I posted a few weeks back and was fortunate enough to receive numerous informative replies with suggested alternative ways of managing PD symptoms. Having put in place an exercise regime and having commenced B1 HDT to see if I can try and positively influence my present symptoms, I have also been considering the longer term goal of ‘recovery’ and I am particularly interested in the Qigong/Meditation route.
I have been researching, reading and watching video clips relating to Qigong – Bianca Molle, Howard Shifke; Meditation - Joe Dispenza; Foot injury/dissociation/Tui Na - Janice Walton Hadlock etc.
They all make sense to me, in so much as that I easily fit the categories they highlight from being out of balance (work/life, emotional etc.) through living in the past and revisiting old hurtful events over and over again, to experiencing a foot injury and having an attitude of ‘show no pain’.
I clearly feel that I potentially have a lot to learn, but most importantly I potentially have a lot to gain from exploring these alternative therapies.
The issue for me now is that having tried to get ‘up to speed’ on these therapies I feel swamped and confused as to where to start.
Do I sign up for coaching with Howard Shifke or Bianca Molle; buy Joe Dispenza’s DVDs/CDs and try self-learnng from these; try to find someone who does Tui Na (not easy in rural England) etc. etc.
Hence I am reaching out to the HU community again, in particular to those who have maybe tried or are still using one of the above therapies, to see if anyone is willing to share advice for a ‘real beginner’ with poor breathing control and a wandering mind.
Questions like:
•How did you get started?
•What useful resources have you found?
•What did you find helpful or seems to work as a PWP? etc.
Basically any advice, guidance and feedback, good or bad, on the above would be appreciated as I look to try and move forward.
Thanks in advance to anyone who takes time to reply again.
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Salvation1
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I continue to practice faithfully since posting this three years ago. After the initial big improvement there has not been much additional change, but I am still much better than three years ago. The practice continues to be very rewarding - I abide in divine bliss for hours at a time, among other benefits.
Many thanks for taking time out to offer your insight. Yours is a fascinating story with your progress to date. I just wish that the PD world would support people like yourself to research and record that progress and give proper recognition to alternative therapies in addition to the medications.
The links in your posts to the Chi Centre and Mington Gu were particularly helpful. I plan to look through his videos and see if I can find a suitable starting point for a beginner like me.
I note that previously you were happy to accept a private message. Is that still the case?
Thanks again for sharing. You are clearly providing inspiration to those of us on a similar path.
Clean up your diet, start exercising. Try to be flexible, body and mind. Avoid too much stress but don’t stop doing things That are hard or you’ll lose the ability to do it. Try not to cogitate or repress anger.
Thanks for your advice. Diet and exercise are in hand. Avoiding stress is difficult due to job, family breakup, mother with dementia etc. However, I struggle with rumination and often often anger, sadly. I think that I have lots to work on.
I am pretty sure rumination and repressed anger is the cause of my hubby’s worsening symptoms. Anger at his situation , anger at our teenagers not complying with his rigid rules etc, also early life traumas like father leaving, Marriage breakup, etc.
If you can come to terms with things, and make the most of each day. List things you can still do and be grateful for them, sing queens song “ it doesn’t really matter” every time you are cross about something - I think it helps.
Write something down that you are worrying about and allow a certain time of the day to think of it then try and banish it from your mind if it pops in some other time. Try and let things go that you can’t do anything about or things that don’t really matter. Not easy I know.
Thanks for your further suggestions. I feel for your husband because PD eats away at your very being, destroying who you are and leaves you feeling very bitter. I am nothing of the person I used to be. You are of course right in that I am still alive, so in real terms 'nothing really matters', but sadly PD does its best to rob you of that outlook somedays. I will try and use your suggestions next time something happens. All the best to you and your hubby.
The information ParkBear stated and the link provided was very helpful.
I haven't tried it yet, but I just finished Shifke's book and if it's all true, I believe it might help you to read it. There are some things he said in the first section that are reminders of trying to turn your negative thoughts into positive. In the 2nd section he goes into some detail of his daily routine. I believe his day consists of approximately 3 hrs everyday. I can't imagine doing something every day for 3 hrs. But if it helps it would be worth it.
I actually came across Howard Shifke's web pages way back around the time I was diagnosed. Unfortunately it made no sense back then, but then neither did much else as I struggled to comprehend my diagnosis. I've looked online and reserved a copy with my local library. Like you say 3 hours a day seems a lot, especially when trying to hold down a job, but if that's what it takes to rid myself of this horrible disease .....then I'm willing to give it my best shot.
