Rock steady boxing

@mariemarie Hi Marie: I am so glad that you started this new discussion on Boxing for Parkinson's. I know of many others who are taking this class and have praised the benefits! Here is a Youtube video that describes it: https://www.rocksteadyboxing.org/about/videos/.

Is anyone else in our group interested?

Teresa

Thanks Teresa. the participants told me it's an excellent program.

Hello Marie, @mariemarie

When we last heard from you, you had been evaluated for the PD Boxing program. Have you begun the training yet? If so, please let us know how it is going for you. It is always good to have a first-hand report.

Teresa

Hi teresa,

I attended 3 sessions and realized not for me. However, many participants who have been boxing for a year love it. All have PD. I enjoy Peddling FOR PD better. I pedal 3 times a week. There are 8 of us and all have PD. We have an instructor certified in PD exercises. I work up a sweat which is good. I also have a personal trainer i meet at fitness center once a week for an hour to do strength training.

Went for 3 month visit to neuro yesterday. Said i still have mild Parkinson. Still dont need PD meds but must continue exercising.

Have u heard of pharmacogenomic testing? Its a test to determine how a person's genes may affect his or her response to meds. Mayo co developed.
Thats all i know about it.

Thanks
Marie

Hi Marie @mariemarie

I appreciate your feedback regarding the Boxing for PD program. As I have considered doing it myself - can you explain why you decided it was not for you? Was it too physically difficult or just not enjoyable?

Regarding Pharmacogenomics testing. Yes, I've heard about it and many people have been helped by it. Here is a link to a website from Mayo Clinic http://mayoresearch.mayo.edu/center-for-individualized-medicine/drug-gene-testing.asp. We have had some folks on Mayo Connect who have discussed it (in enthusiastic terms) about how they have been helped by this testing. I'm going to tag, @kdubois, another volunteer mentor who has been helped by this testing.

Teresa

Hi @mariemarie, I have had pharmacogeomics testing done at Mayo and also by their company, OneOme. These tests saved my life as we figured out that for 12 years, I had been prescribed medications that I genetically don't properly metabolize. For me, this included drugs like Nexium (and all other PPIs), metoprolol, several anxiety meds, and more.

Of the nine (9) genes that Mayo originally tested, my Mayo pharmacist told me that people usually have one or two polymorphisms. I have seven (7), so I knew that I needed to get as many pharmacogenomics tests done as possible.

Therefore, once I found the OneOMe 22-gene test set, and I realized that it was very reasonably priced, I knew that I wanted to get them done even though some tests were repeated because the cost was so low. (But I had to have one of my Mayo doctors order the kit because NY has not certified OneOme, and I live in NY... but my doctors living in MN are allowed do because MN has certified OneOme.)

Ends up, for the total of 23 genes I've had tested, I have 13 polymorphisms while most people probably have just a few, and this finally explained why I had been sick for so many years -- I had been prescribed medications that I don't properly-metabolize for more than a decade.

They figured out that many of the drugs I had been prescribed for 12 years, including Nexium / proton pump inhibitors, metoprolol, fluoxetine, duloxetine, and many more, are drugs that I metabolize slower than intended per my genotype, and this is why I was slowly-and-increasingly more ill for 12 years. Additionally, these tests figured out that I metabolize caffeine slower than normal. They figured out that if I am given the cancer-fighting drug Tamoxifen after I reach menopause, that it can actually cause me to have cancer. They also figured out that if I am given the drug allopurinol, it will cause my dermal layers to separate (Stevens Johnson Syndrome) and this could kill me. These tests also explain why I feel basically zero pain relief from drugs like percocet, vicodin, etc.; the enzyme in me that metabolizes these drugs is polymorphic and has a "poor" status, so my body metabolizes it much slower than intended. This also explains why when I'm given Dilaudid prior to surgery, it takes me many, many hours to wake up afterward.

Had I not had these tests done, we are fairly certain that I would have died from drug-induced liver failure last year. After ceasing medications that I don't properly-metabolize, my two-and-a-half page-long list of illness symptoms has mostly disappeared, and I have lost 60 pounds with no experience or diet changes. Ends up that the drugs my home doctors were using to treat my illness symptoms were actually causing them, as well.

@kdubois

Thanks for sharing your story with us!

Teresa

Teresa, sorry for delay in responding. The Rock Steady boxing had 20 PD people in my class and one instructor. As a newbie in the 3 sessions I attended, I felt lost. Secondly, too far to drive to gym (1/2 hour). The fitness center I belong to is 8 minutes away where I take Pedaling for Parlinsons 3 times a week. I also sweat more in pedaling. Neurologist said must do exercise that makes you sweat, The fitness center is looking into forming a box class for PD. Instructors have to be trained first...probably take a while. You may want to try it. PD participants in boxing love it. but they have been doing for over a year.

Hi @mariemarie

Thanks for letting me know your thoughts about the program. I'm in a similar situation - I'd have to drive a ways to get to a PD Boxing class - so I'm not sure it is worth it to me. I belong to a nice gym and find walking in the pool to be an excellent exercise for me - it is gentle on the joints and I keep cool during the exercise time. One of those win-win situations as far as I'm concerned.

Teresa

Kelly. Thanks for sharing. Can i order the test or should my neurologist order? The cost is $250. I'm not on any PD meds. I do take 10 mg Lexapro (generic). Im interested in future meds that i may need for PD. Is this test good for possible future meds? Thanks.