Taking Care of You

imageI attended a conference on Parkinson’s disease where one of the speakers stated, “Hope is medicine.” In so many ways, that is so true. Fyodor Dostoevsky once said, “To live without hope is to cease to live.” As a Parkinson’s patient, it may be hard at times to feel hopeful.

One of the first symptoms that is often overlooked while Parkinson’s is making its mark on your life can be depression. By the time you are diagnosed, you may feel like your whole world has caved in and diagnosis is like a thousand ton weight of steel that has just landed on top of you as you lay there in a pit of grief.

A hard thing for us to talk about, much less deal with as a people in general, is depression. The difficulty of dealing with it only increases when you have a condition like PD, which can lend itself to making depression one of its star players. It can play a toll in the relationship between the patient and his/her caregiver, especially if we, as the patient, neglect or forget to take our ‘happy’ pills. It is my firm belief that if we are not taking care of ourselves emotionally and mentally, it will be a struggle to care for ourselves physically. When our mind is not functioning well, we tend to look at our disease with a somewhat distorted view, making it even harder to handle. Often, the distorted view only continues in a mental downward spiral.

If you’re struggling to find anything good in living with Parkinson’s, is it from viewing life with an outlook of despair and hopelessness? Do you think you may be someone who would benefit from an anti-depressant? Let me be clear – this is nothing to be ashamed of. Having PD is real and so is the depression that can come with it. I have told my husband (my caregiver) he has my permission to ask (when I feel like giving up in life) whether I’ve missed a dose of my meds. I can, within two missed doses, go from having a good day to wanting it all to end. It’s extremely hard, if not impossible, to care for yourself when your desire to keep going is all but gone. However, when your desire to live your life to the fullest is there, in spite of PD, this life can be a a pretty wonderful thing.

How can a life with Parkinson’s disease be a wonderful thing? As with any disease, it makes you take a different view of life. Your life, in particular. Where you may have once thought of yourself as insignificant, worthless, unimportant or any of those lies we tend to feed ourselves, you may now realize that you are of value. Why else would you seek out a doctor’s care? A support group? Because you matter. You may not have worked through the whys or the hows but somewhere, consciously or not, you have realized that your life means something.

Because your life matters, your quality of life should matter to the fullest extent in which you are capable. For example, if you can offer some time to one less fortunate – reading to a hospital patient, listening to a homebound veteran tell of his experinces – do it. Doing activities like this can often remind us that things could always be worse and how good it feels to be able to help another. If you can sing, sing out loud. It’s good for the heart and for those with PD – it’s good for the voice. If you love to do artsy things, don’t stop because someone told you have PD. If you have to change to a different art form, change. Just don’t quit. Walk, if you can. This is good for the muscles, good for your heart, good for the spirit. If only intentionally around the house, walk. Talk to someone. When we feel like a burden, we can often shut down. This is when I find it most hard to open up and when I find it most needful to do it. Talk to someone. Let them remind you of the truth – you  matter. They’ll remind you that you are here for a reason and gently ask, “By the way, did you take your happy pill today?”

Living with Parkinson’s disease is downright hard. It’s a day to day battle of pain, a fight for control, and an acceptance of the unwanted. It’s learning how to live a new normal while everyone else continues with the familiar. It’s learning to realize you matter and there’s a reason you were chosen to carry this load, to walk this path. So, while on this journey they call Parkinson’s disease, take care of you. Take good care of you. And don’t forget to take your meds.

“If you’re reading this…
Congratulations, you’re alive.
If that’s not something to smile about,
then I don’t know what is.”
Chad Sugg, Monsters Under Your Head

What Mirapex Can Do

Weeping Willow
Weeping Willow

The drug Mirapex, which is often prescribed to Parkinson’s disease patients, can have side effects. Most all drugs do, to some degree, with one person or another. Everyone reacts differently to medications. You can watch a recent interview with Michael J. Fox and he will tell you that most of his rocking movements are due to drugs he has taken. That can be part of having Parkinson’s Disease (PD).

With Fox, you can see the effects. Yet, there are some side effects from drugs that go unnoticed and for most, these are physical reactions. Nausea, headaches, dizziness, etc., to name a few. But what about a side effect that no one wants to talk about? What if the medication you were taking was what was causing the bad habits you had begun and you were too ashamed to tell anyone about it? What if no one believed you had never even had an interest in the silent sins you were continually focusing on nowadays? Things like gambling. Things like sex and pornography.

Mirapex is becoming more widely known for the ‘secret’ side effects that are running rampant in its patients. The worst partis these people – patients – are suffering, blaming themselves for their broken relationships and their downfalls. They blame themselves for losing their homes and do not even realize that a drug may be the culprit for their behavior.

The internet, while often being a trap to bad habits, can always be a shelter for some who do not know where to turn. I have a website that focuses on encouraging PD patients and offering hope. I am on Facebook, constantly inviting others with PD to be a part, in either following, contributing their experiences, or writing in if they need a listening ear, a friend.

I had a fellow contact me on Facebook the other night and share his story – one that is more common than we realize. He was on Mirapex, ingesting th drug faithfully at the proper times and intervals. However, unbeknownst to him, something in his brain was reacting in a negative way to the Mirapex. He began fantasizing about women. He began indulging in pornography.

For some, it can stop there. For some, they have go on to lose lifelong relationships that had been built on trust and commitment. Spouses of PD patients have found that the once so-called trust and commitment they once had has now disappeared. It has been replaced with Parkinson’s and a drug they continue to take because they don’t know any better. They are afraid to talk about their behavior with anyone and tHereford never find that it could very well be connected to their medication. After all, side affects like gambling or pornography can’t really be from a drug. Or can they?

