How I was robbed of my old life but g... - Parkinson's Movement

Parkinson's Movement

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How I was robbed of my old life but given a new one

Michel0220
Michel0220

2020 had started well. I was six months into a new CEO position that I really enjoyed, had just gotten back from an amazing holiday, and was about to buy a new house. I had no idea that this was all going to change a few weeks later, and that I would have to stop working and reinvent my life entirely.

I want to update my colleagues and friends who have seen me disappear from the markets a few months ago (you might call this my 'coming out'). I also want to share the story of my journey that I have just started but that has already transformed my life. Lastly, I want to share my experience in the hope that it may be of use to others.

How it all began

I had joined one of the world's largest financial brokers, six months after leaving my previous long-term employment. This was the perfect job for me; I was doing well, and I was named EMEA CEO of this great company just 18 months after joining it. The job gave me the opportunity to work with amazing people, in a culture that fitted my personality, as well as pursue great transformational challenges.

For a while though, I had had some difficulties typing and writing, and I had promised my girlfriend that I would seek medical advice. After consulting with a GP, I was referred to a neurologist who made me take some basic tests of mobility and agility and asked me if I had any idea about what had affected me. Naively, I suggested arthritis. He told me that what I had was not arthritis but Parkinson's disease, an incurable, degenerative disorder.

Walking back from the clinic to the office that day felt the same as walking home on 9/11; I felt like everything around me was moving in slow motion, and my mind was overflowing with the clear understanding that my world would never be the same again, yet not knowing to what extent and how it would change.

As the news sank in, the whole picture emerged as I began to recollect other signs I had so far failed to piece together - my progressive slowness in walking, the increasing number of times I lost my balance, and the difficulty I was having in swallowing and projecting my voice in meetings.

There was also the fact that my father had had Parkinson's and that, although the causes of Parkinson's are unknown, they are thought to be linked to genetics and/or pollution.

In other words, it all started to make sense and there was no room for denial.

What now?

Acceptance was an important first step, but the key question was: what was I going to do about it?

Over the next few months following the diagnosis, I decided that I would:

- Take responsibility for my own health: it is my body and I only have one.

- Seek medical advice from the best specialists: this illness has been around forever and, even if there is no cure, it is well researched.

- Learn from some of the many people (10 million in the world) who have Parkinson's and, in particular, from those who have managed to bring their symptoms under control.

- Take a holistic approach (there is no silver bullet for this) and be open-minded toward non-traditional forms of healing as a critical adjuvant to classical pharmaceutical solutions.

- Leverage my professional skills in the process, in particular my resilience and discipline, but also making sure that I stay away from my natural tendency to overachieve and accept that doing my best is good enough.

- Try not to become too self-centred: Parkinson's is part of my life but I can't allow it to become my life.

In practice, this unfortunately meant that I couldn’t continue with the senior role that I liked so much. Having previously thrived in high-pressure jobs, the medical advice was unfortunately very clear that any stressor would affect my motor symptoms.

I also had to make some difficult choices, such as stopping all alcohol intake (Friday nights are the toughest) or going gluten-free, as well as starting to engage in activities I had never really contemplated before, such as doing pilates and yoga or starting to practise meditation.

I practically ended up designing a holistic programme aimed at bringing together what traditional medicine has to offer in terms of pharmaceutical solutions, along with exercise, diet, and meditation.

- Exercise: for people with Parkinson’s disease, exercise is not only healthy, it is a vital component to maintaining balance, mobility, and daily living activities, along with a potential neuroprotective effect. My daily routine nowadays includes one hour of fitness (weights, pilates, even trampoline), one hour of walking (Wimbledon Commons has no more secrets for me…. I just need a dog), and an hour of Yin yoga, a slow-paced style of yoga, and Qigong, a set of exercises for health and wellbeing.

- Diet: the gut-brain connection is one of the new frontiers in Parkinson's research, and there is growing evidence that, at least in some patients, the disease may begin in the gut. I have become extremely focused on what I put in my body (and don't) and have performed detailed biological tests that, with the help of some of the UK’s most experienced nutritionists, have led me to follow a very personalised diet and set of supplements.

