Living with REM Behavior Disorder

Hi,

Preface: this is a long message, I apologize in advance, but maybe it will help someone.

I have read the other postings today as a result of having episodes the last few nights where I have managed to tear the ligament off my knee cap again, so I am sitting here with a soft cast (I have a huge collection of casts - anyone need one?) on hoping I can get better by New Years cause i have plans to go to a concert, which i want to do really badly. But who knows if i will get better by then.

Since I do this in my sleep, while wearing a full leg cast, I will not know until I wake up in the morning. For all you kitty lovers out there, just a bit of funniness (it was not funny at the time) my cat twice last night found my toes on my damaged leg a little to tempting (I was probably wiggling them in my dream) and she bit my big toe, which immediately caused me to wake up, jerk my bad leg (causing more damage) and resulted in a few choice words to kitty. Bad enough I hurt myself in my sleep w/o anymore help from kitty! I wanted to get up and shoo her away, but since I can’t walk, I was forced to go back to sleep until the next kitty toe attack occurred later that night. Bad kitty!

Anyway, I guess the first thing I would like to share is that my problem with RBD is not as bad as those others I have read in this post. My heart goes out to you all especially the young ones. If you have read the info in this site, RBD is caused by damage to the brain stem, which can be caused by numerous factors. Having RBD at such young age (teenage male and 20ish year old female) is very concerning. All I can say to these young people is get to a neurologist and get an MRI scan completed. Now. Right now. I could not imagine having RBD at those young ages. If you do nothing it will get worse. If you do not have access to private healthcare go to the county. Just get help.

However, I must admit, I am the worst at getting help myself. One reason is that i do not want it on my medical record. There is really no cure anyway (for my particular affliction), just drugs that can gloss over the symptoms. I do not take well to the drugs as I need to work during the day. As long as my RBD is somewhat in remission, I will deal with it. The problem now is, after over a year of non sleep injury, here i go again. I am just so thank ful that it is a holiday weekend and hope to be back on my feet by Wednesday or Thursday at the latest. I really do not want to gimp in to my meeting with the boss on Wednesday with another lame excuse, such as, I sprained my knee playing basketball with my 17 year old, or, the tried and true, i slipped getting out of the tub. Back in the late 90s when I went for over a year in and out of leg and ankle casts, people at work thought I must have been either the unluckiest guy in the world or the clumsiest guy in the world. (No way I was going to tell them I injured myself in my sleep. Back then they did not even have the name RBD yet. I would have been , and maybe even still today, looked at as a freak) RBD work management is not easy, especially when it is combined with the severe depression that sets in from the experience, of not being able to sleep cause too scared to sleep, and finally falling asleep for an hour and waking up injured again. A terribly vicious cycle.

My history: Now in late 40s (YOA). early nineties was 30 pounds overweight, high stress job, diagnosed with hypertension = 50 mg atenelol daily. Uncle and father were diagnosed with sleep apnea, i was exhausted too, decided to get a sleep study done. Could not fall asleep in study until after 7 or so hours. Finally fell asleep, was diagnosed with sleep apnea after only 15 minutes asleep. Sent to neurologist. Put on CPAP machine and Parkinson’s med, sinemet. At first all ok, then within a couple weeks woke up with a broken ankle. First casting. Then off and on over the years kept hurting myself, once in full leg cast for six weeks. I would wake up and get out of bed and fall down. Also several episodes where i would wake up in bed while hearing someone scream at the top of their lungs at my wife while holding her forcefully her two arms and shaking the bejesus out of her and would then realize it was me. That and being woke up as I walked outside around the pool naked which i still don’t remember. Although some with RBD remember their dreams I do not anymore. However, when it first started i did recall the dreams and they usually involved being chased by a villain or monster ( I used to be a cop).

By the way, here is an interesting add on as i proofed this: I do not know if anyone else out there has experienced this but i used to live in a house where I was convinced the house was haunted. I had heard that someone had died there ( a man). I would have these unusually realistic dreams where I would feel someone standing over me and holding me down by grasping my upper arms. i could feel the shift of pressure in his fingers, but i never saw anyone, just felt it. It was so damn real. After playing dead for awhile i would start shouting (silently) “let me go!!!!!!! Then one final scream came, this one was out loud and very very loud, at the top of my lungs “LET ME GO!!!!” and i sat upright and woke up, completely drenched and my heart racing. I don’t believe in ghosts, but I had that dream often and never had it once years after I moved out of that house. I’m sure it was just a bad RBD dream. But I’m never going back to that house again!

Things then settled down for a bit and started up again around 2003. Went to a neurologist who went over my history and said, you take atenolol for high blood pressure? I said yeah. He said that could be the cause right there, try cutting your daily med in half. Now i had been on atenolol since 1992. After all those years could that be the easy answer? If so, how stupid of me. So I took half. And it worked. Most of the time.

Speed ahead to October 2006. Was out of work for six months, was laid off, was running out of money, it was almost shopping cart time. Finally i picked up a job which turned out to be really big stress right on top of the stress of being unemployed. I started injuring my ankle again, the left one again. My left foot is my kicking foot, i used to love kicking a football as hard as i could in the sweet spot when i was a kid. Apparently I also dream about it. Anyway, i got home one night and sat down and noticed my left index finger started moving on it’s own. What the hell. Over the next three months it got worse, from all digit tremors to arm and leg trembling. Mostly occurred at night when get home, after a stressful day. Once i got used to the job, after three months, the symptoms quieted down somewhat, and i learned to sit on my hands at work and be careful not to let anyone notice my shaking fork and spoon when i was eating. So, as usual, i went on the web to self diagnose my self and learned that 60% of those with long term RBD convert to Parkinson’s. Well that explains it. There is no cure, so as long as i can fake it I am not going to go to the doc. I do not want it on my record. I work in healthcare and if anyone out there is gullible enough to think your medical record chart is private, think again. On top of that I am in a right to work state and can be let go for any reason, so i do not want to give anyone more of a reason. Bedsides, if i get diagnosed and have to apply for a new job, technically I would have to disclose such.

On top of it all, in doing further research, it turns out that a high percentage of people who have PD also have Alzheimer’s. This one i have really been struggling with as i have noticed lately I forget things, I mean just flat out forget things like what was said to me recently. I am constantly struggling for the right word and now mostly just change my sentence to cover up. I am sure people notice this as I see them more and more giving me the missing word, when I pause. At xmas we played “are you smarter than a fifth grader?” After each question my mantra became, “oh, I know that one” but could not come up with the easy answer. Another disquieting moment in my life.

So, where to go from here? Back on the internet again today for a RBD update. Luckily, there is more research going on and more case histories available now, but no cure. I guess i should just consider myself lucky that it is not worse at this time. PD and Alzheimer’s is very concerning, but RBD is f#$@^%G scary.

Well in not so short that is my story. I spent the time to write this as I would love to establish contact with someone who is experiencing the same issues. Maybe we can help each other. At least emotionally. I do not want to post my e-mail address here in so if you are out there just mention “contact John” in a follow up posting and we will figure out how to get in touch.

Oh yeah, last thing: It is possible our only hope is in brain stem cell research. We need to form a support group to promote this. Here’s hoping our next president has some brain cells and will push push push. Time is not on our side. It’s now or never for us. And for our children who will have to support us, when we are at rather young ages, cause we will not be able to work and not be able to recognize our children, and their hell will be taking care of us during the best years of their lives knowing that RBD and PD and Alzheimer’s could be knocking on their doors in a few decades. Let’s stop the cycle.

:o)