Each time I see my neurologist, he asks me if there are any changes. I do not take Mirapex anymore (due to its decrease in effectiveness), but the drug I do take (Requip/Requip XL) has been known to mimic Mirapex’s side effects.

PD is hard enough to deal with without the issues of serious side effects of taking such potent drugs. We are not talking about a headache. We are not even concerned with nausea with this baby. We are talking about relationships destroyed, jobs lost, lives changed forever. Not from the disease itself, which would be understandable, but from what begins to happen when our drug therapy goes haywire.

It is because of things such as this that it is important to faithfully and regularly monitor any reaction to any drug. It is important to monitor and record any changes that occur, whether physical, mental, or emotional. Some drugs alter moods. Write it down. If it goes on for more than a week, do not hesitate to call your physician. If a habit begins to form afree beginning a new drug, do not waste time consulting your doctor about it. It is quite possible that it could be linked to the new medication. When you pick up your new prescriptions, ask the pharmacist about the side effects. Most pharmacies now include a flyer with the side effects and information on medications. It is worth the read to know.Requip

2016 Christmas Gift List for People with Parkinson’s Disease

Winter Wonderland
Winter Wonderland

Well, it’s that time of year again. PJ’s annual Christmas Gift-giving Idea List. What I’ve done in the past is posted the previous lists, most recent to latest and then added to the previous list but this year I will link to the previous list and list the new products separately below, as the list is otherwise pretty overwhelming (but good!). So… here goes:

2016 Christmas Gift List for People with Parkinson’s Disease

There is an excellent website (stander.com) that carries many awesome products for people with disabilities in general, but after looking at what they offer, it is a great site for PD people. A handle that helps you get up and out of your car (item name: Handy Bar), a device (EZ Stand-N-Go 2200) to get up off the couch, a walker (EZ Fold-N-Go Walker 4300) that folds like a manageable stroller, grips for door knobs that enable you to more easily turn knobs on closet door, bathroom doors, etc. Another favorite: A Lever Extender that attaches to recliner handles for easier ups and downs. All products can be found at their website above.

img_3426 There is a company that makes beautiful bags/pouches for people with wheelchairs, walkers, etc. The company, HDS Medallion, makes carry-all bags that “make a statement”. They are easy to attach and there are lots of great designs for both men and women and attach with Velcro straps.

Nuberella helps avoid an unplanned weather shower. The uniquely designed umbrella especially for someone living with a disibility can be adjusted to the body for a hands free protection that fits right over wheelchairs or sits atop your head.

Wheelchair Accessible Game Table – Every night is poker night with this wheelchair accessible game table. Games such as checkers, chess, and backgammon are featured on the laminate top, equipped with safety edges, eliminating bruises from accidental bumps. And, if you’re not quite ready for a wheelchair, the table leaves extra ‘under the table space’ for passing cards underneath.
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Keystone Electronic Tough Winter Gloves are equipped with Tech Touch pods which allow use of iPod, iPhone or other products while keeping hands warm in the winter. I like the ‘keeping hand warm in the winter’ part best.
Easy Grip Jar & Bottle Opener is a convenient bottle opener, magnet, and gripper all-in-one product that alleviates joint pain while struggling to open medicine bottles or small water bottle caps.

img_3430Be Fit Over Fifty is an exercise program that would make a great gift for anyone with a disability who would rather do their workout at home. There is a program tailored to people with PD.

Mobility Step by Miles Kimball, a manufacturer of products geared to people with disabilities, makes a step that makes it safer to get in and out of rooms with high steps.

Herbal Heat Therapy (8 Oz) Organic Pain Relief Cream and Body Calm Cream 8 Oz Organic Arnica & Msm infused in Shea Butter are great for tight and sore muscles. Used for bruises and more, I have been using something similar to this for about two years for stiffness and soreness. It works wonders! I use a generic version of Arnica Gel (or cream but the gel dries quickly and doesn’t leave that greasy feeling). It is available at WalMart or Walgreens (and probably other retail stores.

img_3424Yoga Toes are gel toe stretchers and separators for instant therapeutic relief for your feet and who, with PD, wouldn’t want to try some curling toe relief???

Several readers have commented that their PWP’s favorite things are flashlights and laser pointers, which you can find just about anywhere.  I am not sure why. Can someone enlighten me, as I’d like to know.

img_3427Friends with Diverse Abilities Figure Set by Constructive Playthings is a set of people of different ages that have disabilities.I included this set with this gift list because, what better way to teach youngsters about disabilities than through every day play/printed games that teach disabilities are just as normal as… being ‘normal’! They appear to be dollhouse size.

img_3425Roof Access Sign was listed in Amazon’s ‘disability products’ search and so, after much contemplation, I finally realized why it was there. It’s for caregivers!!! They will need directions to the roof so they have somewhere to go and scream when we are giving them a hard day!!! So, should you need a ‘roof access’ sign, you can find one here.

And now, my favorite

When I attended a Parkinson’s this past summer, it was asked of  panel made up of doctors, people with PD, and others, what is the best way to exercise and the doctor on that panel answered – get a dog.  Yes, get a dog. Get a dog that will get you outside. Get a dog that will get you walking regularly, which is one of the best things a person with PD can be doing..

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A dog, if trained well, can assist in keeping you more balanced. Will protect you. Is a great companion and friend. So, if you just can’t bring yourself to getting the person in your life that has PD, send me one. I like Labs. Or German Shepherds. Or well, surprise me.