- Meditation: western medicine tends to separate body and mind, while other cultures see both as one complex energy and information system and rely more on healing approaches that include emotional and spiritual elements. This, I think, is critical to my success in managing my symptoms and slowing down their progression. From never having done any meditation before, I progressively came to meditate close to one hour a day with a mix of autogenic psychotherapy (a technique that teaches your body to respond to your verbal commands), Indian breathing exercises, and visualisation.

How does it feel to do all this?

Above all, I am very fortunate to be supported by a very strong and diverse team of specialists, including an extremely helpful GP, a neurologist who happens to be one of the NHS’ best Parkinson’s consultants, two very experienced nutritionists, a psychotherapist, a qigong master, and a meditation coach. I am also forever thankful to my girlfriend for giving me so much strength and without whom this journey would be impossible.

As far as my programme is concerned, it is still early days and I feel that changing my health is like turning around an aircraft carrier that has been following the same adrenaline-fuelled trajectory for more than 50 years and needs to pick up a new one.

For instance, dietary changes take at least six months and often longer to show their impact. Losing weight was the easy bit in my case (I was not aiming for that but it happened), but increasing cellular energy and reducing cellular inflammation takes more time.

It is, however, fair to say that Parkinson's aside (how I wish), my body and my mind have probably not been that healthy in a long time. Also, anxiety about one's deteriorating condition is a major issue for Parkinson's patients and I find that meditation and focusing on positive thoughts have been a major help.

In a sense, it feels like Parkinson’s has given me a new life as much as it has robbed me of the old one.

Sharing positive experiences

The illness definitely impressed on me the need to listen to our bodies more (medical research estimates that as much as 90 percent of illness and disease is stress-related). Ideally, we want to catch those messages early and pay attention to them before they turn into something serious. Unfortunately, most of us will keep going until we can’t anymore. For me, the message was Parkinson’s disease. For others, it will take other forms such as depression, addiction, cancer or other illnesses.

What is next? I spent the last few months focused on maintaining my health and learning how to adjust to my new life. During that time, I have met some amazing, positive-minded, Parkinson's patients who are focused on getting better and sharing experiences. This includes a former martial arts fighter and a molecular biologist.

Those interactions have been of great help and I would like to explore how to expand this experience to a bigger circle of people, to allow them to share positive experiences, and learn from each other. Which shape and form this will take remains to be determined, but I will definitely keep you in the loop.

57 Replies
oldestnewest

Great post... Thank you

I know what your first 8 years may look like. I was dx 2012. See my profile.

Thanks and appreciate your sharing. Love the positivity. Only way to go.

Michel0220
Michel0220 in reply to ParlePark

Thank you :)

Sounds like you've done your PD homework Michel and are on the right track. Welcome to the forum and hope to hear more about your new journey.

Michel0220
Michel0220 in reply to faridaro

Thank you very much!

A good outline of your First ? year with PD. thanks for sharing.

From my experience Dx 2013, I would , while you still can , concentrate on exercise, especially speed related workouts and walking an energetic dog... got to go wife and god are wanting a walk.

OOPS there is a misprint, that should read Dog, not god, though I think he believes he is the big guy...

😂 noted!

Welcome Michel0220!

It's clear that you've done your homework and making the best of your situation.

I see you doing virtually everything right but missing one important therapy to try - High dose B1 supplement. I believe you're a good candidate to benefit from it, especially given your past drinking history and professional background.

Please visit the below posts for the relevant info -

healthunlocked.com/parkinso...

healthunlocked.com/parkinso...?

For more scientific detail on why B1 may help, you may be interested in the below book -

amazon.com/Thiamine-Deficie...

Book preview link -

read.amazon.com/kp/embed?li...

Last but not least, it seems you're a great candidate to share your supplement regimen with the PD community here with all your expert resources. Would you please consider updating your profile with your activities and the list of the supplements that your find helpful? For an example, the below profile by MBAnderson is valuable for anyone new to this site.

healthunlocked.com/user/MBA...

ChrisWF
ChrisWF in reply to rescuema

Given that you are effectively willing to prescribe things to people on here, would you mind sharing your relevant qualifications?

Because this poster has what sounds like a team of advisors, and perhaps it would help him to know.

rescuema
rescuema in reply to ChrisWF

Lol I don't "prescribe" anything. I offer suggestions with scientific reasons why and it's up to people to decide. Try being more positive - it just may help you. ; )

Michel0220
Michel0220 in reply to rescuema

Thank you very much for your message.

