The only thing we know for sure....

[aggiebiker]

In all my conversations with my neuro and research online I have found that the only thing we know with absolute certainty is that exercise delays the progression of PD.

The Stalevo, and to a lesser extent Azilect, have to this point successfully managed my symptoms so well that I have returned to running. I have worked my way back to 2 miles a day with my sights set on a 5K next month and a 10K after that. The result has been the conquering of my lingering depression, better leg strength, increased stamina, better and longer sleep cycles, and more.

My point is this. I was diagnosed in June of this year at the age of 45. In short order I slipped into a depression that robbed me of the joy there is in life. I withdrew from my family and became angry and resentful. Running has given me back my life. I urge those of you newly diagnosed and those that may have given in to the darkness to stay active and stay plugged in. Get active in these forums, join a support group, and get active with a exercise routine that includes stretching. You will be amazed at how much better you feel physically....and mentally. I for one refuse to be defined by my illness.

Happy Thanksgiving.

[hilarypeta]

Thank you that cheered me up a bit. I have recently been diagnosed and told my family and fel as if I have leprosy. I alwaystry thhe alternativeroutes. I am also a believer in exercise and walk a lot and do yoga and keep fit. I like running but had 2 falls which took a bit of confidence away.

I am trying homepathy. I think it has been caused by heavy metal and pesticides etc so am trying supplements to get rid of that. Any alternative ideas I am open to . Ideas. I found one site that recommends supplements black seed oil, magnesium, co enzyme Q10 _and others to help the body hheal itself;.. I think it was called reggenerative diseases? anyway all ideas for a cure or a slower downer welcome!

[ram927 in reply to hilarypeta]

I feel you are correct Erercise evry day at gym bike abd yoga and pilate Had to rehab two knee replacemenets which thenhelped and helps my Pd

[DeParkiePoet in reply to hilarypeta]

Hello: My name is Joe McEleavy, I live in Florida, I was a licensed Acupuncturist at the time of my Diagnosis in 2005. I too believe in supplements, homeopathy and anything else tha twill allow me to function better. However, since PD is idiopathic, without a known cause, anything is possible, in terms of a causal factor. I had mercury testing done- 8 times normal levels- so I am trying oral chelation therapy and a myriad of supplements. I did not tell anybody about my Diagnosis for about a year, I was ashamed. Let's chat and keep in touch.

[Susie01 in reply to DeParkiePoet]

Joe,

I have had acupuncture in the past, I am just wondering if your tremors were significant? My tremors are constant, even with medication, though they are nothing in comparison to what they were without medication.

I am a nurse by training, but can no longer safely carry out my duties and a nurse. When I was still in the field, I was suppose to do blood draws. My hands shook so much that I felt for the patients, the hospital I worked for still made me do the draws...

[DeParkiePoet in reply to Susie01]

No Susie my tremors are mostly internal. My cognitive functioning is still good enough to do some work on family etc. but I can no longer "needle the public", as you well know nobody wants a shaking hand with a needle coming at them. Fatigue, insomnia, uncertainty etc are my main complaints. As with any Specialist, the practitioner and their experience/ skill is most important. I worked on a PD px before I quit, I got her to a better place for about a year, then she regressed. I hope that helps, I'm in florida where are you?

[Susie01 in reply to DeParkiePoet]

I am in Chattanooga, TN. The Acupuncturist I used was also an MD and runs an alternative medical clinic here. He has other people on his staff who are also licensed but he usually did my treatment because I was a friend of the family.

I still marvel at the hospital insisting that I draw blood even when my hands were shaking so badly. But it was before diagnosis and they had it in their heads that it was DT's, yet never did any random testing for drugs/alcohol. The cognitive changes haunt me daily. As with you, sleep is a problem and probably contributes to the cognitive changes.

By the time I was diagnosed, I was stage II with some stage III symptoms. Going back in my medical records, I had complained of the "shaking inside", probably similar to what you are experiencing right now, that was in 2004. I also had the exhaustion at that time. I had a bought of pneumonia, the doc that it was due to the pneumonia.

[DeParkiePoet]

I agree there is no doubt that exercise is really beneficial, but it must (?) be "forced". In the sense that you are required to stay with a pace out side of your control, eg tandem bikes, stationary bike programs, etc.. I think that we whatever we do to slow down, supplements, exercise, research and communicating like this have with other PWP sends a subtle message to our selves> "WE WILL FIGHT THIS UNTIL WE WIN". By taking care of our bodies we take care of ourselves. Confidence, certainty come and go, Fight through the down times and enjoy the ups!

