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The new oath: hear no evil, see no evil, speak no evil

I had yet another disappointing (to say the least) doctors appointment today. He asks me how I’m doing. I tell him the truth. All in all, pretty shitty, just to sum it up for you. He asks what my main concerns are and what I would like “us” to work on first and foremost. I want “us” to work on the two things that effect my quality of life most, pain and lack of sleep.

He even asked my husband what the top priorities would be. My husband; who I brought with me as an advocate, my caretaker, and also the best witness to what my life is like on a daily basis; states that getting my pain under control would improve the other areas of difficulty I am having with this damned disease. Less pain = more sleep, a better appetite, more motivation which leads to more exercise, and an overall better feeling of well being.

BUT… Ol’ Doc, avoids talking about my pain or treating it. He avoids the subject all together. Prescribes me some sleeping pills, as if the klonopin, and flexeril, I take nightly weren’t depressant enough to get the job done. What is it going to take to make these doctors understand that it doesn’t matter how many depressant medications they prescribe me. My insomnia, and fatigue are being caused by PAIN. Pain will keep you awake through some of the most extreme circumstances you could dream up, if you could sleep that is. I’m sorry but it is hard to relax, and fall asleep when you feel as if your whole body is being torn asunder.His obvious uneasiness, and blatant avoidance of the subject of my pain, made it painfully obvious that he is never going  to help me. To him PAIN is a four letter word.

Right now, with the physical and psychological pain I am feeling, I have a few more four letter words for the medical community.

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a | Writer’s cramp. Abnormal clenching of fingers occurs selectively during writing; patient is otherwise normal. b | Fixed dystonic foot posture. c | Dystonia of arm, neck and face, exacerbated during writing. Patient first developed writer’s cramp, but subsequently developed dystonia of the neck (torticollis) and face. d | Involuntary dystonic flexion of trunk and extension of neck (retrocollis) during gait.

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

THE BASICS….Dystonia. Limb dystonia is a cramping and “posturing” of mus­cles. This complication occurs in up to 43 percent of people with young-onset Parkinson’s disease, compared to only 4 percent of people with traditional Parkinson’s disease. Dystonia can become one of the more debilitating aspects of this disease, causing pain and the inability to function normally.

WE ARE TALKING FOOT DYSTONIA. My dystonia has generalized but I have it BAD in my feet. Here is what I have found to kick foot dystonia in the butt. I bought a pair of HARD SOLED slippers 1 size too big. I took 2 cheap pillow cases and cut them to just a little bigger than the slipper. I put a 1/4 inch of plain white rice in the saved (slipper size) bottom part of the pillow case and sewed up the open end. I put the rice pillow bags I made in the microwave for a minute or two, put them in the slippers and stick my feet in (make sure you wear socks). Instant relief, and you can do this as many times as you have to. BONUS: You can wear them outside too, because of the hard soles. : ) Let me know if anyone else tries this, and what your personal experience with it is.

Now, if I could find such simple solutions for the other dystonias and pain issues that effect my quality of life.

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89% of people with Parkinson’s eventually experience vocal dysfunction. These could be any or all of the following; soft voice (loss of volume), monotonousness (uniform pitch and intensity), breathiness (audible excessive emission of breath while speaking) , hoarseness (harsh or rough sounding)  poor voice quality, and inadequate articulation. Those seem to be the major issues associated with speech.

Through the endless hours of reading everything I can find about Young Onset Parkinson’s Disease (which I still do, almost religiously) I stumbled upon an article that made a rather compelling case for using singing as a speech rehabilitation and preventative tool. I figured, hey I like to sing around the house cleaning, or in my vehicle. Oh, don’t judge, you do it too. My next thought was that I need to do it in a forum that would command more voluntary, controlled, and purposeful sounds to escape my mouth in the form of song. Not just your usual fooling around in the shower concert. What better way to make yourself hit certain notes, keys, and octaves than singing in front of a bunch of strangers.

So, I volunteered my friend Joe (names are always changed to protect everyone’s privacy) to go to a local tavern, where it happened to be karaoke night. Joe loves to sing karaoke, and happens to be a singer in a band. Forgetting that I, on the other hand, have always had an exorbitant, crippling, fear of standing there, front and center under a spotlight, and singing in front of countless strangers. I figured the best cure for this seemingly irrational fear…. exposure therapy.

