Shannan
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REM sleep disorder was one of my very first symptoms. I’ve never gotten out of bed but I do kick, punch, fight, yell, curse, cry, bite, scratch, etc. Like the original post said most dreams are running from something or defending yourself….I very rarely remember the dreams. Melatonin made me excessively drowsy in the morning and didn’t really work so I take 0.5mg of Clonazepam before bed and it seems to have it mostly controlled. I am 39 now, was diagnosed at 33, and was experiencing 1st symptoms at 29.
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Diagnosed at 33, now 39. Tremor in right leg and foot Dystonia toe curling were some of my first symptoms. Dystonia is totally annoying and gone to inversion walking on outside of my foot and totally unpredictable. Tried Botox several times without success.
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You have to remain positive and put all your trust in God. He will guide you through every step, may not be easy, but trust Him and He will be with you. Hope is your best defense and don’t settle for anything less than the best treatment. Keep fighting the fight!
Diagnosed at 33 years old and now 39 years old and have a 3 1/2 year old daughter. It’s not easy but not giving up my dreams! Trusting God every day…even the hard days.
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Oh dear that must be annoying to say the least. I also get foot Dystonia only…right foot. I literally have to walk on the outside of my foot and try not to break my ankle! It’s painful, completely unpredictable, and no Botox did nothing for me. I feel for you and what you are going through. There’s so much more to PD than tremors.
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Anxiety is the bane of my existence since PD entered my life! You have got to talk to your doctor about medication to help you manage. It takes time to find your right medication and dosage. Get an order for a motorized scooter or a Parkinson’s walker. It comes higher to help stand up straighter. I understand your struggles with the stress of symptoms and situations. …I’m only 39…..but I’m not ashamed to tell people I have Parkinson’s and it’s more than tremors so they will understand and they are fine and allow you to cut yourself some slack. I’ve secluded myself too because of the fatigue and the Dystonia in my right ankle….I don’t want to feel stuck anywhere and that makes me more anxious and then other symptoms start and it’s a viscous cycle. Try to keep pushing forward and get out there….once you start secluding it’s hard to stop!
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I just had DBS at 38 years old in October. Like another post said the benefits are not immediate. The further out from surgery the more your symptoms come back and it’s up to your neurologist to determine the right combo of your medication dosage and the DBS programming. And it takes several programming trips back during the initial months to get it right. I’m going through that now. You have to ask yourself why you are considering DBS to begin with. What symptoms are you wanting to be better controlled, is medication the issue, side effects of the medication. Mine was the severe Dyskinesias I developed. Once you know your why you need to discuss that with your neurologist and the surgeon for the best target and the realistic results. You may have some new symptoms post surgery but that’s probably because they were already in the beginning stages. Memory changes should be minimal and temporary…unless you have a surgical complication of excessive bleeding, which is less than 1% if I remember correctly. You have to undergo a Neuropsychological Evaluation before to be approved for the surgery. It checks your current memory and problem solving abilities. If you are too impaired currently there is a higher risk of more impairment after surgery and it being irreversible and they wouldn’t approve the surgery. Don’t worry about the Neuropsychological….it’s not about getting everything correct, it’s about understanding directions, recognizing if you made a mistake, and just trying to do the task asked of you. Even though it’s early and I’m still having struggles I can say I’m glad I had it done. No more Dyskinesias!!!!!
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I’m 39 and diagnosed 5 years ago; just had DBS in October. It seems like fatigue has been a predominant part of my entire life. I used to dance with a local dance studio for 12 years and I played softball in my pre-teens and teens. But I found I always loved a long nap. ..I mean 2 to 3 hours! Now with Parkinson’s I’m exhausted all the time. My challenging days even more so. I wish I could walk 1/2 a mile. I’m just glad to get across the short parking lot into my office without using all my energy! I have a gym membership and I know it’s good to prevent disease progression but I’m so tired I just go home after work. I’m still trying to work, raise a 3 1/2 year old daughter, get to the point where I have energy to play with her, be a wife and not an exhausted shell, and keep up with my household duties. It’s tough to say the least.
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My husband and I have thought about selling our 2 story home and building a single story open floor plan. We started thinking about this early in my diagnosis (5 years ago) not really because of my Parkinson’s but because he realized he wanted a single story like I did but instead we bought our 2 story almost 11 years ago when we got married. Now that my Parkinson’s has progressed we have thought more about it, but I think I’m the only one thinking about it in terms of practical for the future and my Parkinson’s progression which I hope will slow down due to recent DBS surgery. I’m only 39…I have a 3 1/2 year old I want to enjoy and play with.