. I had been told that the clinic has a very good reputation.

When they saw me they ran a few tests, and measured my lung capacity as just 22%. No wonder I was struggling! I saw a very charming consultant, who felt that a Cough Assist machine would be of benefit to me. I was overjoyed at this, as I already had experience of using a Cough Assist device with spectacular results (see postings 'It's good to talk' (May 2015) and Henny Calling' (October 2014)).

I was issued  with a machine and given instructions for home use. All the carers at my care home were trained on how to use the machine – a very simple matter of placing the face mask over my nose and mouth, and switching on and off (all the correct settings had already been preset at the hospital by a respiratory physiotherapist.

My 'nippy Clearway Cough Assist' machine
I noticed improvement after only a couple of days. After several weeks of using the machine twice a day, my breathing and speech were immeasurably better. My friends kept referring to my ' new voice'. My gregarious nature was restored to me. My social life blossomed, and I revelled in my new ability to participate in group discussions and social situations. I felt confident about speaking to strangers, whether in person or on the phone. I lfelt as if I had been reborn into the human race!

After 3 months of using the Cough Assist machine twice a day, I returned to the hospital for a review. I was retested, and the good results confirmed what I already knew: –

Blood oxygen  Before  5.17

After 10 weeks  6.45

Vital capacity  0.64

After 10 weeks  0.71

Peak cough flow  Before  121

After 10 weeks  141

There had clearly been a marked improvement. Things were definitely going in the right direction, so much so, that my respiratory physio recommended I increase my usage from twice, to 3 times a day.

Unfortunately, very  little research has been done into the use of the Cough Assist machine with MS patients. However, the Oxford Churchill respiratory clinic are aware anecdotally, that the machine helps approx 3: 10 MS patients.. Of those 3 who benefit, it helps them (like me) rather a lot. The MS Society estimates there are 127,000 people in the UK with MS. Let's say about 50% of them may have lung, breathing or speech difficulties. If 33% of them could benefit from using a Cough Assist Machine, that's a potential 20,995 people who could benefit from the device.

If you are a person with MS reading this, and you have lung, breathing or speech difficulties, it may be worth exploring whether or not a Cough Assist machine, or similar device, could help you. If this is the case, I suggest in the first place that you speak to your GP and ask them to refer you to a respiratory specialist, who could advise on the best course of action.

Good luck!

Henrietta Whitsun-Jones

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