Every April a group of
#NHS
professionals make a short film about living with
#Parkinsons
This year it’s about physical activity
But who has been diagnosed the longest (watch to the end 🎬)
Music: License code: CCSE7YOQFLF0YQSM
#Danger
is definitely not my middle name, but never one to resist a mind over matter (or is that gravity?) challenge I've agreed to step in and wingwalk with the fearless
@MrsAnneTwist
, her bezzie Sandra and my
#TeamParkinsons
mucker
@MattEagles
.
So please sponsor Mama T 👍👇👍👇
Just had a right radical orcidectomy for testicular cancer
@Leic_hospital
Have taken my
#Parkinsons
meds and have had a welcome cup of coffee. Never tasted so good.
Great team couldn’t have been better. Thanks for all the messages of support.
#NHS
does what it does do best
Two years ago someone left a brand new road bike outside my house within a hand written message that said ‘Exercise is good for
#parkinsons
.’ Many miles later I look back and will never forget that ultimate random act of the deepest kindness.
I am a Consultant in Emergency Medicine with
#Parkinsons
.
I’m fully vaccinated and boosted. Vaccination remains an important step in protecting my family, my colleagues and my patients. It reduces morbidity, mortality and reduces ICU admission.
Walked into
#Neurology
outpatients on this day six years ago and was told I had
#Parkinsons
. Today I’m back officially opening my art exhibition and at the launch of the Live Well and Dance with Parkinson’s programme which is getting set up and running across Leicesterdhire
Dyskinesia on the first day of the Junior Doctor strikes in April 2023 (left). Minimal dyskinesia yesterday on the last day of strikes in 2023 (so much better controlled). I know it won’t last forever but I’ll take that this Christmas 🎅
#parkinsons
#bestpresent
Watching
@coldplay
playing ‘Fix You’ with Michael J Fox was iconic
The lyrics are a poignant reminder of a journey with
#Parkinsons
. A call to governments to invest in more research so the scientific community to fix us. Thanks for the shout out at the end, I’m being good
#cancer
I misjudged it, it was right in front of me and I didn’t see it. Should have acted sooner. My 14 yr old is now in a hospital bed with a likely
#COVID
related complication. Thanks to all
@Leic_hospital
for just the most compassionate care.
I have just realised that this year I will have been working as an EM Consultant
@Leic_hospital
for 14 years, 7 of them with
#Parkinsons
. The continued adjustments and adaptation provided along with the support and encouragement from
#teamUHL
has made this possible. Thank you.
Today I will briefly remind myself that 7 years ago when heard the words ‘It’s Parkinson’s Disease,’ I thought my life was over. But it wasn’t, it isn’t, it just a different one, an adapted one, one that has its own unique challenges and one that is there to be lived.
#parkinsons
8 yrs ago today I was told I had
#Parkinsons
. My world shook.
Everyday provides its own challenges due to the symptoms you can’t see but impact and are felt.
Thankful that I am still smiling, still moving well, still working and still being…
Thanks to all who support x
CT scan and bloods are normal so I’m officially disease free from
#testicularcancer
. Praise God 🙏🏼
Thanks to all who supported and encouraged me over the last 4 months.
Onwards and upwards 😀😀😀
This video which encourages people recently diagnosed with
#parkinsons
to
#exercise
was my pinned tweet but I just accidentally deleted after 6900 people watched it so am reposting it.
Jonny has been working as an A&E consultant for 10 years at the Leicester Royal Infirmary. But when he discovered he had
#Parkinsons
in 2016, he realised he had to change the pace of his work. Read his story:
So today I received the news that I have testicular cancer.
Staging scan completed and referred to Urology Cancer MDT.
Date of surgery TBC +/- chemotherapy
So thankful for a truly brilliant
#NHS
After 4 months off I get it go back to work and do what I love tomorrow. It’s hard to explain the feeling you get when you pull on your scrubs and hang your stethoscope around your neck. The
#NHS
looked after me so well now it’s my turn to look after others .