I am aware of the B1 angle but haven’t tried it yet in high doses (it is however part of my supplements).

My plan is to run new biological tests in January and see how my body has evolved and then potentially look to increase B1 at that stage.

I will complete my profile as you suggest (I’m still new here).

Wishing you well

Thanks for the compliment! haha

Thanks for sharing your valuable experience and learnings. The tips we get from fellow PWP are worthier than those of doctors. The reason is that patients have 1st hand experience of the disease and can describe it in a better way.

Just wanted to know whether you are continuing with your job and if yes, how you are managing it. Secondly what's is your age. Would be grateful if you can share the list of supplements you are taking right now

Hi

Thank you very much for the message

I am 55 and I’m lucky that I was able to stop working which gives me full-time to take care of my health.

Wishing you all the best

Thank you! What an outstanding essay about your life, and experience with being diagnosed with Parkinson’s! This is most encouraging to me, and I appreciate your efforts. I was not ever a CEO of a company, but was a manager, and started having typing and writing troubles, like you, which progressed to becoming slower in movements, with swallowing, speaking, balance issues, etc. before I was diagnosed. I had no idea that I had Parkinson’s, for about 8 years, before I was diagnosed! I had heard about neurodegenerative diseases, such as ALS, and Alzheimer’s, but knew practically nothing about Parkinson’s! So, it came as a shock! I retired from my job, and agree with you, that exercise is an important key to maintaining mobility! Again, thank you for sharing, and inspiring me to continue on my path, of living with Parkinson’s in a productive manner!

Michel0220
Michel0220 in reply to ddmagee1

Thank you very much for your nice message.

I hope you are well and wish you all the best.

Michel

Michel0220
Michel0220 in reply to ddmagee1

As far as the supplements are concerned, those are very personalised based on biological tests.

I was lucky to be able to work with Jeffrey and Lucille Reader in the UK. They might be able to point you to someone who can help in your part of the world

Thank you for your story. You are doing so much to help yourself, that is great! Please could i ask who your consultant is?

Many thanks

Michel0220
Michel0220 in reply to Binday

My consultant in the UK is Prof Bhatia at UCLH. Just be aware that all what I do in terms of exercise, diet and meditation is independent from his own advice. He is of course very supportive.

Lovely to hear a positive post , my husband was diagnosed 14 years ago and is one of the most positive people I know . I’m really interested in the diet side of your regime if you wouldn’t mind sharing ? 😀

Michel0220
Michel0220 in reply to ruff1

Hi

Thank you very much for your message.

My dietician works with Geoffrey and Lucille Reader in the UK. They have published several books so you can find more about them on the web. I am alcohol free, dairy free, gluten-free. There is more to say about this of course ; maybe you can buy one of their books.

Wishing you well

People here will take great interest in your diet and supplement regimen. Go on, live a little and share!

Michel0220
Michel0220 in reply to ChrisWF

Hi Chris

The supplements are really based on my individual biological situation so, as much as I would like to share, I don’t think its advisable for people to follow exactly what I do.

I would however say that some of the supplements aim to reduce cell inflammation and include specific types of omega-3 as well as curcumin.

My advice is to find a solid dietician specialised in Parkinson’s and to get a full biological evaluation done.

It doesn’t prevent you from exploring some other supplements thenafter (eg mannitol, probiotics).

Thank you very much for sharing your journey with PD. It sounds like you are exploring every avenue to help yourself and I wish you well.

I joined this forum a few years ago as my husband was dx at 65 and like you was keen to try everything that might help. I have gained so much information from the caring and knowledgeable people here who are willing to offer their experience and advice.

My husband is under Prof Paul Jarman at UCLH and feel supported by him.

We re keen to find out about more nutritional help and will explore the people you have mentioned above.

