A Metamorphosis Miracle

Metamorphosis.

The description of the life transformation of a hairy and/or squishy little caterpillar as he becomes a soft, beautiful butterfly.

The chrysalis stage of metamorphosis: the spunky, squashy little critter forms a cocoon and while hidden inside, undergoes miraculous changes in secret and emerges as that soft, beautiful butterfly.

The process:

Here he comes, little Clyde, a short, chunky, furry sort, lumbering along on the branch of transformation. He’s pretty tuckered out, having already shed his skin several times in his lifetime (depending on what kind of little guy he is), becoming stronger and stronger, bigger and bigger, macho-er and macho-er with each turn he makes. A regular body builder among the caterpillar clan, his friends say.

Now, Clyde has an agenda. He has a job to do and eventually he finds the perfect spot for his work to begin. He doesn’t know how to explain why he’s about to do what he’s about to do, after all, we all know that caterpillar’s can’t talk. However, he just has this ‘feeling’ that he must find the perfect leaf on which to do what he knows he needs to do. And for Clyde, this truly is the first day of the rest of his life.

No more will he be trying to hide from inquisitive children who find him fascinating and hold him much too tight. No more will he barely miss the soles of heavy feet as he tries to lumber across the blazing hot sidewalks that burn his belly.

Yes – today is the beginning of a new life for Clyde because today Clyde is going to begin to be transformed.

As Clyde decides the large, green maple leaf tucked near the curve of a branch (beyond the reach of a curious child) is a rather cozy home, he makes himself comfortable. Quite talented, Clyde hangs upside down on the leaf and begins to spin himself into an amazing cocoon, his soft, silky abode for the next two weeks or so.

Now, Clyde the caterpillar isn’t aware of all the mumbo-jumbo it takes to explain such as what is happening with him, but now inside his comfy, cozy and protective 'cubby', known as the pupa or chrysalis – Clyde is going to transform into something amazing. This is sort of like a very long magic show.

Clyde will lose his stubby little legs and trade them in for two long, slender ones. His bulging biceps will somehow become delicate wings that will enable him to float and flitter about, taking him to unimaginable new heights among his familiar world. He will develop a long tongue that drinks of a flower’s nectar – a proboscis. He will scour for bright, showy flowers in which, while at one time in his past he used to merely chew them up, he will now partake of their fragrant juices. Two antennae from which he will use for smelling things will emerge from his head where before there were two microscopic 'smellers' instead.

***

It has been almost two weeks. The cocoon shakes. Clyde has awakened and is stretching. He has finished his work and is now ready to reappear.

He flexes his muscles. They have disappeared! He is soft and weak. Only by repeatedly beating his new-found wings will he become stronger. As he flaps and flutters those new-found wings in a flurry of excitement, his senses acclimatize themselves to the surroundings into which he has emerged and blood and oxygen begin to fill his system so that he is able to function properly. Clyde keeps at this ritual for about an hour, at which time he is then ready to leave his little little home and begin his new life.

 

What does all that have to do with Parkinson’s disease? Chronic and terminal illnesses?

A popular Christian recording artist, Steven Curtis Chapman, wrote a song with these words:


“And there’s more to this life, than living and dying

More than just trying to make it through the day.

More to this life, more than these eyes alone can see

And there’s more than this life alone can be.”

 

Truly, there is more to this life. But sometimes, you just don't feel like it.

Those who struggle with different aspects of having a chronic disease can often wonder what that ‘more’ is. Some days it’s all you can do to make it through this day and on to the next one. Maybe it’s the physical aspect – the slowing down, the falling, the intense pain, the shaking, the cane, the wheelchair. Maybe it’s the mental – the forgetfulness, the slurred speech, the effects of the medication on the other parts of our brain. Or maybe it’s the emotional – the ups and downs, the what-ifs, the fears.

There is more. While we flounder in our faith, we desperately hold onto hope, because we are desperate to hold on! We cling to and trust in a mighty God who keeps His promises.

