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.

The Arrows of God

    Hollyhock LoveHollyhock Love

The other day a friend who also has Parkinson’s disease (PD) put up a post (that I’m fairly certain stemmed from her personal experience of how people react/relate to her in her dealings with ‘our’ disease) on Faebook.

She said having PD changes her personality, her thinking, and her decision-making skills. She said she liked her old personality. How true this statement is for people having to deal with this little monster. Yes indeed, we would love to have our ‘old’ personalities back, for sure.

She said that hEric PD causes anxiety and depression. I can whole-heartedly relate to this statement.

She said that she appreciates the kindness of others when they hear things that should be obvious [and understandable] come out of her mouth. She appreciates their kindness when they see her do things that may seem dumb, say something backwards, or not know how to answer a sincere, “How are you?” Again, I can relate.

For this type of disease – a brain disease – she does ‘one day at a time’. It’s a brain disease. Not like the flu where you can hopefully sleep it away. Not like a cold that you might be able to sneeze or cough it away. It is a disease of the brain which is intolerable often, undeniably unpredictable at times, greatly misunderstood, and sadly – incurable. It is no secret that the public, by and large, is uneducated, misinformed, and unknowledgeable about Parkinson’s disease.

If you asked someone what Parkinson’s disease is, most people would say, “Isn’t that where you shake a lot – like Michael J. Fox?”

Yes. And no.

Some shake (with tremors) and some (although much lower in number) do not shake at all. Some shake (like Michael J. Fox has been seen to do) on a greater scale, some much less. But it doesn’t start or stop there. There are many more symptoms a person with PD deals with. Visible and many more that are invisible.

Along with the things my friend mentions, you can experience some level of forgetfulness and confusion, as eluded to by her comment in regards to needing help with her DVD player. Now, given that DVD players are naturally frustrating (for me, at least), add that confusion to a person with Parkinson’s disease and you have a major melt-down about to occur, especially if that aforementioned person, with the aforementioned forthcoming possible melt-down has missed one or more of their much needed anti-depressant drug. This can only serve to intensify the forgetfulness and confusion.

I know about this – the forgetfulness and the confusion – because I know this: Parkinson’s disease. As my friend said in her post, “I can’t even work my DVD and my son put on labels with arrows to show me how.”

Her son “put[s] on labels with arrows to show [her] how to” work her DVD. I’m afraid labels wouldn’t be enough for me. I need a full-time techie to serve in that area.

But the arrows – I can follow arrows. I’m really good at following arrows and when my friend wrote that her son labels her DVD player not just with’labels’ but arrows, I had an epiphany…

God has a set of arrows for each one of us. He marks our path, whether we would choose that path or not, with His arrows. And the path marked with the arrows of God are arrows that are leading us out of this world. The paths we are on are leading us home. To a better place. The paths are not marked with maps that remind us of navigating a DVD player, but they are marked with arrows that are easy to follow and as long as we follow them and do not turn to the left or to the right, make a U-Turn or plant ourselves in the middle of the road out of defiance, we are going to male it home. The One who is ushering us out of this world with endless mercy and unending grace is the same One who is waiting to usher in into eternity. I don’t know about you, but that encourages me and gives me great hope.

All we have to do…

…is follow His arrows.