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Topic Promising treatment Go to previous topic Go to next topic Go to higher level

By lurkingforacure On 2012.10.03 09:14
This is very promising to me, check out the results::

http://www.melodika.net/index.php?option=com_content&task=view&id=415216&Itemid=54

Average 62% improvement? I can't wait to see if we can participate in this study :)

By jcoff012 On 2012.10.03 09:34
Everything I have read about this comes directly from the Helen Foundation website. I went online to see if there was collaborative information from other sources. I don't see any.

I hope it works for many, but for now, we will stick with conventional therapy. Good luck if it works and please let us know if you use it.

We all are constantly looking for new ways to help our PWP, so if this does indeed help, wouldn't that be great!

By lurkingforacure On 2012.10.04 12:49
I called this place and they want $6,995.00 up front and you don't even have to physically go there. While small doses of hydorcortisone may in fact be helpful, the way this is being sold and marketing renders it unavailable to most. In talking to them, it seems that their "62% improvement" rating was derived from patient diaries and not from a blinded third party who observed the patients before, during, and after....so this number loses a lot of credibility to me.

We may ask our doc to script us tiny doses of cortisone just to see. If anyone does this, please share your experience.

By LOHENGR1N On 2012.10.04 15:13
Sounds like another snake oil sales pitch to me.

By dkleinert On 2012.10.20 00:01
The BEST promising treatment we have found is at a website called:
Delay the Disease.....www.DelayTheDisease.com and Delay the Disease Facebook page. We ordered all of the DVD's, and the transformation I see with my PD husband when he does the targeted exercises is AMAZING. Now getting him to do them daily as the instructor recommends is the problem. Go to You Tube and type in Delay the Disease and see all of the incredible testimonials. This is new. David Zid was a personal fitness trainer when one of his customers, an ortho doc, was diagnosed with PD. David has researched and developed these targeted exercises just for all aspects of the disease. WISH we had had these 7 years ago, however, we are working with them now. The 2nd functional DVD set of 2 is the best one. You can jump between specific areas of PD that you are having problems with using the menu - such as Freezing as an example. If you want to concentrate on that, then just use the menu and go to that one. Take a look - they are fantastic. I especially love the Ziddy Sticks that help with gait length and balance, also the ladder for balance and freezing. There is also a 12 week challenge that we did - it is 5 daily exercises that take about 10 minutes each day along with a writing exercise - it is on the website......check it out!!

By mylove On 2012.10.20 11:26
How do you get your spouse to try something like this? We've tried walking in the evenings on occasion, and it's very seldom that we actually are able to get out. Sometimes I feel like a cross between a cheerleader and a drill sergeant and I know he resents me for doing it (as I would - who LIKES to exercise?).

It's hard for him too, because up until we tweaked his meds (see the other post) he has been pretty active and normal in his daily activities. (Installing gutters on our house, mowing the lawn, going fishing, building the displays for my artwork, refinishing furniture, etc) So, he is getting exercise so to speak.

However - we both are gaining weight, and I feel like doing something exercise related would do double duty - help with the weight issue and help delay the PD. I just feel like everything out there is geared to the really impaired, progressed stage individuals. How did you find this program? Is it valuable for someone who isn't at the freezing, falling, etc stage? If I get him to look at it, do you think it will turn him off and make him think "Oh, well, this isn't me so this doesn't apply"? I'm up for something new if you think it will help!

By Arly56 On 2012.10.20 16:14
My mom and I attended an information session a while back, and there are many targeted exercises that are fantastic for PD. A physiotherapist with PD knowledge could do a fabulous job at recommending exercises, I would think.

One thing the physio at the session did say is that while walking is a great thing to do, the PD person usually has to concentrate more on walking, so a lot of talking, pointing and "look-at-that" behaviour is not helpful to the concentration.

By dkleinert On 2012.10.21 20:07
David Zid, the person who developed Delay the Disease, is a kind, engaging person. He gently walks thru and encourages his audience to go thru the exercises with him. Many of the exercises are done sitting in a chair. David offers many different ways to do the exercises. I have been impressed with the impact the exercises had had on my husband on the days he does them. David recommends that something be done daily, and I can see the impact. Watching the YouTube videos give you a good idea of what is involved. I think HOPE is a huge medicine in this disease, and that is what David Zid and his DVD's give to the person and the caregiver with PD.

By lurkingforacure On 2012.10.21 22:32
I bought the "Delay the Disease" DVD when we were first dx'd years ago, my husband took one very short glace at it, saw the guy sitting in the chair doing the exercises, and said "I am nowhere near that stage" and that was the last time the DVD was ever out of the box. There was such a huge disconnect between where he saw himself at that time and where he saw the people needing and using those exercises that he never even gave them a chance. Mylove, that may be what you are talking about.....I never was able to convince him to even watch the DVD, even when I told him I would do the exercises with him. If you figure out how to get your husband to do them, let me know!

By mylove On 2012.10.21 23:05
YES. You hit the nail on the head. That's exactly what we're going through. As for walking, he's not at the stage where he has to concentrate on walking so the sightseeing thing is actually more useful than not, because it gives us a reason to be out doing it. But once you've seen the loop around your neighborhood once or twice it gets pretty boring. ;) And I can't imagine persuading him to drive somewhere to go for a walk. (I think that would fall in the category of a 'hike', and is probably out.)

He did Tai Chi for awhile with the local Parks & Rec and loved it. The challenge with that group was that the instructor in that case wanted to do the 'fast martial arts' style rather than the 'precise balanced' style, so he wasn't able to keep up as well as he liked and dropped it. We got a DVD to do at home, but like you said - it hasn't been out of the package yet.


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