Tag Archives: advocacy

10 Things A Parkinson’s Patient Wants

  1. To feel good.
  2. To smell (what’s baking in the oven).
  3. To have people believe that the person with PD isn’t pretending to have a chronic disease. Really. We have better things to do.
  4. For others to understand that although they can’t see all of the effects, the disease is real.
  5. More dopamine. We gotta have more cow bell dopamine.
  6. To not shake all the time. It would be so nice to stir our coffee because we want to.
  7. For others to be aware of the struggles and invisible symptoms people with Parkinson’s face so that they are better able to understand the fervency and urgency of a cure.
  8. To find a drug that doesn’t knock you out for half the day, but instead, knocks out PD.
  9. A plastic bat to hit others over the head when they make thoughtless comments.
  10. A cure. 

That’s all.

A Song for Parkinson’s Disease by A Woman with Parkinson’s Disease

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Dora Leonard is a reading teacher in an elementary school in the suburb of Chicago, a wife and mother of 3 children.

Dora was diagnosed with Parkinson’s Disease in December 2013; two months after she turned 50.

Inspired to write a poem in December of 2014, she later asked her 22-year-old college son, Jeremy, to compose the melody for it. They asked a singer from their church to sing the mother-son creation for them and hence, the song I Will Choose was created.

The sales proceeds of this song (available on iTunes) is donated directly to the Michael J. Fox Foundation research for finding a cure. Dora is hoping that by sharing this informationw with others, it will aide in finding a cure for those who live with Parkinsons’s disease.

I Will Choose, by Jeremy Leonard, is sold on iTunes, Amazon and Google Play for 99 cents. You can preview the song by clicking on the link ‘I Will Choose’ above.

Parkinso’s Disease: Be A.W.A.R.E.

  I have to admit, I didn’t know much about PD until I started learning what was going on with me. The only other person I ever knew who had PD was an older friend of the family and I didn’t know him well. I remember watching him shuffle and hold his right hand as if he had had a stroke. He didn’t talk much and he would get extremely frustrated.

April is Parkinson’s Disease Awareness Month. A month set aside to bring awareness toward a disease that is presently – incurable. To focus on advances made against what I like to refer to as, Little Monster.
Being or becoming aware of PD for me is a little different from how others may view the purpose of this month’s ‘awareness’ topic. In a sense, there are so many causes which we become involved in and aware of that it’s easy to sometimes lose the focus and attention that is needed to make a difference in just one of them. If there is not enough attention drawn to the topic, awareness declines. That leads to no funding which leads to no research, and finally, no cure. So, all to say, we all need to be ‘aware’ and make others aware, but I’m putting a little different spin on it for the purpose of this article.

For me, PD Awareness Month takes on new meaning. I need to become aware of every aspect of this disease in order to deal effectively with it. In the process, yes, I will be making others aware of it and how it affects the human race as a whole, (with all its future possibilities) as I am learning how I can best deal with this disease.

I cannot make someone else ‘aware’ of PD unless I understand it the best that I can, myself. I need to learn as much as I can in order to depart the wisdom to others who do not know much about it. Just having the disease does not qualify a person to know exactly what it is or how it is affecting or could affect you. We need to make ourselves and those we love, ‘aware’ of it first. We need not deny the fact that we have a chronic illness, but seek out relevant information so that we know the best way to live with and manage it. 

 

Now that you have had a snippet of what aware could or does imply, here is another way to look at it:
Be…  A.W.A.R.E. …

A – be Attentive – There are others with PD around you who may be feeling worse off than you do. Look and see. Encourage them. Send a note and brighten their day. Call and chat with them. Take them for lunch. Be attentive to those around you. There’s less you can do than you once did, it may take a little longer, but you can still do something. Praise God!

W – be Wise – Knowledge is just gathered information, whereas wisdom is information coupled with experience. You have learned about PD and you are experiencing it. Make wise choices that will give you a better life from here on out. PD isn’t a death sentence but it can be a wake-up call for many. Exercise. Eat healthy. Find a support group. Impart your knowledge that you have gathered and the wisdom gleaned from life’s experiences with a newly diagnosed person. Those first beginning months can be frightening if you do not have much to go on and no one to talk to who truly understands.

