Fighting Through the Pain

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I can’t believe it’s May 1st. I should, as we celebrated my two boys’ birthday last night. 26 and 30 years old. Born the same day, four years apart. It leaves me amazed, for lack of a better adjective, how quickly the days and years have passed. It also makes me sort of sad, as watching my grandkids during the day leaves me realizing the same thing is happening to them.

I think as a young mother, you don’t realize how fast the time is slipping by. Your too busy changing diapers and running bath water. Doing tubs of laundry daily and wiping up spills. You’re consumed with the next activity whether it be a softball game or assisting with homework that you don’t realize your days til they walk out the door are now limited when at one time you thought you had forever.

I’m not sure how all that came out except to go back to the beginning and say once again, I can’t believe it’s May 1st. Parkinson’s Awareness month is now over and I flaked out on making others aware. Go ahead and throw the tomatoes. I don’t think I could have done any better.

I’ve been trying to meet a deadline for three writing projects I’ve been working on and it was last night so perhaps that accounts for the fact that this post is being written. It may also have something to do with the fact that John is sleeping and Clara is at preschool.

Anyhow, as my grandkids grow, I wonder, will today be the last day for opportunities to rock them because they won’t fit on my lap any longer? Will today be the last day for Clara excited to see me when I pick her up from school and she runs into my arms? Will today be the last day John is enamored with a hummingbird and waves bye-bye as it flies away?

Sometimes life can bring us down. Who am I kidding? Sometimes life DOES bring us down. The important thing to remember is it’s deadly to stay down. We don’t necessarily die physically, but when you deal with a chronic illness day in and day out, constant pain on top of that, loss of mobility – whatever comes with what you have – we can die in our spirit. We lose the desire to be a part of the fleeting days. We want to ‘fleet’ right along with them. Life is sometimes, almost, unbearable.

That’s one reason I watch my grandkids – because life is so precious and we aren’t promised tomorrow. That can be taken two ways. First, we aren’t promised tomorrow in that we may not have the opportunity ever again to spend time with those we love. We may choke on an olive at dinner tonight and that will be it. Second, we aren’t promised tomorrow in that we may still be here physically, but be in a place where we can’t have our grandkids on our lap or they’ll tip our wheelchair over. You know what I mean.

I know that if I don’t choke on an olive at dinner tonight leaves the possibilty(not set in stone) of not being able to do things with others later because of the road this disease may take me down. And so, I have to make a choice. In spite of the pain, loss of movements, tiredness and everything else that can come with a chronic illness – do I say forget it and give in to that dying spirit or choose to endure through the pain and whatever else and keep fighting this thing?

I choose to fight.

There are some of you who may not be so sure today. That is what prompted this post. Somebody may feel like giving up, giving in. Please don’t. If you don’t have the strength to fight emotionally, write me, leave a comment, message me on Facebook. Something. You are not in this alone. I will fight with you. I will fight for you. I’ve been there in the dark place and fighting is so much better because even in the pain, life is precious.

Journeying with you,
sherri

Posted in Inspiration/Humor | Tagged , | 10 Comments

Do Medicines Treat PD?

20130411-110647.jpgYou have been told you have, or someone you love has, Parkinson’s disease. You’ve also heard it is incurable. Nevertheless, can it be treated? If so, what medicines are used in the treatment of Parkinson’s disease (PD)? This question was posed on a site I wrote for and I thought I’d share my article here.

First, let me say, I was diagnosed with PD over five years ago and misdiagnosed over fifteen years ago. As stated earlier, Parkinson’s disease is not curable, but it is treatable – to a degree. Just maybe the day you’ve reached your last degree will be the day they announce a cure.

No one I have ever met likes taking pills and yet, to treat Parkinson’s effectively, there is no way around it for the common patient. Each patient must also understand that PD affects each person differently and so each patient is treated differently and different medications will be used accordingly.

My drug therapy has been conservative, according to my neurologist. For example, one medication (if needed) is added at a time at my check up. This is done so that the physician is able to identify correctly, which medication a patient is reacting to, should side effects occur. This is a much safer procedure than starting with eight pills, three times a day and working backward.

