Out of crisis and back to LIFE
I had two very different meetings on Friday which gave me a very significant jolt I think for the positive. Firstly our lawyer who is working on the Power of Attorney document came for the signing and I found the act of signing it so hard…it has to be done but I am not ready […]
My internal struggle – guilt versus rest
In the meeting where he told us I had what appeared to be PSP, he made it very clear I had to put the brakes on working. It is happening as we speak but it was in stark contrast to previous discussions when work was advocated. The strong instruction from the Neurologist who I know […]
Wouldn’t it be good to know 100% if it is PSP?
I am so often asked by people ‘Is it definite?’ I also ask myself the question often…”but what if it isn’t” – wouldn’t I like to know. As I start writing this blog I am not fully sure what I am going to conclude because I do have mixed emotions about the topic. First, let […]
Time and Times – Quality not just Quantity
There are many clichés associated with time and many wise sayings. Over the course of my life, I have paid little attention to them—many of us have heard them and ignored them. One of them that I am now paying very close attention to is another famous line which I now embrace – Quality not […]
Makes blogging worthwhile
“I wish my late husband had had the wherewithal to relay his experience of PSP in such rich detail. I can tell you, he was the unconditionally respected center of our family until the end. He never lost his mental faculties, but the physical barriers stole his ability to communicate verbally. There was always love […]
New Week, New Energy, Reenergized Faith….
“Those who have a ‘why’ to live, can bear with almost any ‘how’.” This is one of the really inspiring quotes from Viktor Frankl. He survived three concentration camps including Auschwitz – he has the right to say it. I think he is right. We had a lovely weekend as a family, friends have been […]
Dignity….my fear and my action plan….
This is possibly the most self-centred blog I have written to date. It is at the core of my fears and wishes for the future and I know it potentially comes at a big ask and at a cost who may have to care for me, hopefully a long time into the future. It related […]
From Giving to Taking: Accepting Help in My Fight
There is no question in my mind at all that giving is better than taking—to me, as a somewhat flawed person. I have always had a pathological dislike/fear of being a taker. I know where it comes from and I understand why, and that is a subject in itself not for public airing, but whether […]
Therapy: The Consultant Who Finally Took Advice
At many times in my life I have debated whether I should discuss matters with a therapist or not. There have always been pros and cons as far as I was concerned and I am not revisiting previous decisions. In 99% of cases I have tended towards “I don’t need help”, “What use is talking […]
Laughter is the best medicine…
“Laughter is the Best Medicine” I have always had issues with this phrase… NO MORE. It is true for me anyway, and it is not a question of ‘To laugh ot cry” – it is I guess in an instance where you have an alternative treatment available in the form of a pill, fluid, or […]
It’s okay – I also don’t quite know what to say….
For good or bad, I have decided to be relatively open and transparent about my journey. The blogging has certainly helped me selfishly and at times been hard for others. Overall, I think there’s a net benefit to it, for me and others. I think it opens a window for people with a condition like […]
Am I scared?
This is a question I’m sure many people ask themselves about their eventual years of aging. I remember thinking about it conceptually many years ago and when I was diagnosed with PD. In the last few weeks, it has become a much more real discussion. The macho answer is to say “No.” Probably the person […]
24 hours – flirting with danger and yet such a normal day
Time flies when you’re having fun. Who would have thought that life after taking a step a little out of the fast lane, stopping to drive, and finishing your relationship with Grape/Malt Alcoholic beverages, which you loved, would be so vivid? Yesterday was a day I initially thought, on waking this morning, very little happened. […]
L’chaim – To Life, a strange alcohol experiment and a reboot
I have not yet done any investigation into any possible tie to my current condition or a virus or pure random chance, but today saw one of the funniest experiments I have ever taken part in, and I have to thank my neighbor—let’s call him Dr. Y. A.—for his brilliance of thought and use of […]
PD/PSP- It is a team game, doubles pairing and an individual sport…
I love sport and always have, and as I sat awake this morning, I thought about what type of game I am part of at the moment. Is it a team game, an individual sport, or a doubles match-up? It is all three. If you can bear the analogy for a few minutes, read on. […]
‘Appears to be PSP’ – Actually a positive thing and a call to action
One week into the ‘Appears to be PSP’ diagnosis and I am coming through the denial and grieving stage and am actually seeing it bizarrely as a positive moment. Don’t worry, I am genuinely not insane…please take the time to read and hear me. I must say upfront that I can only talk here in […]
