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What should I be doing, not dx with Parkinson's yet

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Parkinson's Disease
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Posted 4/29/2015 9:55 PM (GMT 0)
I'm a 60 yo male. about 24 years ago I lost my sense of smell. I didn't think anything of it. about 5 years ago I developed RBD. I saw a Neurologist. He put me on Klonipin. He has never said anything about PD. I just recently read an article that said the loss of smell and the RBD together give me between 65% and 80% chance of coming down with PD. For years if have had the problem where I get out of a chair, take two or three steps and fall back into a chair to keep from passing out. It is happening more often now. I don't have any tremors yet. Does anybody know what I should be doing to slow down or prevent the onset of PD? Is there somebody who has been down this road that has some suggestions? Please advise.

Thanks.
Posted 4/30/2015 5:39 AM (GMT 0)
new53,
Welcome to Healing Well.
OK, I give up ... what is RBD?
Not every person with Parkinson's (PWP) has loss of smell. I didn't initially - think I have some, but not total, loss of smell. Only 70% of pwp have tremor - I do. You mention getting out of a chair and then falling backward - is that due to a loss of blood pressure? Do you feel the Klonipin addresses your symptoms? I have never heard of it prescribed for Parkinson's. Is your PD diagnosis of yourself based totally on the fact that you have a loss of smell and RBD?

I think the first step is getting a diagnosis from a neurologist you have confidence in. The most specialized doc you can get regarding PD is a Movement Disorder Specialist or MDS. An MDS is an neurologist who specializes in movement disorders such as Parkinson's or Huntington's disease. They are often few and far between - most common in larger metropolitan areas plus with large hospitals.

Best of luck ... and keep us posted.
lizzy4451
Posted 4/30/2015 3:53 PM (GMT 0)
New53:

Daily exercise helps a lot. Has been working for me. I was diagnosed over a year now. Not showing any symptoms.

Posted 5/18/2015 10:52 PM (GMT 0)
Thank you ElTorito and Lizzy4451 for the information. RBD is R.E.M. Behavioral Disorder sleeping disorder. I act out my dreams at night. I do a lot of punching and kicking. I even jumped out of bed head first into the wall three feet from the bed one night. The Klonipin prevents me from acting out my dreams.
I think that falling back into the chair is due to a loss of blood pressure. Not sure. I read on a website that getting dizzy is one of the many possible symptoms of PD. Nobody has diagnosed me with Parkinson's Disorder. The Klonipin is strictly to stop my violent movements in bed.
I am seeing a neurologist tomorrow. I have seen my GP since my last writing. He assures me that I don't have PD. I feel better about it now. I'm optimistic about my appointment tomorrow.
Thank you ElTorito for the tip on exercise. I will start working out.
Posted 5/20/2015 2:09 AM (GMT 0)
I have to add that I am HUGE on exercise. I've been participating in a PD exercise program since 2006 and believe it has slowed my progression and certainly has kept me more agile, flexible, stronger, etc. I am definitely a believer in the benefits of forced exercise.
lizzy4451
Posted 5/20/2015 9:40 PM (GMT 0)
Well I have been told that I absolutely don't have PD. I was told that the articles that I read relating RBD and Parkinson's are bogus. The neurologist said there is no medical evidence that there is any connection between the two.
To lizzy4451 and ElTorito, I say good luck and my prayers are with you. I hope they come up with a cure soon and you beat this.
Take care.
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