  • Promises that we can claim for the constant companionship of One to walk with us. One who knows all too well what suffering is really about: Be strong and courageous. Do not be afraid or terrified because of them, for the LORD your God goes with you; he will never leave you nor forsake you.” Deuteronomy 31:6
  • Promises that claim His sovereignty in a chaotic world: For I know the plans I have for you,” declares the Lord, “plans to prosper you and not to harm you, plans to give you hope and a future.” Jeremiah 29:11
  • Promises that claim His strength in our weakness: “That is why, for Christ's sake, I delight in weaknesses… in difficulties. For when I am weak, then I am strong. 2 Corinthians 12:10

You see, it is in the waiting – in the chrysalis stages of living – where we are changed. In the pain and through it. In the heartache over having a disease. It is in this stage where we realize that when we are fragile, frail, weak, and weary – this is the place where we are made strong. It is the place where we don’t give up hope and we fight to live. We flap our wings and while we may not fly to new heights physically, we are renewed in our strength. We will soar on wings like eagles; we will run and not grow weary, walk and not be faint. (Isaiah 40:31)

When we start out in life, we are much like Clyde, just lumbering along, minding our own business and then bam! We kinda get squished. Someone delivers some bad news, a friend passes away, we’re told we have Parkinson’s disease or a loved one has Alzheimer’s, we lose our job…

Those places are the perfect places in which to wrap up in the Lord’s cocoon – in his protection – and rest in Him. When we stay close and allow Him to protect and cover us, He transforms us into something much, much more beautiful. The result is worth the wait, even if the twelve days turn into twelve months which could even turn into twelve years. Through the process, we can come out perfected if we will choose to trust during the transformation.

If you're reading this, I want to encourage you to not give up. To not give in. There really is more to this life than living and feeling as if you’re dying. You have a large part in the living. You may not believe it, you may not feel it – but you do. A very important part. As you walk through this time of ‘chrysalis-ness’, a time of transformation, of trusting Him to be there, to guide, to carry and hold you – just hang in there – like Clyde did. It won’t be long before this transformation is complete and you will have emerged a beautiful and strong new creation, flitting about with new wings. I know. I've seen it happen.

 

Psalm 23 for A Person with A Chronic Illness

I am your shepherd, walking with you, guiding and directing your steps.

You will not need anything that I won't be able to provide, for I will give you what is required to give your best in this battle against this disease.

I want you taking the time to lie down in beautiful, lush green pastures, resting in my care and my peace, simply because sometimes you’re just tired and you're so weary and you don’t take the rest that you desperately need.

I am restoring your soul and giving you the strength to endure through the tiredness, the weakness, and the pain you must live with for now. I will always be building you back up so that you may run the race before you with endurance (or most likely – the race you are walking!).

I am guiding you in the path of righteousness because of who I have said I am, for I know the the battle you fight often causes despair and I will not ever allow this path of disease to destroy you emotionally or mentally, but will use it for growing and perfecting you in Me and being an encouragement for others along the same or a similar journey.

Even though you often feel you are walking through the valley of the shadow of death – those valleys of grief over what was and what may never be and what often is now – do not fear! You need not ever be afraid of the uncertainties before you, because I am with you. I will not leave you ever.

My rod and My staff, these instruments of protection and safety, I use them to bring comfort and protection to you. They bring a peace that surpasses all understanding and displace the fears that vie for your well-being.

I am preparing a feast you, waiting for you to come and enjoy all I have for you, and together we will show this Little Monster who has the victory over this disease. Our disease. Remember, what you go through, I go through it with you.

I am anointing your head with oil; your cup is going to overflow! In the aches and the pains, even when it doesn't feel like it – I am blessing you! Remember when I said, 'Blessed are the poor in spirit?' Then remember also that the poor in spirit receive the my kingdom – and that's you! Remember when I said, 'Blessed are the ones that mourn?' I hear your cries, your sorrow, your loss and you will be comforted!