Blown away, a little embarrassed and grateful
I had no idea before today started that I would create a monster. It certainly wasn’t the plan, but it seems that way. It is embarrassing on so many levels, but I am truly touched, grateful, strengthened, and humbled. I debated with myself whether to blog on the topic of my new diagnosis. On the […]
“Life goes on” – Finding Light in the Darkness: My Journey with a New Diagnosis
Life is certainly strange. It is midnight, and I have woken up from a short sleep. I should logically be scared and riven with complete worry. I won’t go into details here, but my specific current ‘probable’ diagnosis of a Parkinson’s form of PSP is scary, to say the least, and it has not been […]
Driving – Letting Go of the Wheel: Finding Hope Beyond My Love for Driving
Driving is something anyone who knows me will know that I simply love—or should I say loved. I truly loved it, however rational or irrational. The freedom, the independence, the acceleration, the control—whatever it was, I loved it. Some of my most favorite moments have come in the car. Sadly, this has now become part […]
Last post for a while – It is probably not actually PD…unfortunately
This is a blog entitled Fighting Parkinson’s…so I need to declare that after recent developments it looks like the probable diagnosis is not actually Classic Parkinson’s but a much rarer disease known as Progressive Supranuclear Palsy or PSP for short. Sadly it is a much more aggressive disease in many ways and tends to evolve […]
4-4-4 – Learning to Breathe like the Navy SEALs or like me 😀
4-4-4 – Learning to Breathe like the Navy SEALs or like me 😀. What t do I mean by learning to breathe? Let me give some context. Life can be overwhelming. More and more gets put on my shoulders with challenges and tests coming from every direction. Recently, it has felt simply staggering. Health issues […]
YEH – It’s official – My Garmin told me I am actually 2 years younger
I am coming up to 5 years with Parkinson’s, and this morning I received a notification from my Garmin saying I had won back another year and my fitness age had come down to 47.5 instead of the 49.5 I am. I actually didn’t know about this feature – but if my Garmin watch says […]
A Moment to Say Thanks
A moment to Say Thanks – I admit it, at the moment I am a little bit grumpy. PD, a painful infection, and yesterday lots of pain from the cannula site of the Vyalev / Produadopa pump led me to change the cannula twice. Despite this, the overwhelming thought I have is one of thanks. […]
Parkinson’s – it is certainly not boring
This disease is popularly known as the ‘Disease is the gift that keeps on taking’…but one thing you can say for sure is that it is not boring. Whatever you plan for, this disease has other plans….fairly constantly. For someone who is a bit of a control freak (my wife and kids would add their […]
Faking it – are you actually serious?
This is dedicated to anyone who is surrounded by a small fringe element of unfortunately foolish, selfish, and otherwise ignorant family and supposed friends. A couple of friends mentioned in a discussion yesterday that they had been accused by ex-partners, kids, and others of faking it. I am sure people have asked the same about […]
Finding Light in Dark Times: Coldplay’s ‘Fix You’ and Michael J. Fox’s Inspiring Performance
Parkinson’s? …but you don’t have a tremor
The Tremor – Many people believe this to be the tell-tale sign of Parkinson’s. I am at least grateful that my tremor is hardly noticeable most of the time. In fact, if I check myself right this minute, there is no noticeable tremor in either hand, although my right hand does shake when I clench my […]
My current verdict of the Pump – in awe but I totally get it is not for all ….
I love the Produadopa/Vyalev pump – no question. It has made a huge change to my life and I am a strong advocate, but it is absolutely not a magic bullet, and I have seen a number of people really struggle with it. It is time in my view to present my view as it […]
PRO-PD – What is the best/worst food, supplements and food behaviors
Impact of Diet and Supplements on Parkinson’s Disease Progression – best/worstu – A very interesting piece of research by the well-regarded Laurie K. Mischley and team sought to identify the best/worst foods to eat, supplements to take, and dietary behaviors for individuals with Parkinson’s Disease (PD). It was published in 2017, but I was just made […]
All from a pair of Airline Socks :-)
Airline socks…yes. Some of you may know that when you fly a lot, you are often given a pair of socks. This morning, they volunteered to give me inspiration for a much-needed post for myself. I have traveled a lot (and that is an understatement), and I am good at packing. So, to wake up […]
Lighting can strike twice – the norm
We need to prepare ourselves for the fact PD doesn’t exist in a clean room/lab – the norm is that lighting strikes twice and often more
Reality darker than horror, richer than fiction
Maybe it is the disease and maybe not but reality is so much darker than horror and richer than fiction
Diet choices – It can’t hurt…try it…it’s only $xxx
Diet choices – It can’t hurt…try it…it’s only $xxx – we often get sucked into very expensive & invasive diets we can’t possibly afford or sustain
The Courage to Continue…role models!