Drug companies/pharmaceuticals would go out of business if they were not constantly coming up with improvements to the treatments already available on the market. That, in and of itself says there is progress being made in treatments for PD and other diseases/illnesses.

While I said earlier that PD is not curable, it is treatable. Treatable, however, will look different for you than it does for another patient. Some will be behind you in their progression of the disease, some ahead. It also depends on how each individual doctor believes or thinks best how the disease should be treated. As you can see, many different factors come into play when a physician must come up with a custom treatment for each patient that will best suit him (the patient).

Of the medications available that physicians choose for their patients, some of the more tolerated and beneficial seem to be Mirapex (although noted with serious side effects for some), Sinemet, Artane, Requip, and Comtan. Other various medications might be added to the mix dependent upon the patient’s symptoms and needs. Those could possibly be Azilect, Lexapro or another anti-depressant (one of the first notable symptoms of PD is depression), Amantadine, etc.

Each patient is unique and different and patients’ needs and reactions to their treatment will be different. What works for one may not be tolerated or work well for another. Hopefully, the drug treatment is scaled to your individual needs and will treat your symptoms, but only your doctor can decide with you what is best and what is needed. New steps are being taken every day and progress is being made at nearly the same rate in working towards a cure. Until then, it is best for patients to follow their regimented treatments until something better comes along. It will if we all keep fighting and do not give up.

Journeying with you –
Sherri

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Do You Know?

Are you AWARE that April is Parkinson’s Awareness month?

Quiz:
What do these logos stand for in the Parkinson’s community? If you’re unsure, click on it to be taken to the website.

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Something to Laugh About – Kids Say the ‘Darndest’ Things

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My mom was telling me about a friend of hers who had told her well-behaved grandson to think of something fun to do the next time he came to spend the night with her. For weeks, she reminded him of his task as the days to his ‘grammy and me’ time drew nearer.

Finally the day arrived. Excited, he entered his grammy’s house and Grandma couldn’t wait to hear what he had come up with.

“Well Jake, what fun thing do you want to do tonight?” she asked him, eagerly awaiting his reply.

“I want to say bad words!”

(Sometimes I know just how you feel, kid!)

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Another Angel – Guest Post by Cherie Mann

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My sister-in-law Linda, is my Angel. Linda helps me with my PD, or I should say we help each other with our problems.

She recently became legally blind and I was diagnosed with PD. We also both lost our jobs at about the same time. She has been there for me and I hope I have been there for her. And – we have bonded.

When she notices me struggling to finish our walks together, she has been my cheering section, while at the same time, I am her eyes during the walk and tell her where there is uneven ground that she might trip on. She forgives me at the end of the walk when all my concentration is on walking (‘heel/toe”) and I don’t notice the tree branch that hits her in the face.

I am her driver to the doctor, the bank, store and to church. She comes with me to my appointments to be my memory when I have brain freezes and to fill out forms for me (micrographia). I have problems multi-processing, starting jobs and following through and finishing them. She would gently remind me of a task not completed or say “Is there anything you want me to do to help you complete it?” I lose track of the time.

In order to take my meds, she bought me a three-alarm watch for my birthday. She also volunteered to be my assistant when I volunteered to help with registration at the Diabetes Walk in our area. I walked the 10k since 1995, but decided to volunteer this year instead. When I received the instructions for the event, I was concerned about the multi-tasking involved and so she came with me and helped with handing out t-shirts and putting on wrist bands and keeping me on track while I collected money and handed out maps and raffle tickets. I then drove her to her father’s house. So it has been kind of a give and take. It has been nice.

She sometimes notices my symptoms getting better or worse before I do. She’ll say “You must be having a bad day” or “Did you notice that you only used one arm to get out of the chair?” or “You are standing straighter” or “You’re walking faster”.

She has been my angel and hopefully I have been hers.

I also have alot of others – my mother, my band and people from my church, to name a few. Also, the friends I have made here online. There is always someone around to listen and understand.

Until I wrote this down I hadn’t actually realized how many ways Linda has been my angel.

Thank you, Linda.

***Note: Thank you to Cherie Mann for submitting this piece. And thank you, Linda for being there for her. You are both an inspiration. You can catch a peek into Cherie’s wit by checking out or winning funny PD story that she submitted last November on changing lightbulbs.
~ Sherri

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