26
LIVINGLIVING
Moving on
But certainly not one to be stuck
in a groove, Johnson was due to go
back on the Accu-Chek Combo and
start doing DIY APS (do it yourself
artificial pancreas system), but he
says, "I went to a few events about
DIY APS and felt there was too much
mathematics in it for me. I met
various people, went to meetings
and felt that it really worked for
people who were happy to put the
work into it. I wasn't sure that I was.
Then I applied for Dexcom CGM but
couldn't get funding."
The Johnsons have two children,
a son and a daughter, who are both
now in their mid- to late-20s. Their
daughter, a doctor, works at St
Thomas' Hospital, London.
Remembers Johnson, "She came
back saying that the diabetes clinic
there was absolutely excellent.
I asked to be able to attend that
clinic and I went for a consultation
just before lockdown in 2020. I
was asked a series of questions
and given a score which indicated
whether I should or should use CGM
technology. I did qualify to use CGM
and they were very keen for me to
go on it, very keen to help. They also
suggested using an app called the
CamAPS; they wanted somebody
over 60 to try it out. Therefore, I
moved onto the Dana RS pump, onto
Dexcom G6 and the CamAPS app -
that's essentially an algorithm that
lets the bits of diabetes tech 'talk' to
each other."
Did Covid-19 get in the way? "I did
all of the training for these remotely
during lockdown," says Johnson, "By
20 July 2020 I got started on the
new system. It's been absolutely life
changing, it's another world. It's light
years ahead of other DIY systems
in my view. It is also attached to
Diasend so my wife can see my
readings, the clinic gets them too,
the consultant can check in on my
data anytime he wants."
How much work is this to use,
you may wonder. "The only thing
you need to do is tell the system that
and maintains good control, "In fact,"
says his dad, "He gets a bit hassled
when I try to advise him to try out
other systems, he's happy enough on
what he's got!"
So, nearly a year since going onto
the Dana RS pump, Dexcom G6 CGM
and CamAPS system, Johnson says, "I
still don't have great hypo awareness,
but it's quite funny - CamAPS has
a crying baby sound for when I get
below 3.9mmols/L, which certainly
grabs the attention, so I feel safe!"
RESOURCES
Dexcom (below)
www.dexcom.com
Dana pump
advancedtherapeutics.co.uk
CamAPS FX app
www.camdiab.com
you're about to have some carbs, is
called a 'carb announcement'. From
from that information, the system
suggests the bolus amount then
automatically gives it to you. It also
announces hypos too and will stop
the delivering insulin. It's dead easy
to use and anyone can follow it. I now
have a daily target of 4.9mmols/L.
The system aims to keep me at that
and as a result my HbA1c has come
down to 6.2mmols/L. I rarely have
spikes and I'm in range as much as
83% of the time. My wife says that
on this system I'm generally fitter
overall than I used to be, and that she
does not worry about me as much
as she used to. She also says that it's
transformed our lives, freed up the
family and that they are all thrilled
with it too."
Family ties
Keeping it in the family, Roy and
Fionnuala Johnson's son also
developed Type I diabetes, at the age
of 13 just like his father. He ended
up being 6'4" rugby player and a
barrister. He now uses an Accu-Chek
pump and a FreeStyle Libre sensor
Roy Johnson with his CamAPS app on his smartphone.