Day 21: Parkinson’s Disease and Dementia, Part 1

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…

Day 20: Are you aware? Really AWARE?

What does it mean to be made aware? Really aware of something?

Okay, so you know about something. Someone made you aware either by telling you, you read about it, or you saw something about it. Perhaps someone shared their knowlege with you. Or they wrote about it or made a movie or documentary about it. Somehow, some way, some where, you found out about Parkinson’s disease. Or Alzheimers. Or the Little Mermaid. Or haircuts, first kisses, Barbies, or flip-flops. 

You became watchful about whatever became interesting or important to you. Where once you never noticed, it now seemed like information or interest was booming. Like getting a new car. While you’re looking for a specific model, it seems you now notice that once elusive care everywhere. And yet, it’s always been there. You just never really noticed. Your conscious has a new target. You are awakened to something that had once been unnoticed. You’re on the watch.

Sometimes, though, we do know but we just don’t want to notice. If we don’t notice, we won’t have to do anything. We won’t have to deal with it. Things like go to the doctor. Or getting a haircut. Replacing a dripping faucet. Making a life-changing decision. 

Choosing to be aware is choosing to make a difference and if you choose to make a difference, you’ll have to do something. This is true in everything. Politics, church, health, etc. 

In terms of Parkinson’s disease, if you’re wanting to make a difference, start getting involved now. There are several avenues:

  • clinical trials for patients and non-patients; not all are invasive and many are just observing
  • support groups for patients and caregivers – don’t just be an observer – lead!
  • social get-togethers
  • exercise groups
  • write an article for a newspaper/magazine
  • join a network
  • ask a local/state/national organization what you specifcally might be able to do
  • become a dedicated advocate locally 
  • join a fund-raiser or start your own
Now, if you’re wondering how in the world I can post this on Easter Sunday…

Do you not know? Have you not heard? Has it not been declared to you from the beginning? Have you not understood from the foundations of the earth?  Isaiah 40:21,22

There was a cross. Someone stepped up onto that cross so you didn’t have to because all that stuff you’ve done wrong? All those times you said something hurtful? Someone had to suffer the consequences and so someone did. But, maybe you weren’t aware of that. Maybe you didn’t want to be. 

Maybe you think what’s done is past. And it is. But maybe only to you. Maybe the person you betrayed still bleeds. Maybe the lie you told still lingers. Maybe the guilt you feel has dissipated but the repercussions from the act that caused your guilt have caused resentment, retaliation, remorse.

There was a cross where now a door now stands and someone is standing just on the other side, knocking. Are you aware? Have you heard it? Do you not know who is standing there? Do you not understand?

If you are aware, you must make a choice and whatever choice you make, will make a difference. 

You can choose to open that door and accept the good news that no matter what you’ve done has been paid for because of the One who will be standing, who is waiting on the other side. The One who will walk with you into, through, and out of any valley you ever have or will have to face. Maybe it’s Parkinson’s disease. Maybe it’s grieving over a lost loved one. An affair. A divorce. Unemployment. Loss of medical benefits. The list could go on. And on. And on. And it does. And sometimes we think we can handle it and soemtimes we know we can’t.

And so we try to run and the door flies open at our request and there He is. And we have a choice to make.

And it will make a difference.

We can push Him aside, spit on the cross and deny our need for Him. Or, we can embrace Him, see that He’s who He said He was (and still is), be forgiven and set free and find that which we’ve been missing.

Either way, there will be a difference.

Which will you choose? Live in chains? or be set free?

He’s knocking…

Happy Easter. He is risen. Indeed.

Day 19: It’s Not All Parkinson’s Fault

dyskenesia.JPG

 

 

Here something most people without PD don’t realize…

The time for a cure is

 

not tomorrow, not next week, not in the future, but 

Leonardo daVinci said, 

“I have been impressed with the urgency of doing. 

Knowing is not enough; 

we must apply. 

Being willing is not enough; 

we must do.”


So I ask you…


Time could be running out…

Help to find a cure for Parkinson’s disease.

©parkinsonsjourney.com

 

Day 18: I Don’t Feel Like It

I told a friend last night that I feel disconnected. Disconnected from the PD ‘loop’, ‘circle’, whatever. If you’re involved with a Facebook PD ‘group’, you know that there is a growing force of people trying to make a difference in finding a cure for Parkinson’s disease. They are trying to get people to step out of their comfort zones (for some) and get involved in fund-raising and bringing awareness to this debilitating disease.

However, I feel disconnected. Or perhaps a better word for it is… apathetic. Not intentionally. Not purposefully. Not willingly. I just do. And then I read this in the newest issue of the Northwest Parkinson’s Disease Foundation newsletter:

Barchester, UK – Apathy among people with Parkinson’s disease is a sign that the condition is getting worse, claims a new scientific study.

A new scientific study suggests that apathy shown by a person with Parkinson’s disease is a sign that the condition is worsening.

Research published in the Journal of Neurology, Neurosurgery and Psychiatry suggest that apathy can be caused by changes in the brain resulting from the condition, Parkinson’s UK reports.

The Norwegian study followed a group of 79 people diagnosed with Parkinson’s disease over a four-year period.

Commenting on the findings, Parkinson’s UK’s director of research Dr Kieron Breen said: “This is an important study that helps increase our knowledge and understanding of one of the common non-movement related symptoms of Parkinson’s.”

 

He went on to say that the charity’s own research had found apathy to be a common symptom, while understanding why people with the condition may be apathetic may help carers.

One in every 500 people in the UK has Parkinson’s disease, equating to around 120,000 people living with the condition, according to Parkinson’s UK.

So, perhaps my apathy is grounded. I surely hope not. Not now, not ever. I want to run this race in life well. I want to get to the end and know I did what I could with the opportunities I had and not look back with regrets. I want to be an encouragement to others and not a source of discouragement. But – sometimes we get too busy comparing our walk with others along the way. We feel inadequate if we aren’t doing what others are doing or prodding us to do. And that’s okay. Sometimes it’s not our turn to run. Sometimes it’s okay to walk and take your time. If we were all running at once, people would be getting shoved off the trail, knocked down and trampled on.

Maybe you’re discouraged today because you feel like you’re not doing enough to find a cure for PD or Alzheimer’s or Breast Cancer Research or MS or whatever it is you're fighting. Maybe it’s your turn to walk. Maybe it’s time to take a rest on the bench and give/donate to someone who is more able to run this time around. Whatever it is – do something, no matter how small – even writing a note of encouragement to someone on the front lines right now, fighting for a cure. Just don’t let apathy take over and keep you on the bench.

 

Day 17: Who Are They?

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What do these four men have in common?

They may all love kittens.

They all have winsome smiles.

At least one loved to draw cartoons.

For certain – they all have (or had) PD.

 

Who are they?

From left to right, top to bottom:

Johnny Cash (diagnosis at age 67)

Billy Graham (diagnosis at age 72)

Charles Schulz (diagnosis at age 76)

Michael J. Fox (diagnosis at age 30)

 

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