Fears of Parkinson’s Disease

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You are sitting across from the doctor. You don’t notice that his desk, newly waxed, is void of disorganization. Focused on the fact that you now have PD, fear begins to envelope every inch of your body. From head to toe, you sit frozen and numb.

What does that mean? Am I going to die? Should I make a will? Will I be able to keep working? What’s going to happen to me? Will I be a burden to others?

Fears are normal. Fears are a part of life, even if you were not just diagnosed with a chronic disease. Now, since we brought that up, let’s look at that aspect of the disease first.

Parkinson’s disease (PD) is not a terminal, but a chronic disease. The difference is that with a terminal disease, the patient is usually given an estimate of when they can expect to worsen or pass from the disease itself. A good reason to be thankful that PD is chronic and not terminal. With PD, however, you are dealing with a chronic disease. Yes, it is annoying, persistent, sometimes unrelentless, never-ending and can cause complications with other health issues, but it will not kill you.

So, take a deep breath as we face another fear… What does PD mean?

Parkinson’s Disease, put simply, means your brain doesn’t work the way it should, specifically in regards to producing dopamine, a chemical that is relevant if you want your muscles to mind you. Since it does not do what it should, a drug therapy treatment is set in motion to psyche out your brain into thinking it has what it takes to be normal. This will need adjusting every now and then, but so do our backs.

So, take another deep breath and let’s face another fear… Should you make a will?

Whether you have PD or not and are of an adult age and especially if you have a spouse and/or kids, definitely make a will. Don’t do it because you’ve just been told you have PD because we have already established you’re not going to die from this little monster. Do it because you love the ones your with. 

Another deep breath is in order as we move on… Should I quit working?

That depends on you and how you are doing. Every one is different. You may have stepped into the doctor’s office for any number of reasons. Maybe you’re exhausted and could not find a reason to explain the recent falls. The tremors? Speech had changed? Something else? If you are still capable and love your job, stay. Numerous PD’ers are still going strong at work while they fight this thing. Some find they are exhausted from both the disease and having to work, and they then do not have the energy needed to give to their family. Prioritize. Maybe the best thing is disability. That’s not a bad thing. It means you are taking care of yourself. However, be advised that the disability process can take time, so be patient and consider starting the paper process for SSI before you have to..

Aahhh… onto the next fear: What’s going to happen to me?

Everyone fights this little monster differently. Some deal with tremors as the predominant symptom. Others suffer with some degree of pain. Some are blessed with the inability to be heard or to smell (the sniffing kind of smell). There are other factors that can come into play, but the important thing is to find a neurologist who specializes in PD (a movement disorder specialist) and one whom you trust. He’ll work closely with you to find the best treatment for your individualized care and it will look different from everyone else with PD as PD is an individualized disease and has many faces. So, how to answer the question of what’s ahead? You take one day at a time. Do not stop exercising (or start excercising!) as it has been proven that staying active can lessen some of the symptoms and sometimes lessen the medications needed to fight the symptoms that are there.

Finally, the fear of being a burden…

What is a burden? A weighted load. A problem. A drain. That sounds like a terrible thing. Just because you now have PD, it does not make you a burden. You have not become a problem but now have the opportunity to reach out to others with a like condition and understand their plight and come alongside of them and be a friend, a help, a support.

You now have the opportunity to make others more aware of this little monster, because where once you barely knew what the letters PD meant, you know now much more and can speak from personal experience to bring attention to this disease in order to help find a cure.

You – a problem to others? A drain on their life? No. Unless you choose to be.

Keep your head up, keep smiling and if you weren’t the smiling type before, learn to do it now. Someone else needs you to come alongside of them when they walk out of that doctor’s office and you may be the only one that understands how they feel.

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.


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…

 

Parkinson’s Disease and Dementia, Part 1

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I had a reader ask the question: “Why is there never any commnets on Parkinson’s dementia? It is very real and 40% of Parkinson’s patients deal with it.”

So I began to look into it. And a simply answer to the question posed would be, “because I don’t want to think aobut that stuff.” It’s frightening, to say the least. To propose that this disease could dominate and take over my mind (different than that being my ‘brain’), amongst the other things it’s already taken, frightens me.

But it is a real possibility, no matter how frightening.

An estimated 50 to 80 percent of those with Parkinson’s eventually experience dementia as their disease progresses. The average time from onset of Parkinson’s to developing dementia is about 10 years.

It is believed that the two most common causes for dementia in older people are Alzheimer’s disease (a progressive mental deterioration that can occur in middle or old age, due to generalized degeneration of the brain. It is the most common cause of premature senility.) and another condiiton called vasular dementia, which is a condition that involves changes to the brain’s blood supply. However, Parkinson’s disease, an HIV infection, head injuries and Lewy body disease have also been known to caused an arise of dementia.

What complicates matters further is that in those having PD dementia, plaques and tangles are also present. Plaques: not the kind dentist removes from your teeth. Tanlges: not the kind you comb out of your hair. No, we’re talking serious stuff here. Plaques are deposits of a protein with a funny name that form around blood cells that have died. As they form through death, these little monsters begin to cling to one another and form clumps – plaques. The little monsters build up between good nerve cells, preventing them to send messages to each other properly.

Tangles are formed of of nerve cells known as tau protein that are either on their way or have made it to death row. They bunch togehter, twisting (or tangling) around each other, forming tangles of nerve cell fibres. While tangling up the paralles stands of tau protein nerve cells, they fall apart, disintegrate and destroy the cells’ irreplaceable communication system.

While all this is going on unawares to the patient, the plaques and the tangles quietly continue to gather inside of the brain, causing other nice and healthy nerve cells to eventually wither away and die a silent death and the area of the brain in which these little monsters had their fun fest shrinks.

If a person with Parkinson’s disease also has these so-called plaques and tangles, this complicates things, as these are the hallmark brain changes that have been found linked to Alzheimer’s disease.

I told you we didn’t want to think about this stuff. But, it’s real. It’s a part of Parkinson’s disease that we need to be aware of, not so that we can try not to think about it, but so that we are able to receive treatment sooner than later, hopefully to postpone some of dementia’s ugly symptoms.

More tomorrow…

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