Thanks for engaging with my post. I am interested to hear that you were actually in contact with Howard Shifke. The people who have 'recovered' seem so far removed so it is great to hear that someone has had personal contact. I am wondering whether you would be prepared to share how the constant went and any insights gained from him?
it was when he first came online with his pd recovery i thought he was a scam so i called him in florida and discussed his pd program....qi gong etc.....it helps to meditate but i found nothing actually "fixes" pd..........cheers...hang tough...
I don’t think it will become overwhelming because you’ll end up naturally following what resonates with you most personally.
I met Bianca Molle, she lives near me, went to New Mexico twice for Qigong, went to two of Dr. Joe Dispenza’s workshops, read some of Shifke on line. I stay very committed to Dr Joes work as it felt like the right path for me. I also now believe it is very responsible for reducing reversing many of my symptoms. But not as much happened for the first year as happened in the second year of work.
I am interested to hear that you were actually met Bianca Molle. As above would you be prepared to share how the constant went and any insights gained from her? Also would you be prepared to share what Joe Dispenza bits have worked for you and what PD symptoms have improved please?
I met Bianca for lunch about 3 years ago. My friend with PD had her contact as he had attended some local Qigong classes in Marin. Meeting with her inspired me to go to Mingtong’s facility in NM. @parkbear has been there too.
No other insights from Bianca, though the big difference is she had the foot injury which she writes about in her book. I couldn’t relate to that part. She seemed well and was generous with her time.
DrJoe, I recommend reading “you are the placebo” watching him on YouTube and if it resonates buying his online Progressive Workshop. Great place to start. Then I downloaded about 15 different meditations overtime and use them all. During the first year of meditation my balance improved incredibly I was also taking B1 which I believe aided in this. During the second year of meditation my log leg and leg drag went away and now my footfall or gait strike is normal. As for my tremor it’s reduced in volume and is mild and intermittent but still present. I’m also able to turn over in bed and don’t seem to have symptoms during the night.
Thanks for the further information. I am particularly interested to hear you've managed to reverse/normalise some symptoms. Who would have thought that something as simple as turning over in bed could be so complicated? It is really pleasing and inspiring to hear that you have altered your PD path in such a positive way.
I have to say that their is something that is drawing me to Dr Joe so I have ordered his book 'You are the placebo' along with 'Breaking the habit of being you' book and CD meditations. I intend to give it a go and run it alongside doing some beginner Qigong. I am hopeful that I find something in amongst it all that resonates and makes me feel like I am on the right path.
Wishing you all the best for continued improvement.
I'll certainly take a look. From this video he certainly seems like somebody I could listen to in terms of practicing along with him. Wishing you all the best.
I’ve been thinking to give Dr. Joe a try. Personally I find I can really connect or explore something when I can go to a workshop and immerse myself in the experience. I went to the Chi center for a couple weeks a few years ago, and I am going to a qigong session soon this evening in a local park! I stayed away from medication for the first four years, but now I have started carbidopa levodopa, and it’s a relief! The medication is working well in conjunction with My general health practices like a healthy diet, exercise acupuncture, chiropractor, yoga… but don’t be afraid if you need to take medication. We are lucky we have options.
Thanks for your advice. Sadly I am afraid, which is why I am reaching out to try and find something that will help me. I take your point though. We do have options. Wishing you all the best.
What is it that makes you afraid of medication? The description you provide in your earlier posts leads me to believe that an appropriate dose of CL might bring you some pretty significant relief.
Apologies for the delay in replying, lots going on my end. You raise a good question and I thank you for your insight and concern. Perhaps it is the PD itself that is driving my fear. All I know is that after 3.5 years of being in the wilderness with nobody to discuss alternative therapies or medication with, I now feel very fortunate to have connected with a 'think outside of the box' group of people. Whilst I may well have to return to the question regarding medication, for now I am just happy to explore some of the other avenues that have kindly been brought to my attention.
Hey, Salvation: Welcome although I know this probably isn’t a club you really want to be part of LOL. But anyway, I think if you email Mr. Shifke he will email you information about his shorter daily program. Or if I can I’ll see if I can find the information. I had contacted him months and months ago, exploring like you’re doing and he was very kind and sent me this link for the quicker faster daily program. But at the time I even felt that was overwhelming. I sort of got interested in just studying the Qigong on my own. Then I got sidetracked and didn’t pursue it but I would still like to. It is overwhelming; there are a lot of directions to go in. I think it’s a matter of finding something that resonates with you so that you’ll keep up with it.
You are right it isn't a club I wanted to join, but I am grateful for the warm welcome that you and the other members have kindly afforded me.
Your contact with Mr Shifke sounds interesting as does his shorter daily program. If you do happen to find it that would be appreciated, along with any other advice he may have shared with you.
As you say it is sticking with it that seems to be important. After all it's probably taken me years to get into this mess so I can't really expect a one week quick fix!
I wish you all the best in your pursuit of finding what works for you.
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