A – be Alive – As mentioned above, PD is not a death sentence. Does it complicate things? You bet. I was trying to plant seeds today – an activity I used to do alone. However, my fingers, hand, arm – many days they just will not do what my brain tells them to do. They do what they want and that is pretty much nothing. They refuse to hold onto things, to grasp things. So, I asked my husband to fill the pots with soil for the seeds we were starting, as I couldn’t scoop the dirt. Did it frustrate me? Yes. I had a choice… I could ask for help and still be a part of the process or I could walk away, curl up in a chair and just wait for life to end. It is sad to say, but I know of people that think that is the only option a PD’er has left when diagnosed. I choose to be alive and not only make the most of each day, but enjoy each day as best as I can.

R – be Ready – Ready for what? A cure!!! No one wants a cure faster than a person with an illness. In order to be ready, we need to be active while we wait. Ready is a form of waiting. What are you waiting for? Get involved in raising awareness in finding a cure. It takes many people to make something happen. Thomas Edison didn’t really invent the light bulb alone – unless of course he invented every little part needed to make it happen. Not.

E – be Extraordinary – While waiting, be extraordinary! I think this is my favorite part of the acrostic. Do not be ordinary – a person who complains with every pain, growls with every pill swallowed, fears what may come, or always has to be feeling the worst to gain the most sympathy of others. Be extraordinary! Push past the pain, take the pills faithfully with thanksgiving for – at least researchers have made that much progress! Cast the fear aside – no one, not even the doctors can tell you in certainty just how the disease will progress in you, so take one day at a time and be thankful, for  even though you may be shaking, at least you are shaking! Lastly, if you are a complainer, life is too short to be spent in such a way. We all have burdens to bear. It could be worse and for some PD’ers, it really is. Be extraordinary.

Of course, we all know that ‘awareness month’ for any cause, disease, etc is to help others become aware of the specific topic being highlighted. So go ahead and enlighten others, spread the word, share the ‘awareness’, but take care of yourself in the process…

Be attentive to your physical needs

Be wise in your choices

Be alive, as you still have a lot to do and much to give

Be ready, waiting and preparing for that cure

Live in such a way that others will flock to you and ask how you can handle it so well when you lose your balance, shake, stutter and stammer. When that happens, you can smile and know you are extraordinary.

Journeying with you,

Sherri

Bringing Awareness to Something You’d Just as Soon Forget

  
Some  people think Parkinson’s disease is a movement disorder and they would be correct. Others would say it is a disease that affects more than movement and they would be right. Some say it starts with a tremor and that is likely. Some say it starts with stiffness and that is a possibility but did you know the first symptom that is often overlooked and undertreated is depression?

April is Parkinson’s Awareness month and with that comes a responsibility to make aware the effects of this disease to the community at large by those affected by it. If people wtih Parkinson’s disease (PD) or people who know someone with PD don’t bring an awareness to this debilitating disease, no one else will. If it’s not important to make known the importance of finding a cure with those affected by PD, it won’t be important to anyone else.

PD can take many forms. It can begin with depression, as stated above, include tremors, dystonia (a cramping and tightening of the fingers, feet, neck, and/or other parts of the body. The Parkinson’s patient can experience dyskenesia – involuntary flailing about movements. These are the signs/symptoms that most people generally associate this diease with, but that is becasuse these are the symptoms of having Parkinson’s that are visible. Other signs that are not as commonly known and have been associated with having Parkinson’s disease include losing the ability to smell, uncontrolled drooling, a softening of the voice, walking as if you are dragging your foot, a shuffled walk, tripping/falling, and more.

Parkinson’s disease is also known as an invisible diease becasuse there are many other symptoms that are found with having PD. Along with the visible signs, the invisible signs take just as strong a toll on the body, both physcially and mentally. These invisible signs can include severe back and neck pain, migraine-like headaches, a tightening of the muscles, a change in handwriting quality, an expressionless face, and also depression, as mentioned above. 

Someone can have all the symptoms associated with PD, some of the symptoms, and/or some sympotms can change or disappear. PD mimicks so many other diseases, such as Lupus and Multiple Sclerosis that it often makes it difficult to properly diagnose and often takes a neurologist who speciaizes in movement disorders to make a correct diagnosis. This is especially true with people who are experiencing symptoms at an age uncommon to those riddled with PD (the elderly).  This age group of people – those who are diagnosed under the age of 60 – are known as patients with Young Onset Parkinson’s disease (YOPD) and the number of those being diagnosed with YOPD is increasing daily. What was once known as an “old people’s disease” is becoming more common with those under the age of 50.

