WHO DO YOU GO TO?

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I love lists. Grocery lits. Cleaning lists. To Do lists. I like checking things off on lists and feeling a sense of accompishment. If you search around my website, you’ll find lists: a list of books to read about Parkinson’s disease, a list of resources (websites, articles, etc), a list of blogs related to PD and more.

Today I am (hopefully with your help) going to start a list of doctors. Doctors who have earned the respect of the patients within the PD/Movement Disorder community. 

It can often be extremely difficult for people with movement disorders to find a doctor who can best treat them in regars to their disease and often end up driving many miles to see their doctor when a good one may be right in their own town. And, to someone just starting out seeking for a qualified doctor, one name isn’t any different than the next.

Do you have a neurologist/movement disorder specialist that you trust? Respect? One that takes you seriously and makes you feel as if you’re not just another number and you matter? Stays currrent with treatment options?

If so, would you ming helping me make another list? A list of doctors (I’m concentrating on the United States but will include other countries if they come in) who specialize in movement disorders.

Here’s what I’m looking for:

  • The name of the doctor you would recommend.
  • Their location 
  • The physician should be a neurologist/Movement Disorder Specialist
  • Should be taking new patients
  • Why you recommend them (optional)
If  you can help, please leave a comment below (if you are reading this on the Parkinson’s Journey website) with the information above (your name will not be included unless you want it to be and comments will not be poste). Or, if you are reading this elsewhere (Facebook group or page, Twitter, etc), you can email the information to me (Sherri) at  parkinsonsjourney@gmail.com
 
Thanks!

YOU COULD EARN $300 FOR HAVING PD AND A RECHARGEABLE DBS IMPLANT!

Qessential, a medical market research company that is devoted to the medical device and pharmaceutical industry, has a client that is currently seeking to conduct in-person interviews with individuals who have Parkinson’s disease and who have received a rechargeable DBS implant for the management of their symptoms.

The goal of the study is to understand what the individual dealing iwth PD goes through, how he or she makes the decision to get a DBS unit, how both the device and his/her condition impacts day-to-day life, and what could be changed about the device or the process of receiving the device that might make things better for the individual, as well as for others dealing with the same situation.

The study involves a two hour in-home interview with an honorarium of $300 upon successful completion. Interested individuals may contact Deborah Booker of Qessential directly at 1-800-932-4249 or email her at Deborah@qmmr.net.

Please note:
*Patients should have rechargeable units.
*Patients should have received implants preferably (not mandatory) within the last year.

*Patients should preferably (not mandatory) be under the age of 70.

The company is happy to speak with individuals who fall outside the preferred parameters, as well, and to add their contact information to their database so that patients can be contacted about future studies related to PD.

 

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.


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