I recently updated my CV, took the plunge and applied for a new role to be incorporated into my
@Leic_hospital
job plan if successful. Shortlisted with the interview tomorrow. Don't let
#parkinsons
tell you that you can't. Feeling a little
#nervous
so wish me luck
#nevergiveup
In May I had to balance the risks of getting
#COVID19
vs coming back to work clinically while living with
#parkinsons
. I chose to come back and work
@Leic_hospital
, so when you get a phone call to say you are getting your
#COVID
vaccine tomorrow it is quite an emotional moment.
I turned 46 today. When I was diagnosed with
#parkinsons
aged 41 I felt as if I had been shattered into many little pieces, it was as if someone had pressed the pause button but over time people around me supporting me have helped me press play again. Glad I drew this today 😊
Heading off to
#Copenhagen
to play in the
#RayKennedyCup
, a
#Parkinsons
European football tournament, for ‘A Ray of Hope.’ Meeting the team and training together the first time later this afternoon with the tournament tomorrow. Wish us good luck
#RKC2022
#nevergiveup
So I had my interview 2 weeks ago. Very excited with the outcome. Thank you so very much for all the support.
Change is hard,
#parkinsons
is harder but I’ll work my socks off for you all.
We're delighted to announce the appointment of Richard Walker &
@CamilleBCarroll
as co-Clinical Directors of the Excellence Network. They are joined by
@jonny_acheson
in the newly created role of Director of Engagement and Communications. Full story here .
I always wonder what my kids think of my
#parkinsons
. Around the table last night my 9 yr old daughter quietly passed her broccoli onto my plate and said 'Dad, eating your greens is good for
#Parkinsonsdisease
so I am giving you all of mine.'
Official start date as the Director of Engagement and Communication of the
@ParkinsonsEN
today. Time for good communication, better collaboration and excellent care. It’s going to take time and I’ll need support from both healthcare professionals and people with
#Parkinsons
It’s been a dream since being diagnosed myself back in 2016 to increase the quality of care for people arriving to Emergency Departments who are living with
#Parkinsons
33 ED’s have signed up in the first 24 hrs.
#timecriticalmedication
#signyourEDup
Had to go into my own
#emergencydepartment
last night
@Leic_hospital
. I always knew the staff were amazing but saw it from the other side. First observation ED nurse wearing the
#bluebrain
badge supporting people with
#parkinsons
Within 5mins was asked when is your medication due
Advocating for
#Parkinsons
can be tiring, it can be frustrating, it can be all consuming and it can feel like wading through treacle at times so it was lovely to receive this award today.
I have no idea who did the nominating but thank you to whoever you are 😀
Onwards……
As the clocks went back last night causing a delay in people with
#Parkinsons
time critical medication schedule, Sunday will be spent catching up.
For PwP in
#NHS
hospitals and care homes it is vital this morning that they have their morning and subsequent doses exactly on time
In 2020 we set up a support group for people who are working or have worked in the
#NHS
and are living with
#Parkinsons
. Last night all of us
@WorldPDCongress
met for the first time.
#amazing
I never quite know how my day will pan out, how my dopamine levels will fluctuate but I will continue to educate when I can. 5 years in it’s getting harder but I will do what I can to live as best as I can everyday with
#parkinsons
So I’m a sensitive soul, one who read too deeply into something and interpreted it the wrong way, one who tried to cancel himself and get away. That’s what
#Parkinsons
does, but this work continues, it needs to be seen and heard. Thank you all for the messages of encouragement 💙
For the past 4 years I have tried to educate and do what I can to improve the care for people with
#Parkinsons
in hospital. I read a tweet yesterday that makes it impossible to for me to continue this online. I leave with my integrity intact, the work will very much continue.
Parkinson’s is tough going but when the sun shines on your face and you can feel some warmth, it just makes it that little bit easier. Have a great weekend you all.
This short clip shows two different sides of movement in my
#Parkinsons
one at rest and one when moving. It is to encourage those recently diagnosed that muscle memory and exercise is so very important. It still is 6yrs in.
Up and out early this morning…flight to Belfast on time. I never take for granted the responsibility and opportunity I have to talk about
#Parkinsons
. Although we are all different and there are likely many ‘Parkinson’s Diseases’ there is much education to do. We learn everyday.