My goodness and love are following you around, each and every day of your life, even if that means the future I have planned for you may bring progression of your disease – still you will experience goodness and love.

The best news? You are going to dwell in My house forever – tremor free, pain free, stiffness free, with a clear mind and a new body.

What do you say, my child? Are you with me in this?

We are not given promises that life will be a bowl of cherries, but we are given an irrepressible hope in a God that cares and will walk with us through this valley – if we will just believe and trust Him.

Journeying with you ~ sherri

Book Review: I Forgot that I Remembered by Kevin T. Boekhoff

If you enjoy the wit and humor of author Patrick McManus, you are going to LOVE Kevin T. Boekhoff's book, “I Forgot to Remember”.

Filled with wit, wisdom, and humor, the reader begins on an adventure where Boekhoff takes him alongside while he carries out his day to day tasks, deals with the realities of living with a movement disorder, and life in general. He takes, what can be considered the bad part of life, and always seems to be able to find the best in it.

I can find many books amusing, a smile crossing my face every so often, but it is rare that one actually makes me laugh out loud. This one did. Several times. Boekhoff has a way with words and telling a story that brings light into the darkness.

Although written from the perspective of a patient with Parkinson's disease, this book could easily lend itself to being a great book for someone in need of a laugh, a lighthearted read, or just wanting to know what a person's daily life with PD really looks like.

Although filled with many personal anecdotes on life, it is also interwoven with the seriousness of having Parkinson's disease. And even though he shares moments that turn the laughter to tears, he doesn't keep you there, but shows once again, that you can find joy in life regardless of the circumstances you find yourself in.

5 stars; a must-read for anyone with any type of illness or just in need of a good laugh. 'Funnest' book I've read in a long while.

 

For more information on how to get your hands on this book, please contact Kevin through his website at http://www.kevintboekhoff.wordpress.com.

 

The Invisible Reality of Parkinson’s Disease

There's been many stories coming my way lately, regarding the made up scenarios of Parkinson's disease. What I mean is this – some are being told by their spouses or other caregivers that their imagining it all or it's all in their head (no pun intended). Some are going to the doctor, only to have the doctor (not a specialist in PD) tell them – the patient – that they're just going through a phase of depression and eventually, they'll get over it.

