Shannan

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…[Read more]

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.

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 daugh…[Read more]

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.

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…[Read more]

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 g…[Read more]

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 ti…[Read more]

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.…[Read more]