I just had a aha moment right now with this illness. I was reading two nights ago how Rifaximin has been approved for liver disease. I thought that odd, so I read in detail. So when either SIBO or the Colon is packed with bad bacteria the liver gets overloaded with toxicity. When liver patients take Rifaximin, it is a wonder drug for their liver. When I first got sick I noticed that progressively I went from being able to drink large amounts of alcohol to none at all within 4 years. wtf, wtf. For the last three days I been painting Maya's room to try to keep myself from falling into a depression I can't climb out of. I'm not so much goal oriented in the endeavor so much as whatever I can do is less than needs to be done type of thing, but I have been sweating tons of sweat and drinking tons of water. It was odd cause one day I couldn't get the dehydrated sensation out of my mouth no matter how much I drank, it was odd. I also been doing wheatgrass every day for a couple weeks because it binds and cleanses the liver. Today I have had this metallic taste in my mouth that doesnt go away not from brushing, gargling, nothing. I was afraid to google it because scared to hear bad news etc. Turns out metallic taste in the mouth is liver toxicity. I spoke to Dr. Algohari today at the VA he's a good Dr. he's putting in the order for Rifaximin to see if it gets approved. I told him to tell the VA to issue it non formulary without the politics or promises and see if they are ok with it. So here's the thing, if the liver is toxic there are things that can be done to mitigate that. A cleanse, a fast, remove all forms of high fructose etc. Did you know that the liver cleans itself around 2 am to 3 am ish? If the liver is toxic it will wake you up as a fail safe so you dont die or pass out in your sleep. I have had times where I have woken up from the dead of sleep as if someone put coffee in an IV. Testosterone is made in the liver and mine was very low. Vitamins A and B vitamins are stored in the liver. I noticed and thought I was imagining it night blindess when I got sick. The dark seemed darker while driving and that caused the anxiety to drive nights and have to take bridges at night. Basically eat less, more healthy, sweat and juice it and fast should reverse a fatty liver.

First of all I suspect writers who have no experience with depression. The understanding factor may be high but no one knows what depression is like without experience. Certainly not a machine that gathers facts. Not situational depression but lifetime inherited depression. That being said, I disagree with what was written. I’m sixty five and have suffered my entire life. I take meds and have been to counseling so I’m doing as much as I can to help myself but I still get whacked with depressive episodes. I have always written about myself in the third person as do some of the people I have worked with in the mental health field. Why? I’m not sure but perhaps to not “own” the disease. Many depressed people don’t focus on themselves but get their self worth from doing things to make others happy and our world is not as black and white as some may believe. If it were depression would be easier to understand, in my opinion.

Who is your neurologist

GOOD ANDinterestong story

please keep me updated on your travel in pd

Thank you so much for these words of wisdom. As a newbie with Parkinson's (diagnosed in March), I am still learning. I joined a local support group, received info from Parkinson's Canada, and asked to be referred to a MDS, as my neurologist did not specialize in the this disease. So I now know the importance of exercise, surround myself with positive people, take charge of my body & question any medications prescribed (I have only just started taking low dose Selegiline). Parkinson's is not the boss. I am.

Michel0220
Michel0220 in reply to Limpy932

That’s the right attitude, well done and all the best.

Excellent post, Michel. Would you please share your dietary choices? Food selection, meal plan, etc. Thank you.

Michel0220
Michel0220 in reply to bstover

Thank you for the message.

Basics are no alcohol, no dairy products, no sugar, no red meat, no gluten.

Lots of fruit and vegetables, chicken, oily fish.

Please google Geoffrey and Lucille Reader and you will find some of their publications with more details.

ion_ion
ion_ion in reply to Michel0220

no sugar but lots of fruits; most of the fruits contain a lot of of sugar, for example the grapes, bananas, apples etc.

Thanks so much for your positive post. My journey sounds very similar, however I was a Secondary Teacher. I was diagnosed in 2015. I mix naturopathic ideas with prescriptions. Exercise for me is essential. I am presently trying Dr Terry Wahl’s diet. I am 2 weeks in and going to give it the 200 day college try! I will let everyone on the forum know my results once I feel clear on how my body responds. Good luck with your journey. This forum is very interesting. There seems to be a concentration of really smart people and sometimes interesting debates. Cheers!

Thank you very much for the nice message. Looking forward to hearing how your new diet is going. Wishing you all the best.

I am on the Wahls Protocol for six months now, level three, ketogenic. I am sold on it.