Let me tell you a tidbit of my story… At the age of 30 or so, I started having some things go wrong – healthwise. I was getting extremely tired. My eye began being weird. I suppose you could say that was the symptom that got me to the doctor. The eye doctor. Before my eye exam, I explained what was going on. My eye would burn terribly and hurt and then I was seeing these little 'fireball' type objects. I likened them to the fireballs in the Mario Brothers Nintendo games. During an eye exam, my eye doctor slid over to the light switch on his little black stool and flipped the lights on. Something he had never done before. “Has anyone in your family ever had MS?” My heart sank. “No.” At that response, he went down the hall and brought the ophthalmologist back with him. Off went the lights and the ophthalmologist examined my eye (the other doctor was an optometrist. The lights came back on again. “Your optic nerve is hemorrhaging. What your're seeing and is making your eye burn is blood.” According to the two doctors standing there, Multiple Sclerosis, Rheumatoid Arthritis, and Lupus can often begin with what was happening inside my eye. However, there was one other thing it could have possibly been and they immediately had me come back in the morning to have an MRI of my brain done, to make sure it wasn't a brain tumor pushing on my optic nerve. An MRI would also show if there was any build up of myelin on my brain – another symptom of MS. The MRI came back negative for a brain tumor but showed some slight myelin build up – a symptom of MS if the build had been greater. Eventually, they called it Lupus and treated me accordingly for it. Ten years later, I was diagnosed with Young Onset Parkinson's disease. The symptoms have been consistent with all I've read about PD. I think they got it right this time around. The point of me telling you 'my' story, is to show you that often times, certain diseases may ravage our bodies and never be seen with the naked eye. No one else could see my eye hemorrhaging and what was causing the awful burning I could feel (and see!). But it was real. And now I have PD, as do so many others who thought they were signing up for one thing, only to find out they were given another. A life of leisure gone wrong. What does PD look like? That all depends. First of all, it is different for everyone who has it. Some may shake uncontrollably – all the time – while others shake less but have terrible back and/or shoulder pain. Some can smell the slightest fragrance, while others bemoan the fact that their sense of smell has disappeared completely. Some sing to strengthen their disappearing voice, while others take speech lessons (or talk to themselves). Some have a difficult time with speech, walking, etc. However, most people don't and most likely won't 'see' this. You won't see the restless legs that keep them awake half the night, pacing the floor to get it to stop. You may miss seeing when your PD person falls and scratches up their forearms and elbows. You won't see them struggle while getting dressed because they want to try to do it themselves just one more time. You won't see how it becomes harder and harder to swallow their medications. The fact is, you won't see a lot symptoms common for PD or MS or Lupus, etc.k, even if they are visible, because you may not really understand the disease or know what to look for. But, the PD patient is fully aware of what is going on inside of them and no one believes them because they can't see it and think they're faking that they have the disease because they badly want attention.. May I ask a favor? Don't dispute what they are trying to tell you or are dealing with. To lose the support of a spouse who thinks you're merely putting on an act can be devastating to the one suffering. If you're in denial over what your spouse has been diagnosed with, seek out a support group for caregivers. Whatever you do, don't push their diagnosis away and pretend nothing's wrong. Believe them or they'll seek support somewhere else. Is that really what you want? And PD person, if you've got a doctor that doesn't believe what you're telling him, get a new doctor.

Dr. Okun’s Sort of Ten Secrets to A Happier Life

The other day I was able to view a webinar with Dr. Michael Okun, put on by the National Parkinson's Foundation and sponsored by Medtronic. Dr. Okun is the author of a recent publication (2013), 10 Secrets to A Happier Life, and is on staff at the University of Florida as the Administrative Director, Co-Director, Center for Movement Disorders and Neurorestoration Professor, Departments of Neurology, Neurosurgery, Neuroscience, Psychiatry and History. (Try to say that five times as fast as you can.)

I will try to recapture the highlights for those who missed it. After all, who doesn't want to know the secrets to a happier life? And, pray tell, why has Michael Okun been keeping them a secret? Inquiring minds are desperate to know. So, since he didn't say to keep them a secret, I'm telling everyone.

First of all, Dr. Okun made teh comment alluding to the Parkinson's patient being like the sun. He didn't say we send out warm fuzzies to all who enter our atmosphere, but he did say that basically, the patient is important and that everything should revolve around us. We are so special! Thank you, Dr. Okun. Now, when your caregiiver won't do as you ask, tell them Dr. Okun (and add his titles above so you really sound authoritative) said they are to make you the center of the universe and revolve around you. After all, in the solar system realm, you are top dog.

Dr. Okun spoke of hope and dreams in his talk, stating the importance of both by citing a quote by Lu Xun which, in part says, “…when many men pass one way, a road is made.” This gives hope in the realm of research, I think. He then went on to quote Jillian Lauren, author of Pretty, who said, “I look for a sign. Where to go next. You never know when you'll get one. Even the most faithless among us are waiting to be proven wrong.”

Isn't that true in this or any other disease? We keep looking, watching, hoping for a cure, a sign that the time is just around the corner because you never know who will find it. Or when. Or how. Or where. Even the faithless are waiting… and wanting.

The good doctor went on to say that PD isn't a single disease, like cancer, diabetes, Alzheimer's. It is a combination of many and varied symptoms that mimic so many other diseases. Depression, anxieties, sexual dysfunctions, bowel issues, dystonia, restless leg syndrom, tremors even. You can have one of those 'diseases mentioned and not have Parkinson's but to have Parkinson's means the likelihood of experiencing any or all of the other afrementioned diseases is very good. Many equivocate PD to Alzheimer's but they are not the same. “There is a different degenerative process,” Dr. Okun said.