Living with Parkinson’s requires courage. It is not for the faint-hearted. It is tough. A marathon, not a sprint. People with PD have the Courage to Continue
Parkinson’s could almost triple by 2050 – The Lancet
My analysis of a Lancet study in 2024 shows a possible remarkable 189% growth in PD versus 0% in all diseases. Parkinson’s could almost triple by 2050.
‘Why Worry’ – of course I do – the impact of stress on PD
Stress & Anxiety have a simply huge impact on Parkinson’s. As the Guru says below – ‘Why Worry’
Collateral damage of PD on relationships
Collateral damage of PD on relationships – how can we deal with this huge problem
I built a Parkinson’s Board Game last night!
Designing a Board Game at 12am why not!
Fight – Do I need a new URL?
Fight – it is the name of my URL and my DNA – is it the right word to use? Some disagree for good reasons
Victory in the fight – it is not a % of my old goals
I constantly talk about ‘fight’…so what am I aiming for? What is my goal? What is good? What is victory?
Parkinson’s: A Parasite, Not a Vulture
A Parasite, Not a Vulture – It’s not the many symptoms – it’s the way it feeds off stress, mental anguish, lack of sleep and magnifies…how do we fight it?
Why can’t I finish this sentence?
Why can’t I finish this sentence? Losing the ability to write if often the first sign of PD. It is so strange and for me ironic as you can read…
People, Not Patients!
People, Not Patients – it has taken me 5 years to realize this – Crazy
Parkinson’s – positives from my journey
Positives – Without PD would I ever have run 10k, done yoga or written a blog post like this – NEVER. Just a shame I had to get PD to do those things.
Am I imagining it? Seriously?
Am I imagining it? Seriously? so many strange symptoms sometimes it feels simply not real
Hope for the best, plan for the worst – The tough stuff
Hope for the best, plan for the worst? I need to take action here as much as I don’t want to
Welcome Back to Choking – The biggest killer??
Welcome Back to Choking – The biggest killer??
Faith, Meaning and Parkinson’s
Faith, Meaning and Parkinson’s- how meaning is key to the defense against PD’s advancing power.
What causes Parkinson’s and does it matter?
What causes Parkinson’s and does it matter?
Pumped literally and figuratively
Pumped literally and figuratively – I am truly touched and quite literally Pumped – Reflecting on my obsessive writing I have decided to keep at it….be careful what you wish for
YES to Hope…
Prior to PD I don’t think I considered the topics of hope or optimism seriously. Now it is on my mind and I say YES to Hope, less so to optimism. Read why….
To Michael J Fox – Thank you
Michael J Fox has won the Presidential Medal of Honor and this is my chance to say thanks! He is a role model who has transformed my life and those of millions.
Loss of Smell-like the Wi-Fi is broken on a sinking ship :-)
Loss of Smell…like the Wi-Fi is broken on a sinking ship 🙂
It is not the most important sense but like life without WiFi is more than annoying
What actually is Parkinson’s Disease?