[rory3028 in reply to DeParkiePoet]

I agree exercise is critical, but I seem unable to succeed at it. First of all, I am in a wheelchair outside of my home because I can only take a few steps on my own, and I use a walker at home. I had to stop driving almost ten years ago, so one of my biggest problems is getting to the therapy locations. I cannot find transportatio and even if I could, I would need someone to push my chair, so I am dead in the water before I even start. Then, if I could pull off the miracle and actually get there, my balance is so bad that I am limited in what I can do. Every single therapist I have seen has insisted that I use weights (very small), but when I do the pain in my limbs which is always there, becomes unbearable. I am very frustrated, because my muscles are beginning to atrophy. Do you know how to take care of these problems. I want to fight until we win, but don't kow how.

[Parkersclimb]

I am so happy to see the comments on exercise because it is ALL true. My husband was diagnosed in 2006 at the age of 51 - in reality he provably had PD for 2+ years at this point. He increased his physical activity and built a strong workout regimen and it is making all the difference in the world! We climbed Mt. Kilimanjaro in July 2011 as a fundraiser for the Michael J. Fox Foundation and he was amazing! He was recently invited to play in a golf tournament benefitting the Parkinson's Association! See our blog at parkersclimb.com

We will climb more mountains - we are not stopping until we have a cure! Happy Thanksgiving to all and keep up the amazing work!

Pkp

[Susie01 in reply to Parkersclimb]

That is awesome! I am a former runner but bad knees have limited me to walking. I was also a gymnast, so usually do stretching every day.

[ram927]

My daughter has taen up,the fight against PD by a GOLF tourney bc of me in Sioux Falls SD benefiting MJF foundation where we went in 2010 and walk Central Park awareness walk for PD I like the Killimanjaro idea and also maybe a rim to rim hike at thre Grand canyon would be great I worked there as a rnaager for 8 years and was where I was dx in07 with PD great to hear from other keep up the fight and as Dylan Thomas says "DO NOT go gently into the night but rage against the dying of the light"

[NanCyclist]

I'm 66, diagnosed with PD 4 years ago and have ridden my bike across Iowa twice and climbed Mt. Kilimanjaro with a group of MS and PD patients last summer, possibly the oldest woman with such a disease to do so, or surely one of them! Pedaling for Parkinson's changed my life completely. Check out pedalingforparkinsons.org. If you cycle, the most important thing is to keep your rpms between 80-90. Go for it! Your life may just be beginning.

[Hidden]

Exercise and diet (plus my meds: Stalevo & Amantadine ) have made a GREAT difference in my PD. {I was diagnosed in 2006 at the age of 56...had a VERY rough 1st 3 years!!}

[DavidGreaves]

It's great to hear so much positive talk about Exercise and Parkinson's. I would guess that there are more people out there with Parkinson's who are exercising regularly than I realised. In a few weeks time several poles will come om stream to give us a more objective picture.

In the mean time,who would like to take part in a Pedal for Parkinson's event in early May next year? Three teams are needed for a five day challlenge. Details to follow. Drop me a line to davidgreaves@pedalforparkinson's.co.uk or simply respond on this blog.

[aggiebiker]

I am flattered at the response this generated. I am still exploring ways to exercise my body. On the advice of my neuro I am also looking into yoga and pillates, not sure which I am going to try first.

I was an avid cyclist and completed several MS 150 rides in support of MS research and would love to see something similar for PD. (I'm in the states)

Best wishes to all that responded and I wish you continued health...remember PD does not define who we are!

[DeParkiePoet in reply to aggiebiker]

Very well put Aggie! Arkansas? I do yoga n pilates n tai chi n everything I can to stop/slow my symptoms. Tai chi is grerat for balance, I used to teach it, but now only practice alone. It is a moving meditation...I'm in SARASOTA FLORIDA BTW

[Hidden]

I am new to this site, but totally agree with exercise and stretching. I do take meds, but when I do not do my daily program I get worse. I was diagnosed in 2006 with many of the symptoms. I think that along with regular exercise, interval training (I use a recumbent stationary bike) is essential. It not only has improved my movement symptoms, but even my sense of smell has returned.