I have updated this presentation that I last posted here two years ago.
It has been 5 years since I have been diagnosed and I have had symptoms for 7 years.
The presentation describes what I do to manage my symptoms and hopefully slow down progression. For me, this has become a full-time job and has helped me control anxiety, increase my energy levels, reduce "brain fog", improve my balance, regain my sense of smell, improve my voice and ability to write.
Some of the things that I do might not be suitable for everyone... And some things that I don't do, might be suitable to others (e.g. dancing, singing, art in general, ...).
I am also aware that many PwPs will have time constraints and physical capability limitations, and I am sharing my program in the hope that, if not all, some parts can help inspire my fellow PwPs.
Thank you, Michel0220. I'm the group leader of a monthly in person PD meeting - October is the 1 year anniversary. Yay! Based on the Parkinson's Journey - creating a road map, a path with routines, tips and tricks.
Learned a few things from your presentation with some different apps (I'm always looking for new apps to present to the group). I'll incorporate my new learnings into the mix.
Do you use the TENS machine on your hands for rigidity and dexterity? My hubby's hand dexterity is quite poor.
You can download the app from the App Store or the Google store (it is free). The app offers many functionalities including helping you stick to a routine, maintain a journal and socialise with other members and it has a research section called “Keep learning” that allows you to track all new research concerning PD on a daily basis.
Someone else on this forum recommended lectin-free a while ago but I have not yet looked into this. What do you think are the potential benefits?
As far as gluten is concerned, I don’t think there is any research saying that is bad for people with Parkinson’s but I elected to do this based on recommendations from my dietician. Our November speaker will be Laurie Mischley and I think gluten will come up in her next talk.
It is always hard to assess the benefits of a routine as I simply don’t know how I would be without it. However, I think I’m not doing too bad seven years into this journey and I intend to continue with patience and determination 😀. Finally, I think we would all agree that exercise, nutrition and meditation (the basic elements of my routine ) are essential activities in the management of our symptoms.
We will be circulating invitations for the L Mischley webinar in a few weeks and anyone who registers (or has registered to any of our previous events) will receive a message when the recording is available. It will be posted on our website:
LECTINS: Please wach this video - Dr. Paul Mason - 'How lectins impact your health - from obesity to autoimmune disease' youtu.be/mjQZCCiV6iA?si=rwq...
Dr. Mason shows how Lectins escape your gut and can travel to your brain. I stay away from Lectins.
GLUTEN: So... if you believe, as I do, that, for some people at least, PD is an autoimmune disease, well... people with autoimmune diseases should avoid gluten as it causes inflammation. At least I think so. My doctor does too.
There is a chance that PwP have a non-Celiac gluten intolerance. Please see my post: Gastrointestinal dysfunction in Parkinson’s Disease: absence of anti-gliadin antibodies healthunlocked.com/cure-par...
A great post, many thanks for sharing how you manage your symptoms. Taking control over what you do is immensely important with managing PD. It helps others to see that symptom management can be helped by what works for the individual.
My husband says his hands are not as coordinated to perform simple tasks like undoing and doing up buttons, but he can manipulate pens and draws a lot during the day, this has never changed.
Thank you Zella. As far as your husband’s hands are concerned, he might find that the following video with hands/fingers exercises is of interest. I have been doing this for years and it has helped me regain some of my lost hands mobility.
Thank you for this post. What would your suggestion be for someone’s schedule who is not retired and has to work. Work creates tremendous stress on me, but I have no choice. Any advice would be helpful. Thank you
I realise that what I am going to say is easier said than done…
Stress makes our symptoms worse so you might have to face some critical decisions when it comes to your current work. Can it be accommodated to reduce stress (eg reducing your responsibilities), can you find ways to better cope with the stress associated to your current work (eg meditation and relaxation techniques). If not, can you explore other less stressful work opportunities?
I personally cut short a successful career in financial services because the stress was just extreme.
Aside from that I would concentrate on exercise (3x30 min per week should fit in a busy schedule), nutrition (I could not do this without my wife) and meditation (Headspace app for instance).
Managing symptoms and trying to slow down progression requires some difficult decisions and, in my case, a total change of lifestyle.