I have written a PD blog for a while and I very often get asked the obvious question – What is Parkinson’s Disease…It is important people understand it and are not lost in a world of confusion. A few people have asked me this basic question in recent days, and others have admitted they have […]
Delivering the PD Diagnosis – 76% received no training
Delivering the PD Diagnosis: 76% Received No Training on How to Tell People I have just finished reading a new study from France (University of Toulouse) published in July 2024, detailing the perspectives of patients, primary carers, and health care professionals on the “Parkinson’s Disease Diagnosis Impact,” i.e., delivering the news. I was not surprised […]
Chill… Take a Deep Breath… You’re Not Doing Too Badly
Chill… Take a Deep Breath… You’re Not Doing Too Badly (but see postscript for afterthought:-)) If someone else suggested these words to me, I know immediately what my reaction would be… it would be hostile, defensive, and dismissive. I would get embarrassed, look away shyly, get snarly, and self-flagellate myself. It is up there with […]
The huge financial burden – elephant in the room
This is possibly the least discussed topic of all and for many of us, it is an absolute elephant looming large. Of all the articles I read, this is the one that is possibly the least covered. I must state that personally, I am thankfully blessed. I have worked incredibly hard my whole career […]
Choices are limited but yet endless and bewildering
It is strange that I now notice the more I write, the more I think about the huge array of issues those involved in the world of Parkinson’s have to deal with. One of them is perhaps one of the most interesting and challenging ironies – at least I think so – the array of […]
Time – as someone with Young Onset Parkinson’s
Being 49 years old, and diagnosed with Parkinson’s at 45, my kids find it amusing that I am referred to as having ‘Young Onset’ PD. In most things, they think I am so far from being young (choice of fashion, taste in music, attitudes, nature of my humour…the list is long). So it turns […]
What actually is having a freezing/balance episode like??
Apparently I have a tendency to repeat as a mantra over and over again the phrase “I am ok”. It finally only sunk in that it was not the case when my daughter told me in stern language – “Daddy – you are NOT ok.” As usual, she was right. I have come to learn […]
To be open about having Parkinson’s…
The last day has been a tough one physically and mentally, as PD has again decided to remind me of its presence in a very public and brutal way. But, as I am feeling pretty good again this morning and am heading soon for the airport, I prefer to skip this for a day or […]
Being a close friend to someone with Parkinson’s
Much is written about being a Parkinson’s patient and about being a caregiver or partner of a PD patient, but there is less written about how to be a close friend to someone with PD—at least from what I have seen. Yet this ‘unofficial’ role is so important and can have a huge positive impact […]
The fight with PD – head on or guerrilla tactics
A couple of years ago, a therapist said something which profoundly impacted me. It hit me like a truck, initially making me to be honest very angry. Over time, it has really settled, and I have become inspired by it. I am not sure whether you will react the way I did or as I […]
An evening without Parkinson’s
It is the holiday season for so many. I am lucky that the 24th December is the birthday of my now 22 year old twin son and daughter and the 4th January that of my soon to be 15 year old daughter. I was reflecting on the dinner the 5 of us had last night […]
Addictions and Obsessive behavior – my thoughts
Writing has become obsessive for me…truly! I realized it a while back and a lot of people have observed it. I am not a scientist and therefore offer no medical opinion but circumstantial evidence is pretty strong as the last few days has began to show. I believe it is not out of control […]
“Be positive” The most annoying words but yet the key…my perspective
I have tried to write this 15 times… it is really hard to articulate, but it is something I have an overwhelming desire to talk about. It is something I think about so much and want to get it off my chest – you can choose to read, choose to delete, choose to disagree. It […]
You Know You Have a Sleep Problem When…
When you wake up at 11pm and start writing a post about having a sleep problem, you know it’s serious. For a very long time now—pretty much since being diagnosed with Parkinson’s—I’ve had a serious sleep problem. Until recently, it was just one of many issues on my list of priorities. Thanks to the […]
12 very scary hours and then good service resumed
Everything is back on track now, and today has been good, but the 12 hours from Thursday at 11pm were far from fun. In my commitment to being open about my journey with the new treatment (Produadopa/Vyalex), I feel it’s important to share not just the polished, shiny moments but also the tough times. Despite […]
5k and Yoga by 4am – Life with the Pump
Produadopa/Vyalev Updates – 1 week This follows my posts after 1 day and after 4 days Bottom line to save time for those who are fed up reading the blog – the new pump remains truly amazing (with some issues). It is 4am and my sleep challenges remains unresolved but I have finished a 5k […]
Produodopa/Vyalev – a few days in…TRULY AMAZING (for me)
What Prompted This Blog Update My post from a few days ago sparked a number of important discussions. Since the drug is pretty new—I was told that 4,500 people are on it, and the number is rising fast, especially now that the FDA has just approved it in the US. In my hospital, I believe […]
The pump – very first impressions…(Produadopa/Vyalev)
I have decided to write this knowing that this is very very early days and that a lot can change, but so many people are curious about the journey it is important to document it. This morning I had the Produadopa (in the US it is called Vyalev) pump fixed in the hospital together with […]
Pills to pump….a big but hopefully really positive step forward
I decided to write this post after an important ‘chance’ encounter this week. Some would call it a coincidence – I would call it divinely inspired – and it is the third or fourth time something similar has happened. Additionally, I want to share a significant change in my treatment that I hope will […]
Fear – A New But Familiar Journey…time To Fight Back
The author discusses their recent struggles with Parkinson’s disease, detailing physical and emotional challenges, but also expressing determination to fight on.