There are several organizations with resources readily available for the asking. These include the Michael J Fox Foundation (michaeljfox.org), the Natioinal Pakrinson’s Foundation (parkinson.org), and the American Parkinson’s Disease Association (apdaparkinson.org). In Oregon, the Parkinson’s Resources of Oregon (parkinsonsresources.org) is available to answer quesitons regarding PD and also has much informatioin available to the public as well.

PD doesn’t play favorites. It does not take age into account, gender, or race. It can affect anyone, at any time. It can advance quickly or it can progress slowly. The cause and the cure is still unknown, which is why bringing awareness to this disease is so important. If I (now 55 and having had PD for 24 years) don’t think it important in bringing awareness to this debilitating disease, I can’t expect anyone else to think it important.

Journeying with you,

Sherri

Is Your Spouse Faking It?

 I know of a woman whose husband tells her that he doesn’t believe she has Parkinson’s disease and that she pretends to have it to gain attention and sympathy. While this is not common, it’s not unheard of. You can call it denial on the part of the spouse. You can call it ignorance. You can call it whatever you want, but who in their right mind would want to pretend to have Parkinsons disease? 

 

Who, in their right mind, would choose to pretend to fall, to stutter, have coughing fits, or drool? Who would choose to pretend to speak in such a low voice so that you constantly get told to “Speak up! I can’t hear you!”

 

And who would want to pretend to shake in public so that every eye is on you? Of course there is the stone face that makes you look mad or apathetic all the time.  Perhaps if you paid me thousands of dollars to pretend I have PD in a movie – no, millions – I might consider it, but to pretend day to day to have a debilitating disease? Give me a break. And, wouldnt someone (whos pretending) rather spend thousands of dollars on a vacation, rather than give it to a doctor to make the game of pretend seem even more real?

 

Here is comment I personally heard a husband say to his wife (with PD)  who was acting a bit strangeIts like somethings wrong with your brain.”  

 

Gee… ‘Ya think? 

 

Every morning we wake up and gather the strength to get out of bed. We dont just pop up like a toaster tart and stretch like Jane Fonda. No – we push ourselves up our stiff, rigid,sore selves and (some of us) dont even consider stretching for fear of our muscles cramping up and putting us into seriously painful contortions.

 

We shuffle to the bathroom like a weighted penguin and thank God for the person who invented elastic waistbands.  We shower, washing the same frame as always, but taking twice as long as it once did, not so very long ago. We brush our teeth with electric toothbrushes so we dont tear our gums apart should the tremors take over during this daily task.  We dress, again taking twice as long as it once did and sometimes needing help, especially if there are sleeves, buttons, shoe laces, or socks to be put on.

 

After we have dressed and if we havenalready had our mornings medicinal cocktail, we have it now. It varies, however, depending on who you are and the doctor you have and whats going on with you personally in regards to your specific journey with Parkinson’s disease.  My regimen? Currently, because of having Deep Brain Stimulation, I now only  have six pills for breakfast, two for lunch, two for supper and one for bedtime. Mmm, mmm good. Did I mention the side effects that the medicines can cause?

 

As you learn to live with PD, you soon come to realize that every new day can present a new battle to fight. Every patient with Parkinson’s disease, as is true with any disease or illness, faces a different kind of day. Though their symptoms can be the same as another patient with PD, their medication may  vary due to tolerance or helpfulness. They may be on the same meds but their symptoms vary. One person may be having a good on’ day, with their meds working great, while another is having an off’ day where their medications dont work much at all anymore. They may be in the end stages or in need of re-evaluation.

 

You may act crazy where once you may have been seen as calm and quiet and a touch on the introverted side. Perhaps its the Parkinson’sPerhaps it’s because of the Parkinson’s and having come to the realization that you only get one chance at today, so you better make it count

 

Ive heard it said that with Alzheimers, the patient doesnt recognize family or friends after a while, whereas with Parkinsons disease, family and friends may not recognize the patient. A person with PD can act different. They can think differently than they once didOr maybe those of us who say we have Parkinson’s disease are merely trying to confuse those we love by pretending to act disabled because we have an unhealthy need for attention. Not.

 

If you know someone who says they have Parkinson’s disease and you think they are pretending, please think again. Theyd much rather pretend to be Cinderella or Prince Charming and live happily ever after than drooling all over themselves like a teething baby.


April is Parkinson’s Awareness Month. Please educate yourself on the disease if you haven’t already. For someone’s sake.

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