For all who have followed me for a while on the whole I am generally upbeat and positive but the past week has been tough for a number of reasons. Could do with a little encouragement today.
If I designed a face mask this would be it.
Educating about
#parkinsons
is key to changing attitudes, just think how many conversations wearing one of these would start.
4 days post op for
#testicularcancer
Got out into the garden 🪴 today, sat with my eyes closed and just listened to the birds 🐦
Feel stronger with each day, moving better. Getting up from a chair 🪑 and out of bed 🛌 is painful, slow and hunches me over. Need to straight up
Two years ago someone left a brand new road bike outside my house within a hand written message that said ‘Exercise is good for
#parkinsons
.’ Many miles later I look back and will never forget that ultimate random act of the deepest kindness.
I have enjoyed my Twitter journey but sometimes you have to make a decision in the best interests of yourself and your family. Therefore I will be leaving Twitter on Friday. I will continue the work.
#parkinsons
This is Sayd, at the gym this morning he asked me how long I had given up the cigs for when he noticed a patch on my arm. 10mins later he had learned a lot about
#parkinsons
including medication through a patch. How can I help he said? Are you any good at
#sit2stand
I replied
Growing up in a broken home due to alcoholism, shaped me as a person. I had to take on responsibilities that were beyond my years. It taught me though to never give up and always appreciate the little wins. Those lessons have been very helpful as I live with
#parkinsons
everyday.
I have racked my brain for months. How can you sketch a picture that encompasses many
#Parkinsons
symptoms in one unisex drawing.
It definitely has a more modern contemporary feel to the one from 1886.
‘You have no idea what
#parkinsons
is like’ one of my patients said to me this week. I whispered in his ear ‘Believe me I do, I am living with it too.’
The thing about
#parkinsons
is that we all get put into the same Parkinson’s book but we are not all on the same page or even the same chapter. Services need to be designed so that they can provide personalised plans that enable and empower individuals to live well proactively.
Found this waiting for me when I got home 🏠 from work this evening. Thanks
@ParkinsonsUK
for posting the updated
#Parkinsons
symptom pin badge prototype. The writing is bigger and clearer on the new navy background. I can envisage conversations starting like ‘What are all these’
When I started to draw boys and girls names in the shape of an animal I decided that I would give every staff member
@Leic_hospital
on maternity or paternity leave one to say thank you for all they do. On Wed
@ElaineNewton79
gave birth to Alexzander and Amelia. Here they are.
This morning when I took my bike out of the garage it was dark and cold, After 10mins my fingers were numb at the tips. I just wanted to go home but we kept going. Then the sun started to come up. We stopped and took it all in. Not a sound. Beautiful.
When I was first diagnosed, I found it difficult to treat a patient with
#Parkinsons
as I didn’t want to see how I might progress with time.
I now see that I have a unique responsibility to ensure that they are looked after as best as they can be in all UK ED’s
#TimeCritMedsQiP
📢We've launched
@jonny_acheson
& team's Time Critical Medications QIP!
#TimeCritMedsQIP
Jonny's inspirational personal commitment to provide better care to those at risk from missing medication in A&Es has got
@ParkinsonsUK
backing.
ℹ️ Read more:
1 week post chemo today
Feel like my normal self again this morning 😀
Nausea settled. Appetite returned.
Hoping to hear the words ‘Disease free’ soon
30% chance of it returning on the left
Hard to ignore but I’ll take that for now
Enjoy today 👍
#testicularcancer
This is the most important tweet I have ever sent.
If you are living with
#Parkinsons
What aspect of healthcare would help you if you had access to it.
Outside of healthcare what would help you live the best you could everyday
At diagnosis what would have made a difference
After my 12 monthly
#parkinsons
review on Monday its been a week of reflection, a time to prioritise what's important, a time to accept that the medication isn't as effective as it was, a time to collectively decide the next steps to be taken, a time to keep the positivity going.
The last 3 months have been a tough and torrid time but I have started the road back to fitness.
