A condition which can coexist with Parkinson’s disease (or even mimic Parkinsonism resulting in misdiagnosis) is that of dystonia.  Dystonia is a condition marked by involuntary muscle contractions.  These can be localized to a certain part of the body (neck or shoulders, arms, etc.) or can be generalized or occur in several areas.

Coexisting with having stiffness, rigidity, balance issues, and other issues which appeared before my tremor, I also would have what I thought were unexplained muscle cramps – sometimes during exercising, but also just walking or even while in bed at night (which occur in the middle of the night in my neck, legs, and at least one if not both feet).  I remember a few years before my PD diagnosis that I had pain in my feet, which was diagnosed back then as being plantar fasciitis – not sure if that was connected.

At the time of my diagnosis, I was having neck stiffness, combined with episodes of my neck jerking and pulling suddenly, and a lack of range of motion (along with pain), which continues to make my life miserable along with: leg cramps at night and early morning, foot cramps, random back cramps, muscle aches, and various other sources of cramping and pain.  On any given day, I was (and often still am) stiff and soar in some part of my body or another.  I get so used to the aches, cramps, and pain that I typically often try to ignore the pain, unless it really flares up.

Many people who might have heard of dystonia mistakingly think of it as being limited to the hereditary form of the condition which typically appears during youth, in which body limbs will twist up creating abnormal postures, preventing in movement and possibly resulting in death.  However, in the case of Parkinson’s Disease, the dystonia may appear along with or right before other Parkinson’s symptoms.  Many with PD describe it more as a tightening and directional pulling and less of as a twisting (although many have their feet twist or toes curl under – or maybe a toe or two may flare out).

Both Parkinson’s and dystonia originate in the basal ganglia part of the brain.

In my case, dystonia contributes to an awful night of sleep (or lack thereof).  It also can sneak up and make walking difficult – and at the most inconvenient times.  Following an arm tremor, it can make my arm ache for a long time afterward.

Often my levadopa/carbidopa medication helps, but when it wears off – the absence of medication in my system may be a contributor to bringing about a worsening of dystonic episodes.

Dystonia is one of those things that makes my Parkinson’s Disease as not being all the fun and games that it is cracked up to be (this comment is directed to all who have made remarks about Parkinson’s Disease not really warranting disability, not ever causing pain, including those out there who minimize my struggles by making comments such as “you look fine – you just have a tremor and some stiffness – big deal!”).

Maybe PD isn’t the worst disease to have, but it is still a major problem, especially when you recognize your lifetime dreams are changed – and when you recognize that you have lost the ability to do things that you once enjoyed (including sleeping well).   Keep on!