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

 

Dealing with Stinky Stuff

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I’ve been struggling with writing for PJ lately. I keep asking myself why and this week it has become clearer. I live so close to this disease that sometimes it’s hard to write about it and live through (what it seems like) issues surrounding – twice. If everyone felt like that, there’d be no one to help us through our struggles that have been there before us on those difficult paths. I am listening to KLOVE (a Christian radio station) this morning, and I think I may have been released from the funk I have been in.
 

The other day I was talking with someone who was telling me I have a gift of encouraging others. I don’t see myself like that but I’m glad that some people may feel encouraged and not discouraged when they are with me! There was a time when I honestly believed I was nothing but a discouragement to others. What waste of our lives to believe such lies. So… I was talking to this woman and thought to myself, I do believe God has gifted me to write and He did allow this stinkin’ disease to overcome my physical being and so I must write – sometimes – about stinky stuff, in the hopes of encouraging others.
So I am sitting here listening to KLOVE and a song by Josh Wilson comes on. Now, I’ve heard it several times before but never listened to it as intently as this morning. Sometimes we get locked in a dark pit of despair when something has been taken from us, (be it health, employment, a spouse, a loved one) having convinced ourselves  that we have nothing to offer . We convince ourselves we have no reason to keep trying. After all, with our great losses, we are less now. Oh, how so not true, because the opposite has actually occured.  We are actually more! So much more. Because of the losses we (can) have so much more compassion. So much more empathy and we can have so much more grace. We listen better because we have a greater understanding. We are just one, but we are a brighter one because our light has been fueled by loss. In our worldly understanding we feel we can no longer make a difference because of our losses, but we have a God who makes more from our less
 

In Josh Wilson’s song, Keep On Pusing Back the Dark, there is a line that says, “Whatever you do, just don’t look back.” When someone has a chronic illness (stinky stuff), they may wonder, “What does that mean for me?” 

When we our focused on our diagnosis, we are looking back. We are despairing, grieving, losing. We cannot win a race looking backwards. We cannot win a race by going back to the starting point over an over again. When we find ourselves at the starting line – the diagnosis – in order to win the race we have been assigned, we MUST move forward in order to win.

How do you move forward when the stink is overwhelming? How do you win?

That will look different for everyone, but Josh (yes, we’re on a first name basis now) generalizes how that works: “Don’t underestimate the God you follow. Don’t lose heart and keep pushing back the dark.”

We must take an active part if this stinkin’ fight:

KNOW who God is – His mercy, His power, His grace. No matter what comes we must keep trusting, believing, and not lose heart. We must not stop pushing back the dark and that only happens by moving ahead because, as we move ahead, the dark gets further away.

All races are not won by running as fast and furiously as our bodies will perform for us, but by being intentional, persevering, not giving up.  And some races are not against others – of a competitive nature – but against ourselves. The race against a chronic disease is fought one patient at a time, giving his experience – his expertise – to those not so quite as far in the race so that they are able to run their best as well.  Or, advice, experience, and/or expertise can be given to the coaches (the doctors, the researchers, the advocates) to help them know how to coach best. In other words, this race against PD isn’t just a one man event, but will take a team of encouragers to get us across that line.

And that’s what we need to be in our race. Encouragers. Sometimes we will cheer others on with tearful understanding. Sometimes with much needed humor. Sometimes with a firm and righteous anger when we see someone who’s giving up. Someone who helps another to push back the dark. 

 

As I sit here, finishing up this article, another song comes over the air by Building 429. It is aptly titled (for PD patients) “We Won’t Be Shaken.”

“…I know You go before me and I am not alone.

This mountain rises higher, the way seems so unclear

But I know that You go with me so I will never fear

I will trust in You, whatever will come [my] way
Through fire or pouring rain
No we won’t be shaken
Whatever tomorrow brings
Together we’ll rise and sing
That we won’t be shaken
No we won’t be shaken.”


I am not shaken. I know who goes before me in this sometimes  stinky journey I have been put on. I am not alone and when my mountains seem to rise high and the way unclear, I know who goes with me. I am not shaken. 

I am encouraged. Thanks KLOVE. Thanks God.


Random Health Facts

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I can’t remember where I  saw this compilation of health facts, but I thought they were kinda interesting. And as an added bonus, I’ve included my helpful advice.