Hi, so glad to hear you are also trying the Wahl’s diet. I am loving it so far and I have noticed a difference in several symptoms. How about you? Have you had symptom relief? Just for some background, I am 61 and I was diagnosed 6 years ago.

I am 69 and was diagnosed in August. I made the appointment with a neurologist back in March when I suspected PD. Waiting all those months, I immediately started on the Wahls Protocol, I've lost 30 pounds, and for the first time in my life I have beautiful fingernails. I can only attribute that to the diet. I also intermittent fast. All that, along with very intentional exercise every day and finding time to meditate (calm my brain), I am almost symptom free, definitely better than I was back in March. My balance is still a bit wonky, and I still can drag my foot at the end of a really busy day, but I am REALLY happy with my results so far. You are farther along in PD than me, and I'm not on meds yet. What symptoms have improved with you?

I started with neuropathy, numbness and tingling, in my right side. These symptoms have much improved. I have a pretty good tremor when my l/d wears off. I have also lost 6 lbs and going for 4 more. I feel real good as far as my energy goes as well. I am carrying on and am excited about how it is going so far. Cheers and best of luck!

rebtar
rebtar in reply to GrandmaBug

Could you share in another post your experience with the Wahl's diet? Which level are you doing?

GrandmaBug
GrandmaBug in reply to rebtar

I am on level three, ketogenic, and I also intermittent fast, eating only between noon and six PM. My energy level is back to normal, the numbness I experienced in my right thigh is gone. My arm/shoulder pain is gone. I'm standing up straight...so many things. I attribute these changes to not only better health through the diet, but also to my exercise program. Like Michel above, I also meditate and concentrate on joy and gratitude. I'd be happy to talk to you, if you would like. I am in the US.

rebtar
rebtar in reply to GrandmaBug

I’ll message you.

Thanks for this post, Michel. You are an inspiration. I've been diagnosed just over a year at 57 and also had to give up a job I loved. I am grateful that I am able to make "PD Warrior" my new full-time job. Your "turning around an aircraft carrier that has been following the same adrenaline-fuelled trajectory" analogy is perfect. Keep up the good work and thanks for sharing.

P.S. I agree with you that supplements should be based on bloodwork and are individual to each person. I started off running to Amazon for every new supplement I read about. Turns out I was throwing away a lot of money on things my blood did not need.

Michel0220
Michel0220 in reply to lbrussell

Thank you very much for the nice message.

I wish you all the best.

Hi Michel

Welcome to the HU community and thank you for sharing your story.

3 years post diagnosis ,had at least a decade of non motor symptoms but now I feel much better than those years. As our dear friends stated ,you have done your homework perfectly.

I would take Neuroplasticity as a reality with great potentials for the PwPD.

No Gluten ,No Dairy, No Alcohol, No Sugar, Low carb diet, Less Animal proteins and avoiding acidic foods , Fast walk and Yoga been my best approach to keep the PD symptoms at bay.

I have been doing HDT protocol for the past 3 years with amazing results.

My UPDRS is 1 (ONE).

I had exertional toe dystonia for years but I have completely sorted it out and working on the rest of my body to bring more fluidity and co-ordination.

Stress is the culprit of all our symptoms since our Hyperdirect pathway (the inhibitory pathway or the handbrake) in right brain hemisphere cannot function under stress or when we are tired. Working to activate the parasympathetic nervous system is another approach to keep symptoms under control mostly with breathing exercises.

I would recommend reading this book:

audible.co.uk/pd/The-Brain-...

This is the best place to practice neuroplasticity:

dystoniarecoveryprogram.com/

Please feel free to share your thoughts and ideas.

Kia

Michel0220
Michel0220 in reply to Kia17

Dear Kia

Thank you very much for the nice message.

Thank you also for sharing this information with me, it is both encouraging and inspiring.

I am not familiar with HDT protocol but will be looking into it. I will also review your reading suggestions.

Are you based in the UK?

Thank you

Michel

Michel0220
Michel0220 in reply to Kia17

Sorry, I see that HDT is high doses of vitamin B1.

I am taking vitamin B1 as part of my supplements but not in high doses.

I have however been considering this and will research it more.

billyboy11
billyboy11 in reply to Kia17

Hi Kia, toes curling is an issue for me also and recently disgnosed with Distonia. Rivotril prescribed taken at night works for the night movements.

