Out of Control

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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

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“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.”

Apathy in Parkinson’s Disease

Day 26 – Parkinson’s Disease Awareness Month continues…

I posted an infographic the other day about Parkinson’s disease. It didn’t have the non-motor symptoms listed on it and it was brought to my attention. For a list of non-motor symptoms, check this out. For today, I am going to focus on one non-motor symptom: apathy

Just what does apathy mean? Some say that the opposite of hate isn’t love, but apathy – an attitude of not caring. Miriam Webster defines it as showing little or no feeling or emotion. Spiritless. There’s little or no intereste or concern. You feel 

  • indifferent
  • complacent
  • disinterested
  • unconcerned
You are
  • lukewarm
  • aloof 
  • cold 
  • numb
  • unemootional
  • detached
  • unfeeling
  • insensitive
  • unattentive

Ever feel that way? I highlighted the word spiritless above, because I think that sums up the whole mess. 

Apathy can be pretty pathetic and discouraging when you come across it in someone. Most people who are apathetic cause you to feel frustrated by their seemingly sense of detachment and unfeeling attitude toward life. However, in a person wwith Parkinson’s disease, often beknownest to them what is truly happening, they don’t want to feel this way. They don’t want to feel numb, lifeless, spiritless

Some tend to believe that apathy and depression are one of the same. According to the Journal of Neuropsychiatry, “Apathy is defined as diminished motivation not attributable to decreased level of consciousness, cognitive impairment, or emotional distress. Depression involves considerable emotional distress, evidenced by tearfulness, sadness, anxiety, agitation, insomnia, anorexia, feelings of worthlessness and hopelessness, and recurrent thoughts of death.” In a study conducted several years ago, doctors concluded that in Parkinson’s disease, apathy is present, but depression is more consistent with the disease. So do we ignore the sometimes and shoot for the consistent? No. It all needs to be addressed. So where do you start?

I have struggled with both aspects of these two specific non-motor symptoms. Apathy has robbed me of time. Opportunities. So has depression. Whereas apathy has left me feeling unemotional and numb, depression has left me in darkness, despair and desperation. When they have coincided with one another, it has felt like a ticking time bomb in my head and spirit. It is a scarey place to be and it is real.

For me, part of thee apathetic feeling I had came from feeling like I didn’t know what to do next. Feeling stuck in those ‘off’ moments. Keeping a list of things I want to accomplish or need to accomplish, no matter how simple or mundane it may seem, helps to bring things back into focus. Here are some practical suggestions for those moments when you feel bound in the land of apathy (and they help for depression mode, too):

  • Get up, take a shower, get dressed. Don’t think about it. Don’t allow yourself to get distracted. Do it. Laying out your clothes the night before may sound childish, but who cares? It makes your life easier.
  • Get some exercise. Stretch. Walk. Go for a swim. If you can’t motivate yourself, ask someone to help you/keep you accountable. To pull you out of the house if they must, and drag you along until you’re going along because you now see just how good you feel.
  • Take your medications on time. This involves sorting them ahead of time and having them ready to pop in your mouth when you are taking a handful each time. When you’re feeling apathetic or depressed, it is easy to just forget it becasuse unscrewing five child-proof prescription bottle caps four times a day isn’t something you’re going to feel like doing and you’ll pay for it within the hour. 
  • When you have things you really shouldn’t put off, do the things you hate first. That will make accomplishing your goals easier.
  • Talk to a friend. Have someone pray with you and/or for you. Having another person to share life’s struggles makes the struggle bearable.
  • Talk to your doctor. There are treatments for apathy and depression for people with Parkinson’s disease who find themselves fighting to stay sane. This disease already takes enough from us. Don’t let it have your joy and happiness, too.

 

 

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