3/4 of the way through a core strength programme and I managed an hour of walking football and 20km on my bike this week
#sweatforparkinsons
#exercise
I was asked to describe
#parkinsons
in 25 words without mentioning symptoms. This is what I came up with ‘Somedays I can somedays I can’t, somedays I will somedays I won’t, somedays I want somedays I don’t but an arm around me helps everyday.
#yopd
.
I’ve been in two minds whether to post this today but it’s the reality of exercise for me at 07.15. Sweat dripping, I physically look tired but I felt good inside. This is how I would sum it up
Commit to years, Sweat through the gears, Encouraged by peers
#parkinsons
If an asthmatic attends an Emergency Department acutely they get their nebulisers ASAP, why is it not the same for someone with
#Parkinsons
.
There needs to be a realisation that this is ‘a mobility emergency’ as well as controlling other symptoms.
#timecriticalmedication
Once as a junior doctor I was struggling with a very sick patient. Nothing was working, I needed a piece of airway equipment. When I turned round the
#nurse
was already holding it. I have never forgotten that and it happens everyday. Thank you
#InternationalNursesDay2020
When you discover that
@NHSEngland
have this week included
#TimeCriticalMedication
into their National Patient Safety Improvement Programme running from April 2024 - March 2027 that has to be a good day.
😀😀😀😀😀😀😀😀😀😀😀😀😀
#parkinsons
Got home from work, put my gym clothes on and headed into the garden to do
@thebodycoach
high intensity workout for
#Parkinsons
. 10 exercises 40secs each with 20sec break x 2.
Here is a snippet of how I got on….
In Dec I started a
#Pilates
class every Friday evening
@EveryoneActive
to increase my flexibility with
#parkinsons
. Hamstrings still tight and toes forward but this is progress as I couldn’t reach them before.
Had a
#Parkinsons
nurse review today, sitting talking with them and my wife how things have been over the past six months. Gently discussed treatment changes and we came to a collective decision. Conclusion these
#NHS
staff are pivotal to
#Parkinsons
services.
@ParkinsonsUK
A very Merry Christmas. Thanks for the encouragement and support this year, it really helps. Living with
#Parkinsons
is a daily challenge, from the seen to the unseen that’s why there needs to be a balance in funding future research and funding living today. Lots to do in 2023.
Getting up to exercise every morning needs
#motivation
even if you know 2.5hrs of high intensity can slow the progression of
#parkinsons
. But when you turn round before going into the gym and see the sunrise you are glad you did.
#MondayMotivation
Dear Substantia Nigra
I never asked for your neurons to disappear. I didn’t even realise until 70% or so of them had. So I will do my exercise each week to help you. To help the ones that are left and to help you make new
connections
#Parkinsons
Anything that helps get the message across that
#Parkinsons
medication is
#timecritical
.
A massive thank you to the 50
#NHS
CEOs who have pledged support so far to this campaign since 11th April and for the work to come.
Today I didn’t let
#Parkinsons
hold me back, I put myself out there, I challenged the boundaries, the perceptions and I competed. I competed hard, I gave it my all and you know what, I think I may just have held my own.
#NeverGiveUp
When we watched on the news that China built two hospitals from scratch for
#Covid_19
patients in a week, people said we can’t do that. Well we improvised and just did
#NHSNightingale
with two more on the way
#COVID19
#NHS
The Basil
#Exercise
Trilogy for those with mild, progressing and more complex
#Parkinsons
symptoms are now all together in this
@Youtube
playlist with links to the
@ParkinsonsEN
exercise guidelines. My hope is that they encourage everyone each and everyday
The Time Critical Parkinson’s Medication (Get it on Time) campaign is heading to Parliament next week to talk to the All Party Parliamentary Group (APPG) for
#Parkinsons
My summer is officially over and I’m back doing what I love. Caring for patients on the ED observation ward
@Leic_hospital
and working with
@ParkinsonsEN
to improve the care for people with
#Parkinsons
.
I had the pleasure of meeting ‘Mollie’ the therapy dog who volunteers at
@Leic_hospital
today. She was in the ED for staff. This work often goes unnoticed by the majority so I have sketched her this evening for her owner Jo just to say thank you.