5k at 3am indoors
Ran a slow, monotonous 5k indoors at 3am due to Parkinson’s Disease symptoms. Medication has positive impact but sleep troubles persist. Prefers indoor running over outdoor due to temperature. Striving to continue daily exercise.
Just half a tablet – feels great!
Half a tablet – The writer faced worsening Parkinson’s symptoms but found great relief after adjusting medication. Thankful for improvement.
PD Silver Lining – yes there is
Is there a silver lining to the diagnosis? I know this is strange to write given my recent blog post about a shorter life expectancy and my general mood at the moment which is less than 100% but this research paper reminded me of an important fact, something I should encourage myself to listen to […]
Back to running & learning to cope with acute stress
As I describe in another blogsite the last few months have been sheer terror especially as a parent whose son is at war. Today was a major milestone in my fightback as I ran my first 5k for 3 months! Stress has had a significant impact on my physical health mainly manifesting itself through a […]
December 23 update – the impact of war and my blog from before the war I didn’t publish
When I last posted a blog article on my Parkinson’s (in June) I had no idea what was the come in the coming months. On the 3rd October I drafted an updated blog – which I thought at the time was interesting – but didn’t hit send. Then the 7th October came and with it war […]
Update June ’23: staying positive is hard work and takes effort but is worth it
Before I start in earnest the one overwhelming lesson I have learned this period is that being a fool and ignoring all advice from the professionals is a terrible idea…but I will come back to this…. When I came to write this update two fundamental questions crossed my mind…1) Why and 2) What tone to […]
March 2023 – PD…short update…choking, 40 becomes 20 and I really am British
I have started to feel that this blog is a little self-absorbing/self-indulgent and I have debated whether to keep it going, especially with all the other things going on in the country and the world which are all more fundamental. However, based on feedback from others, and the help this has been to me to […]
Parkinson’s – all good but a scare – it really could have been a lot worse…but it isn’t thankfully (TG)
Since I last wrote nearly 6 months ago, things have been good, great in fact, except for a couple of very terror filled weeks which thankfully ended with good news. As always, this is as much for my benefit – as a record of the journey – and therefore I have been and will continue […]
August 2022 Update – “keep up the good work”, a few bumps and a word on insurance (as boring as it is)
First, let’s start with the big picture – I remain positive…almost all the time! I met two days ago with my neurologist and we discussed where my Parkinson’s is at. In line with how I feel generally, we are doing well, despite some concerns (see below). The medical reflection of that is the scoring on […]
Year 2 into 3…PD has not been the key thing :-)
It has been many months since I last posted so I thought I would drop a short update, especially as a few people have asked. I will probably regret this because when I say that things are going well, the next day I feel the opposite. So I guess tomorrow won’t be a great day […]
Med switch and my muscles…a learning for me
Wanted to reflect on the last week….not the best but showed me the importance of being on stable meds. From discussion with my doctor (who I respect hugely and who I trust completely) we began the introduction of Levadopa (Stalevo 75 * 3) and the slow withdrawal of Dekinet (I am staying on Sifrol, Azilect […]
Sleep CBT…an open mind…seems to be working
For the last few months, my sleep has been a complete mess…..waking up almost every night between 2:30-4:30 no matter when I went to sleep. I tried melatonin and harder sleeping pills but didn’t seem to work. I changed my pillow, stopped looking at my phone and all the basics (no caffeine before bed etc)…I […]
Year 2 – Remain clumsy, some new meds but so far so good
I was not going to write for a while but a number of people have said that my previous post helped them/was interesting so I have decided to keep it up. It is good for me as well – it helps me think and get perspective. Those who don’t want to read….feel free to delete/ignore. […]
Year 1 of PD – Glass Half Full
I decided to keep a journal of my journey – it has been quite a year but I have learned a lot. some of which maybe relevant for new and older PD people. I am not a doctor and this is not a medical opinion but there is lots available to make a stand against […]