How did you deal with the toes issue?

Thanks for the consistently appreciated posts.

Bill

Kia17
Kia17 in reply to billyboy11

Hi Bill, I can imagine how hard would be dealing with the toe dystonia. I had it for 5 years. I am constantly practicing Dystonia Recovery Program designed by Dr Farias and seriously careful about the food that I consume.

They have been contributing factors in eliminating of my exertional toe dystonia.

Please let me know if you have any questions.

Kia

You’re very welcome Michel. Speaking of Wimbledon Commons ,I guess I live very close to you.

Please feel free to send me private message should you have any questions.

Kia

Please do your research on HDT. I visited late Dr Costantini who invented the HDT 3 times in Italy within just a few months. He was very sure about the outcome.

Right on! Your story mirrors mine, except I was already retired. Very quickly I developed a diet, exercise , and mind-body program for myself. I have enrolled in four PD research studies. Might as well be of help to others. I can truly say it has been an interesting and enjoyable ride, so far. I've made friends all over the world through Facebook forums. I'm new to this site, but enjoy so many of the posts. Welcome!

Thank you very much for the nice message. Your positive attitude is an inspiration to all.

Wishing you all the best

Michel

Thank you for you honest and uplifting post. My husband was diagnosed with PD and still has not "owned" the diagnosis because of severe lumbar spine issues. Finally got the surgery so he can begin the number one protocol - exercise. We have had to change our lives drastically but I am glad we have the answer to all the non-motor symptoms. This PD site has more positive leaning posts than other PD platforms. Best to you in 2021.

Michel0220
Michel0220 in reply to Sydney75

Thank you very much for your message. Exercise is indeed critical to managing the symptoms. I think having a daily routine is very important and sticking with will make him a fitter and healthier person overall. One hour walking every day would also be beneficial.

Hi, Michel. I was wondering about your story and something about it bothered me. Flat out, you are a liar, a phony and a troll.

Having got that off my chest, on the surface, your story seems harmless, motivating and fascinating. But upon closer look, I was shocked by the cult like fawning by some of the very well known members of this forum. Even, Chris WF, someone who has his knives out for charlatans and trolls was reduced to a mock version of himself in a way that is pathetic and pitiable.

Parkinson's patients are generally a hopeful, eager and unfortunately desperately waiting forever for some kind of hope filled cure. It doesn't matter if it's offered for free or for a large amount of money. It's always lapped up. By design or by some perverted sense of twisted pleasure by torturing seemingly helpless Parkinson's patients, you gain something that is hard to figure out for many people. Why would he do this they may ask. What does he have to gain? How can he or she (BTW I know that you are a "He" despite your commendable attempt to be gender neutral in your writing) gain by this?

I know the answer to all of that and more. I also figured out your fake identify because you made a major mistake in your post and inadvertently gave yourself away. I think that based on my analysis, your intentions are harmless although the motivations are

cheap because you decided to use a helpless, hopeful group of people in misery for purposes of shall we say "research". I believe I know what it is.

I am not used to this, but I must respectfully ask you to apologize and leave the forum and leave us alone. I am also appalled by the ferocity of comments deletions by the moderators who seem to be working overtime on this particular post while leaving every other offending post alone. It's as if the moderators also drank the koolaid.

I am going to assume that the other deleted posts are from the smarter members of this forum who figured it out like I did. I would have normally looked the other way, but the way a couple of genuine members of this forum latched on to your post really got on my nerves.

Please apologize and leave. You really don't want me coming after you. Sharoncrayn and then you? Enough is enough.

Again, you think that you are anonymous. But you are not. For a IT guy like me, you are easy prey. Help me help you. Do not provoke me to the point that I have to take a "walk" into your life and make it miserable. I don't want you to wish that you were better off having Parkinson's. ...

...

For the moderators - please contact me before deleting this post. We need to talk about your lack of site security.

For my fellow Parkinson's sufferers, Parkies if you will , please don't be afraid of me. I will always have your back as you will have mine as long as I get that you are genuine. I have not checked any of you out and I won't. But, believe me, it's easy. These idiots ( I am sure the British can catch a joke) have not put their brightest thoughts together if their intentions were to really keep us all anonymous and safe.

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