  • When you walk uphill, the level of harmful fats in the bloodstream goes down. When you walk downhill, blood sugar levels are reduced. Alter your patterns of exercise depending on your health needs! My suggestion: Walk down the hill you walked up or walk up the hill you walked down!
  • If you take chewable Vitamin C tablets, make sure you brush your teeth afterwards, or at least rinse your mouth out. The tablets make your mouth acidic enough to start dissolving tooth enamel.  My suggestion: Drink lots of orange juice. Then you get the vitamin C while you rinse your mouth. 
  • Licking a wound actually does promote healing. Saliva helps disinfect wounds and kills bacteria. My suggestion: I really don’t promote licking your wounds. At least not in public.
  • Even though the average life expectancy in Japan, France and other countries is longer than the United States, if you reach age 80, statistically you have a greater chance of living longer in the United States. My suggestion: Be thankful if you make it to 80.
  • Do you know why eyes often turn red in a photograph? Blood. Really. The little black dot in the middle of your eye is not black. It’s clear. It only looks black because there’s no light coming from behind it for illumination. However, when a flash goes off, the light enters the eye and reflects off of what it finds. It finds blood vessels, blood is red, and that’s what reflects. My suggestion:  For your next family portrait, if you wish to minimize that ‘red-eye’ effect that can often occur, have everyone wear sunglasses.
  • Alcohol can be a double whammy for hip fractures in older people; not only does excessive drinking increase the risk of falls, but it also decreases bone density. My suggestion: Don’t drink and move.
  • Chocolate may be a more effective cough remedy than cough medicine, according to a study at Imperial College London. My suggestion: Because most people cough at least once during the day, whether due to a tickle in their throat, choking, a virus, etc., be sure to eat chocolate each day, several times a day.
  • Though it has lots of calcium, yogurt contains no vitamin D. Milk is fortified with D, and is the major dietary source of it, but the milk that yogurt is made from isn’t fortified. Vitamin D helps the body utilize calcium and build bone. My suggestion: Drink more milk. Add chocolate syrup so you don’t choke while guzzling it down (refer to prior health fact for clarification). Adding Oreos to the mix will increase the benefits.
  • Both green and black tea have enough flouride to fight tooth decay. Some studies show that tea, if you drink it daily over a lifetime, may also prevent heart disease and cancer. My suggestion: Make sure to start your youngsters early on learning to have their spot of tea in the afternoon. Don’t forget the scones.
  • To choose the best oranges, make sure it feels heavy for its size. That usually means more juice and more flavor. My suggestion: If you’ve decided to heed this navel advice, wear a bib.
  • Ounce for ounce, green peppers have three times more Vitamin C than oranges. My suggestion: Puree the green peppers to make pepper juice. Much like orange juice but green and much thicker, and – it will give you your needed Vitamin C while rinsing your mouth to prevent losing enamel. 
Journeying with you – 

Sherri

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

Parkinson’s Disease and Dementia, Part 2

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Although Parkinson’s disease is widely known as a movement disorder, people are becoming well aware that it can (and does) include dementia along with its already too long list of symptoms that develop as the disease progresses. More commonly associated with tremors and rigidity, dystonia and more, people with Parkinson’s have a six times greater risk of developing dementia than others.

Dementia is described as a significant loss in brain function, and can include memory issues, a slowing down of one’s thought processes, concentration diifficulties, apathy, and hallucinations. It also tends to be less common in the initial stages of early onset Parkinson’s (you get to have it longer but at least you may not have to deal with the dementia aspect as soon). However, as you gain birthdays, your chances of dementia gaining ground increases. So, stop having birthdays.

There are two types of dementia the Parkinson’s patient looks at (why bother with more – two’s already two too many) – Parkinson’s dementia and dementia with Lewy bodies.
If a patient with PD develops dementia at least a year after the onset of motor symptoms that are related to PD, this is known as Parkinson’s dementia. If symptoms of dementia appear before or at the same time as Parkinson’s symptoms, this is known at Lewy body dementia. Much like Parkinson’s disease, symptoms vary from patient to patient according to variables present.

Those who go on to develop dementia in PD, in addition to motor problems, have a greater deterioration in their attention, an inability to judge the environment around them, and struggle with their ability to be flexible. Their memory problems, however, are not as severe as those found in people with Alzheimer’s disease.

Though those with dementia and having Parkinson’s disease may not endure the severity of memory issues as those of an Alzheimer’s patient, they do have to deal with changes in their attention span, cognition (the activities of thinking, understanding, learning, and remembering) and their ability/inability to carry out tasks. They also frequently deal with having hallucinations and sleep disturbances.

Having symptoms of mild cognitive impairment (MCI) in/with Parkinson’s disease is not uncommon and it is estimated that one-quarter to one-third of people (some research shows a whopping 50-60% but for now we’ll ignore those numbers as 40% tends to be high enough) with the disease have (or will have) MCI. Research also shows that 80% of patients who have had PD 20 years +, will have have developed dementia. Take into consideration that most people are diagnosed after the age of 65… Let’s not even go there for YOPD…

Most all patients with Parkinson’s disease have been concerned at one time or another as to whether or not they will develop dementia. Research has shown that MCI can help to identify early signs of demetia in people with PD, quickening the onset of treatment.

There is evidence that treatment with rivastigmine can greatly improve the symptoms of dementia for a period of time, controling the symptoms of dementia and having a positive effect on them. There are other meds available to control symptoms

In part one of Parkinson’s Disease and Dementia, we talked about those little monsters called ‘Lewy bodies’. It is believed that only a small minority of people with Parkinson’s do not have Lewy bodies. In early stages, they are mainly found in the middle part of the brain – also known as ‘middle brain’ in the Hobbit world. Later, the Lewy bodies spread to other areas of the brain, thus earning the name ‘little monsters’.

Come back tomorrow for part three of Parkinson’s Disease and Dementia where we’ll talk about the havoc those little monsters wreak called ‘hallucinations’. Shoud be boatloads of fun…

 

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