Bringing Awareness to Something You’d Just as Soon Forget

IMG_9077.JPG

  
Some  people think Parkinson’s disease is a movement disorder and they would be correct. Others would say it is a disease that affects more than movement and they would be right. Some say it starts with a tremor and that is likely. Some say it starts with stiffness and that is a possibility but did you know the first symptom that is often overlooked and undertreated is depression?

April is Parkinson’s Awareness month and with that comes a responsibility to make aware the effects of this disease to the community at large by those affected by it. If people wtih Parkinson’s disease (PD) or people who know someone with PD don’t bring an awareness to this debilitating disease, no one else will. If it’s not important to make known the importance of finding a cure with those affected by PD, it won’t be important to anyone else.

PD can take many forms. It can begin with depression, as stated above, include tremors, dystonia (a cramping and tightening of the fingers, feet, neck, and/or other parts of the body. The Parkinson’s patient can experience dyskenesia – involuntary flailing about movements. These are the signs/symptoms that most people generally associate this diease with, but that is becasuse these are the symptoms of having Parkinson’s that are visible. Other signs that are not as commonly known and have been associated with having Parkinson’s disease include losing the ability to smell, uncontrolled drooling, a softening of the voice, walking as if you are dragging your foot, a shuffled walk, tripping/falling, and more.

Parkinson’s disease is also known as an invisible diease becasuse there are many other symptoms that are found with having PD. Along with the visible signs, the invisible signs take just as strong a toll on the body, both physcially and mentally. These invisible signs can include severe back and neck pain, migraine-like headaches, a tightening of the muscles, a change in handwriting quality, an expressionless face, and also depression, as mentioned above. 

Someone can have all the symptoms associated with PD, some of the symptoms, and/or some sympotms can change or disappear. PD mimicks so many other diseases, such as Lupus and Multiple Sclerosis that it often makes it difficult to properly diagnose and often takes a neurologist who speciaizes in movement disorders to make a correct diagnosis. This is especially true with people who are experiencing symptoms at an age uncommon to those riddled with PD (the elderly).  This age group of people – those who are diagnosed under the age of 60 – are known as patients with Young Onset Parkinson’s disease (YOPD) and the number of those being diagnosed with YOPD is increasing daily. What was once known as an “old people’s disease” is becoming more common with those under the age of 50.

There are several organizations with resources readily available for the asking. These include the Michael J Fox Foundation (michaeljfox.org), the Natioinal Pakrinson’s Foundation (parkinson.org), and the American Parkinson’s Disease Association (apdaparkinson.org). In Oregon, the Parkinson’s Resources of Oregon (parkinsonsresources.org) is available to answer quesitons regarding PD and also has much informatioin available to the public as well.

PD doesn’t play favorites. It does not take age into account, gender, or race. It can affect anyone, at any time. It can advance quickly or it can progress slowly. The cause and the cure is still unknown, which is why bringing awareness to this disease is so important. If I (now 55 and having had PD for 24 years) don’t think it important in bringing awareness to this debilitating disease, I can’t expect anyone else to think it important.

Journeying with you,

Sherri

Out of Control

orange_poppies.JPG
orange_poppies.JPG
drooling on my pillow
shuffling my feet
choking when i do
and when i don’t eat

shaking out of my control
my jaw, my lips, my face
all of them are quivering
i feel so out of place

i’m shaking on the outside
i’m shaking from within
i’m shaking all over
right out of my skin
 

toes that curl and cramp
fingers that stiffen and bend
is it in my future
to ever feel normal again

stiffness on the left
stiffness on the right
more cramping, more pain
every muscle – so tight

lots and lots
lots and lots of pain
pain masked, pain ignored
pain again and again

grief for things gained
grief for things lost
trying to live each day with joy
no matter what the cost

out of my control
i’m controlled by my brain
sometimes i feel so out of control
that i’ll go completely insane

depression vies for my attention
i push it back in its place
it beckons, mocks, screams my name
but i am not going to run its race

my speech is soft
my speech gets slurred
others often don’t hear and think
i haven’t said a word

mixed up, mixed up
out of my control
it might claim my body
but it will never break my spirit
or ever take my soul

 

Parkinson’s Disease and Dementia, Part 3: Hallucinations

Green_Dogwood.JPG

“Have you had any hallucinations?” A question most people with PD are asked at each appointment they’ve had with their neurologist.

I always think about my answer, as it always feels like a trap to see if I’m losing it mentally. You see, if I say yes, they may think I’m finally going over the top. I’ve lost it. And if I say no when I really mean yes, do I have to admit that the floaters in my eyes sometimes make me feel like a hummingbird just whizzed by? What to say, what to say…

  • Hallucination: something (such as an image, a sound, or a smell) that seems real but does not really exist and that is usually caused by mental illness or the effect of a drug
  • Delusion: : a belief that is not true : a false idea; a false idea or belief that is caused by mental illness
  • Illusion: a perception that is not true to reality, having been altered subjectively in some way in the mind of the perceiver.