I had been once before, and managed to mumble my way through a song that I’ve had sung to me since I was born, and singing myself since I was old enough to talk. What pray tell could this impossible to screw up song be. Well, the song every American knows better than the National Anthem, American Pie by Don McLean, of course.Luckily there was only a total of five people in the bar that night to judge me. Believe me when I say that my paranoia had everyone voting me off the Island.

By the time Joe showed up, I had psyched myself up so much that there was no way I was gonna possibly suck ass tonight. Oh, I couldn’t have been more wrong. The first couple songs were a struggle to say the least, and I didn’t have the ego cushion of an empty bar tonight. Oh no, there were probably thirty people or so, but to me I might as well have been performing in the Hollywood Bowl. At this point I figured that everyone had already heard me massacre the first two songs, it wasn’t going to matter to them if I turned it into a mass murder across the music genre spectrum.

This was the turning point of my night. I started to not care, which was a huge triumph for me. Though, every time I put that microphone in my hand, my anxiety level, and my tremors, became almost unbearable despite having taken my Parkinson’s medications right before we left my house. By the time I arrived back home, I was elated, swelling with pride. I went, I sang, I sucked ass. But I did it. I overcame one of my biggest fears and didn’t have an aneurysm. Karaoke is now something that I am going to try to do on a more regular basis, for fun (hopefully) and, for my vocal health.

I saw my neurologist more than a month ago. He didn’t say as much, but in the midst of his attempt to talk his way around my questions, providing me with no real answers, I could tell that he didn’t have any, and that my “case” was beyond his level of expertise, and comfort for that matter. His solution! He referred me to the ONLY movement specialist within a 4 hour drive from here.  Great, I thought, someone who deals with these types of rare (at least to this state) conditions all the time. Someone, who won’t dance around my questions, who knows what needs to be done, and isn’t afraid to prescribe me whatever is going to help me. ME!!! Yeah, ME, I am a person, a fellow human being.  Sound too good to be true. It may be, considering that I’ve already hit my first catch. From the time of referral it will take 6 months to a year to get my first appointment.

I got some bad news yesterday. My physical therapist informed me that my insurance changed their coverage of my physical therapy, and that I only have 1 more visit allotted for this year.     My dystonia is “generalized” on my left (parky) side, and am also dealing with rigidity so bad that it has literally pulled my hip joint, shoulder joint, and sacrum out of their usual positions. Add the over-curvature of my spine, and extended periods of muscle spasms to the stiffness and bradykinesia, and let us just say, it’s hell on earth.

I was having a famously bad day with my Parkinson’s symptoms and excruciating pain yesterday. So, I called my doctor in tears and all he had to say to me was “once we get your Parkinson’s under control, you won’t be in pain anymore which should be a lot easier once you can get in with the movement specialist. JUST HANG IN THERE.” [Where I live, doctors won’t prescribe any pain medication unless you have surgery or you are literally on your death bed.] My many doctors have me on Requip, Artane, Naproxen, Flexeril, and Klonopin. The Flexeril and Klonopin are supposed to help with my dystonia, muscle spasms, and pain, but I might as well be taking a multi-vitamin. That is how effective they are. My physical therapist suggested that I should have my doctor switch me to Soma (another muscle relaxer but not a narcotic), because other PD patients have had some relief with it. I asked my doctor and he said NO… because “when it breaks down in the brain, IT MAY HAVE ADDICTIVE QUALITIES … FOR SOME PEOPLE”. Really!?! For SOME people it MAY have addictive qualities… that is your excuse for not prescribing me something that may help alleviate some pain and discomfort.

I have days that are so bad that I can’t button my own pants, or that I am so stiff, and in so much pain that I can barely get out of bed. I need help just to get up to use the bathroom. This is no kind of life right now, and no one seems to want to help me. It isn’t as if I go to the ER every other day complaining of a headache or sore back, just to get a fix. I have a legitimate disease, with a legitimate diagnosis, and legitimate complaints. I am so sick of not being heard, and being treated like a drug addict. I am feeling so disenfranchised, and marginalized by the whole medical community, that I am getting depressed and desperate.