Indeed, it's easier said than done to completely change your lifestyle, but I believe that when dealing with Parkinson's Disease, you really have no other choice if you want to tackle your symptoms seriously. While suppressing them with medication like C/L can be a relief, it merely masks the underlying issues. It's undoubtedly painful to bid farewell to a way of life you've built over many years. However, I also see this as a wonderful enrichment of my life, and it has worked wonders for me. Living consciously and stress-free in the present moment has become essential. Strangely enough, I wouldn't want to miss it for anything. 🍀
Thank you for the response. I am 53 probably had PD since age 40. I am all alone so it can be difficult at times. I am also in financial service industry but I can’t retire without working for like 8 more years. I workout 5 days a week plus do HIIT cardio 4 days a week. Stress does kill me. I don’t know what else to do. I wish I could retire.
I had a very high stress job and incorporated mindfulness meditation into my routine many years ago. You can do 10 minutes or two hours. I do about an hour day but didn’t start there. It definitely helps. Best of luck!
Absolutely. The beauty of Meditation is that it does not require any specific equipment and you can do it anywhere, anytime. Aside from the general benefits of managing stress, it also helps me manage internal tremors that affect me in particular during the night.
Thank you so much for this. I am happy for you that you are doing well overall. That's great news - we all appreciate everything you do!
I just visited my movement disorder specialist this week and she said I have extremely slow progression. This is fantastic news for me given that I am only 56 years old! I haven't really progressed much at all in the 2 years since my diagnosis. I had symptoms for 2 years before diagnosis. I am also doing many of the things you do although I work full time so I can't fit all of it in.
I have one question - how do you think you regained your sense of smell? I would love to get it back
Hi Stacey. Thank you very much for your message. I am not sure what helped me regain my sense of smell but I have been taking mannitol for 4 years and it may have played a part. Mannitol was a relatively hot topic until a phase 1 trial (I think) cast serious doubts on its efficacy but it might help some people…
Sorry, I wished I could provide a stronger answer 😀
Thank you for that information. I truly appreciate you taking the time to respond. I am using a helmet but sadly have not gotten my sense of smell back.
Thank you so much for sharing Michel! I started doing Les Mills Body Combat after reading your first presentation around 2 years ago, and has been very beneficial along with strength training. As I travel a lot for work, both can be done wherever I'm at!
That’s great news, thank you very much! Virtual reality is a nice way to bring some variety to our daily exercise sessions and Les Mills Body Combat can be quite demanding!
Thanks for sharing Michel. Was needing that. 3 and a half years post-diagnosis, and feel the honeymoon may be coming to an end. I've got a decent regime which I think has worked well so far, but always looking to improve it. Boxing, Circuits (HIIT), Running, Yoga, Meditation, Dairy free, low meat, supplements. Could definitely do better on sugar, carbs, gluten and still enjoy the odd wine/beer (though I now look tipsy before I start🤣). Stress always the elephant in the room - work is tough sometimes and helping out with ageing/very ill parents - meditation is a life saver here, and your wisdom on gratitude/kindness/avoiding anger is a timely reminder. Thanks again and thanks for your very informative podcasts. Best wishes, Andy.
Thank you very much for sharing your experience Andy. You seem to have a very comprehensive routine (congratulations !) and I am particularly happy to read about your positive experience with Meditation.
I clearly remember your first post where you mentioned having PD.
You relied , at that time, on some "experts" for your protocol to treat Parkinson's.
Honestly, I thought it was a fake profile because it was a "copy and paste" from another website where you had written the same things, but I was obviously mistaken (yes... rarely, but it does happen also to me 😁).
What impresses me the most is that after all this time, you now know more about PD than all the experts back then.
If I needed advice on any aspect of this disease, I would ask you. But I don’t need to ask because you have been very generous in sharing all your knowledge with your fellow travelers, and I thank you very much for that.
I believe a person is valuable to the extent that they help others, and you certainly do that a lot for the PwPs.
This is such a nice message…. Thank you very much Gio! Parkinson’s is such an important part of our lives that I think it is important to develop a strong general understanding of our condition. Most neurologists (not all) are focused on medication only, so it is incumbent upon us to seek information on other things that we can do to manage our symptoms (exercise, nutrition, meditation, technology).
It is a pleasure for my friend Mark and I to contribute to this via the NoSilverBullet initiative, and the fact that we have had in excess of 800,000 views of our videos shows that PwPs are very eager for information!
I’ve been diagnosed 8 years and probably do half of what you do on a daily basis as well as having an afternoon nap for 40 minutes (apparently helps with brain shrinkage) .
Has anyone found a specific regime to improve smell?
Hi Coling. I have not come across anything specific for this (maybe mannitol but this is rather speculative) but I think that a holistic approach based on exercise and nutrition (sorry for the litany) is the best approach.
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