Some people with Parkinson’s disease experience what are known as hallucinations or delusions, which unfortunately can be part of the dementia process. These false ‘eerienesses’ appearing as reality (otherwise known as F.E.A.A.R.), tend to be more prevalant in the later stages of the disease and are more commn in people who have had the disease for a long time.

Many variables exist for hallucinations to be present, but it can be caused by drugs given a person to treat their PD. The type of meds, the dosage, the person – it all comes into play.

When you see things that aren’t there – people, animals, crawly creepy things – these are hallucinations.

Hearing things like a door open or close can freak you out, especially if it didn’t happen. Someone is knocking so you go to answer the door and …no one is there. The phone rings and the same thing. These are hallucinations.

You are reading a book and someone is standing behind you. But are they – really? (You really don’t want to turn around to find out.) This is a hallucination.

You smell something burning and figure dinner must be ready. However, when you get to the kitchen, the cook is reading a book and nothing’s on the stove. You are disappointed. Perhaps relieved. Dinner still stands a chance.

An illusion is a form of a hallucination. You see real things differently from how they really look. For example, the monkeys on the wallpaper appear to be swinging from tree to tree. Or the lampstand may appear to be Uncle Jed. And, the carpet under your feet appears to be moving like the tide coming in at the ocean. (What a nice thought – to be at the beach.)

In all seriousness, hallucinations (or FEAR) can be quite disturbing, causing much fear and anxiety. There are, however, things that can be done, as with those suffering with delusions.

Delusions are conjured up by thoughts and beliefs that aren’t really there, whereas we learned that hallucinations deal more with the senses. Delusions can include paranoia (no, there are NOT cameras in all the trees), jealousy (no, your 83 year old husband is not having an affair with the 19 year old who lived next door eons ago), and exaggeration (no you are NOT superman).

Hallucinations, illusions, delusions – all scarey stuff. Both for the patient and the caregiver. They can cause problems in relationships. They can leave the patient feeling confused, helpless, misunderstood.

HELP!!!

Get medical care/advice and rule out other causes. Get treated, if possible. Don’t count on someone else telling you that you’re hallucinating. They may be delusional. Safety could be an issue so make sure to hide the bats from both the weary caregiver and the wild patient.

It may not be PD that’s the culprit of your hallucinations. An infection that leads to a fever, or somethng else may be to blame for this one. Hopefully.

But then again, maybe hopefully not.

Journeying with you,

Sherri

More Info on New PD Drug

AbbVie Announces U.S. FDA Approval of DUOPA™ (carbidopa and levodopa) Enteral Suspension for the Treatment of Motor Fluctuations in Patients with Advanced Parkinson’s Disease

· DUOPA is the first and only treatment providing 16 continuous hours of carbidopa and levodopa for motor fluctuations in advanced Parkinson’s disease

· In a clinical trial, patients treated with DUOPA experienced significantly greater improvement in “off” time than patients treated with oral carbidopa-levodopa immediate release tablets

NORTH CHICAGO, Ill. January 12, 2015 – The U.S. Food and Drug Administration (FDA) has approved AbbVie’s (NYSE: ABBV) DUOPA™ (carbidopa and levodopa) enteral suspension for the treatment of motor fluctuations for people with advanced Parkinson’s disease. DUOPA is administered using a small, portable infusion pump that delivers carbidopa and levodopa directly into the small intestine for 16 continuous hours via a procedurally-placed tube.

DUOPA was approved by the FDA as an orphan drug, a designation granted to products intended for the treatment of rare diseases or conditions affecting fewer than 200,000 patients in the U.S.

“There is unmet need for treatment options for patients with advanced Parkinson’s disease. As the disease advances, it can be difficult to control motor features,” said C. Warren Olanow, M.D., Professor, Department of Neurology and Department of Neuroscience, Mount Sinai School of Medicine, and lead investigator of the DUOPA pivotal trial. “In clinical trials, DUOPA was shown to significantly reduce the amount of off time advanced Parkinson’s disease patients experienced.”

In the advanced stages of Parkinson’s disease, patients may begin to experience “off” time, or periods of poor mobility, slowness and stiffness. Additionally, in Parkinson’s disease patients, the spontaneous emptying of the stomach becomes delayed and unpredictable, which can affect the timing of when orally administered medicines leave the stomach and are absorbed in the small intestine. DUOPA provides patients with the same active ingredients as orally-administered carbidopa and levodopa immediate release, but is delivered in a suspension that goes directly into the small intestine via a tube placed by a percutaneous endoscopic gastrostomy procedure with jejunal extension (PEG-J). This type of administration is intended to bypass the stomach.

“The FDA approval of DUOPA is another significant milestone for AbbVie’s pipeline,” said Michael Severino, M.D., Executive Vice President, Research and Development and Chief Scientific Officer, AbbVie. “This advancement is important for patients with advanced Parkinson’s disease and their care teams, as it provides a new therapeutic option to help manage motor symptoms.”

“Due to the progressive nature of Parkinson’s disease, it can be difficult to treat over time, especially in the advanced stages,” said Joyce Oberdorf, President and CEO, National Parkinson Foundation. “Our organization is encouraged by the introduction of a new therapy that may provide another treatment option for affected patients and families.”

Related Posts Plugin for WordPress, Blogger...