WHAT IS YOUNG ONSET PARKINSON’S DISEASE (YOPD)?

When someone who is 21-40 years old receives a diagnosis of Parkinson’s disease, it is referred to as “young onset” Parkinson’s disease. Although most symptoms are the same at whatever age PD develops, managing the disease can be particularly challenging for a younger person and the person’s family   medically, psychologically and socially.

WHAT ARE THE PRIMARY MOTOR SYMPTOMS OF PARKINSON’S DISEASE?

  • Tremor (when limb is at rest)
  • Bradykinesia (slowness)
  • Rigidity (stiffness)
  • Postural instability (balance problems)

It is important to know that not all of these symptoms must be present for a diagnosis of Parkinson’s disease to be considered. In fact, younger people may only notice one or two of these motor symptoms, especially in the early stages of the disease. Finally, not everyone with PD has a tremor, nor is a tremor proof positive of Parkinson’s. If you suspect PD, see a neurologist or movement disorders specialist.

OTHER POTENTIAL MOTOR SYMPTOMS

The cardinal signs listed above often contribute to an overall muscle rigidity and/or slowness, which can present in different people in different ways and may include:

  • Decreased arm swing when walking
  • Dystonia: unusual and painful muscle contractions in the foot, ankle, shoulder (may lead physician to consider conditions such as bursitis or carpel tunnel, especially in a younger person)
  • Fatigue: a particularly difficult symptom for younger people who may be trying to juggle the demands of family, career, etc.
  • Masked face: restriction of facial expression causing person to look angry, depressed, or uninterested
  • Slow or soft speech: may be noticeable to friends or family but not to the person with PD
  • Decline in fine motor skills: difficulty with using utensils, buttoning clothes, etc.
  • Micrographia: small, cramped handwriting
  • Freezing: Temporary, involuntary inability to move

WHAT ARE SOME OF THE NON-MOTOR SYMPTOMS?

MOOD CHANGES

These are some of the most common non-motor symptoms of PD and may predate motor symptoms by several years. They are particularly challenging symptoms for young people and families because they can decrease or eliminate the motivation to seek or accept help.

COGNITIVE ISSUES

People with young onset PD may notice changes in the way they retain and/or process information. Many young people report they are unable to manage as many tasks simultaneously as they once were. Changes in cognition often set off alarm bells; however, memory problems are not necessarily equated with dementia. Cognitive issues related to PD may include:

  • Executive functioning (i.e., difficulty multi-tasking)
  • Slowed cognitive speed
  • Memory
  • Dementia

BEHAVIORAL CHANGES

These symptoms often manifest as obsessive-compulsive behavior such as excessive shopping, gambling, hyper-sexuality, or binge eating. It is important for the person with Parkinson’s and the family to be aware of these potential symptoms as they can have devastating consequences. If behavior changes like these should occur, the physician should be notified.

SLEEP DIFFICULTIES

Some experts estimate that as many as 90% of people with PD have experienced some form of sleep disorder. In some cases, these predate motor symptoms by a number of years. Parkinson’s medications can cause sleeping difficulties (either too much or too little) as can the disease itself. Inadequate sleep can exacerbate symptoms such as fatigue, anxiety, or cognitive difficulties; the very symptoms younger people need to control in order to continue working and/or taking care of a home and children.

AUTONOMIC NERVOUS SYSTEM DYSFUNCTION

An interruption in the automatic regulation of involuntary body processes can result in a variety of symptoms:

  • Constipation and/or urinary frequency: these should be taken seriously and can usually be treated effectively.
  • Blood pressure changes: usually dizziness upon standing
  • Temperature regulation: feeling very cold or warm, despite normal room temperature; excessive sweating
  • Sexual dysfunction

NEURO-OPTHALMOLOGICAL

Neurological changes can produce ophthalmologic abnormalities such as:

  • Double vision and/or blurry vision
  • Decreased blink rate
  • Irritation of the eye surface/difficulties opening the eye-lids

SENSORY PROBLEMS

It is not uncommon for people with Parkinson’s disease to experience sensations such as:

  • Numbness
  • Tingling
  • Burning
  • Pain

 

The information above came from, and more information is available at: http://www.youngparkinsons.org .

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