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.
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| 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