So, at this point I'm wonderng to myself, Where is the happy part? This is sort of depressing. But, the good doctor came through.

“So you have PD. It's not like having some other diseases. Having PD is btter.”

Okay, I like that.

“Joshua Harris,” he quoted (which I found amusing, since he writes books on dating and such), “said, 'The right thing at the wrong time is the wrong thing.” Dr. Okun used this quote as a backdrop for the importance of takings your meds on time, every time and timing is critical. Dosages need to be precise also, he explained.

Dr. Okun talked about hospital stays and how they can be a dangerous place for PD patients. Medical staff are, more often than not, not educated about Parkinson's disease and don't realize how critical having our meds on time can be. He said that 3 out of 4 times, PD patients do not receive their meds on time. For some patients missing just one dose can put them in a tailspin, resulting in the staff trying to accomodate new symptoms they view as being out of control and so then give you something to calm you and the next thing you know, you might be standing at the pearly gates.

Okay, I'm exaggerating. Sort of. This scenario is not common, but it has happened. Chances are, those caring for you in the hospital aren't going to know of your aversion to Haldol, so it's up to you to educate them. When they ask if you're allergic to anything, now you know what to tell them… Haldol. “Be prepared to get the right treatment,” Dr. Okun said. In light of this, he mentioned the Be Aware in Care Kit, offered free just for asking, from the NPF for Parkinson's patients and/or their caregivers.

“Lack of activity destroys the good condition of every human being, while movement and methodical physical exercise save it and preserve it.” – Plato 380BC

This quote led to talking of exercise and its importance to patients. He said that “Excercise is like a drug. When movemente is involved, we get better. Movement is also like Miracle-Gro to the brain.” Now, I love to garden and know the benefits of this stuff. Better root system, healthier plants, plentiful and abundant fruit… now – who doesn't want those benefits? (Disclaimer: author nor Dr. Okun is responsible for the ingestion of Miracle-Gro by a patient.)

 

He also stated that there are no 'best' exercises for the patient but ones that get your heart rate up each day and cause you sweat are a good thing.

 

He spoke about DBS in that, it is electricity to the brain, causing tremors, stiffness, slowness to sometimes be alleviated and in some, eliminated (so I've heard). The purpose? To alleviate suffering. To enhance the 'off' times by offering stimulation. These reasons for DBS is what Okun uses when countering the debate as to whether DBS is ethical.

 

Yes. I guess that has come up. By people who don't have PD, would be my guess.

 

He went on to say that making the brain electric can be helpful. It isn't for all, but for some. He stated that one in five patients may benefit from this procedure. And, did you know that PD led the way with using DBS, helping other diseases to benefit from this act of drilling into your brain? I just want to thank the very first patients who said 'yes' to having this done.

 

It was suggested by the good doctor to ask questions at your doctor appointments like, “What is the latest research in PD? What is the evidence in (whatever the latest research is) being beneficial to me? Are there any new drugs for PD and are they something we should consider?”

 

He talked about pain in PD and how changing the dosage of your current intake of levodopa may be helpful. (Any feedback on this by someone who has been here, done this would be super appreciated!)

 

Dr. Okun had more to say and took some questions in a Q&A session immediately following, but my meds were wearing off and I can't read my notes. So, the big question? What, exactly, were the ten secrets, ?

 

I guess I'd have to say…

  1. You are the sun?
  2. Be hopeful?
  3. Take your meds on time?
  4. Be your own advocate, especially when it comes to hospital stays?
  5. See about becoming bionic?
  6. Ask questions?
  7. Check out how to reduce pain?
  8. I don't know
  9. I don't know
  10. I don't know

My suggestion? Get his book. I couldn't take notes fast enough and what I did catch I can barely read. Such is life with PD.

 

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