Are you AWARE that April is Parkinson’s Awareness month?
What do these logos stand for in the Parkinson’s community? If you’re unsure, click on it to be taken to the website.
I came across this video, Welcome to Our World – World Parkinson’s Congress 2010 video by Pamela Quinn , this morning.
It was submitted (and took first place) by her (Pamela Quinn) for the World Parkinson’s Congress gathering of 2010. It is extremely powerful and I recommend it for a great prep to get you off to a running start in promoting awareness of PD for Parkinson’s Awareness Month coming up in April.
What awareness ‘techniques’ do you have planned? Please share!
Journeying with you,
A wonderful email awaited me today from PAN, aka Parkinson’s Action Network. I am sharing it with those of you who haven’t seen it or know what PAN does. A HUM-ONGOUS shout out to those who make up PAN and the others who fight for us with PD and other chronic and degenerative diseases. You rock!!!
Dear Parkinson’s Community,
As you may recall from earlier emails, in early 2011 the Parkinson’s Action Network (PAN) joined with the Center for Medicare Advocacy in a class action lawsuit against the U.S. Department of Health and Human Services. The lawsuit challenges the Center for Medicare and Medicaid Service’s (CMS) policy that denies Medicare coverage to those who are unable to show that they are improving from certain skilled care services, including therapy. Needless to say, this policy is blatantly absurd for those with degenerative diseases, like Parkinson’s, where services such as therapy may be exactly what is needed to help slow degeneration. PAN was joined in this lawsuit by a small number of individual plaintiffs and national organizations, including the Alzheimer’s Association, the National Multiple Sclerosis Society, and United Cerebral Palsy. The full name of the case is Jimmo v. Sebelius, No. 11-cv-17 (D.Vt.). There was an excellent article in the NY Times about the case and the settlement today.
I am extremely happy to tell you that, thanks to the outstanding advocacy work of the Center for Medicare Advocacy that took the lead in arguing this case, there has been a very favorable settlement filed with the federal court. The bottom line is that CMS has agreed to change the policy. Specifically, CMS has agreed to:
revise its policy manual to state that coverage decisions for benefits such as skilled nursing facility, home health, and outpatient therapy, and for inpatient rehabilitation facilities, cannot be based on a beneficiary’s potential for improvement, but are to be based on the beneficiary’s need for the care; conduct a nationwide education campaign with providers, contractors, and adjudicators to inform them of the changed policy; andallow class members who received a non-appealable denial of these important skilled care services within the period of the lawsuit to have their claims re-reviewed.We have every reason to believe that the court will accept the settlement agreement and that the policy changes will be implemented soon.
In these complicated times, it is important that PAN’s advocacy efforts have a balance between the public policy challenges of current services, particularly Medicare and Social Security, and those involving biomedical research and the efforts to find better treatments and a cure. PAN’s involvement in this case is a good example of the value of keeping that balance.
Thank you for all of your support of PAN.
~Amy Comstock Rick (PAN)
Whether you’ve got ‘regular’ Parkinson’s disease (disease manifests itself after age 55-65) or have been diagnosed with Young Onset Parkinson’s disease (PD manifested before age 50), sooner or later you’re going to want to talk to someone who really understands – someone who’s been there and fighting their battle to win.
A support group is like a team. There needs to be a captain – someone who leads, keeps things going, encourages the team, downplays the negative. In order for the team to perform well, each player needs to be in the game. Just because you’re part of the team in number, doesn’t mean you’re ‘part of the team’. Bench sitters don’t appear to contribute a whole lot but some do and others certainly can. Bench sitters have a great opportunity to offer encouragement to their teammates. To offer a cup of cold water when a team member runs to the sidelines.
As a player on a Parkinson’s team, maybe you’re a bench sitter right now, not fully able to participate; but you sure can cheer those on around you. And if you’re a player who is still able to move freely without many constraints, don’t forget about the bench sitters who long to be in the game, but find themselves ‘benched’ for now, through no fault of their own.
And – remember for every team, there are fans. They faithfully come out, watch the tough plays, and cheer on the team from the sidelines. They are there in the rain, the cold and biting wind, the hail, the scorching heat, the stormy winds… No matter the weather, they always show up.
Whatever part of the PD team you’re in or on, you’re not alone. As a patient or caregiver, contact us if you’re feeling isolated and need some encouragement. That’s why we’re here.
Journeying with you,
BE A.W.A.R.E. - updated for Parkinson’s Disease Awareness Month, 2012
Aware: to be alive, wise, and sensible about something. To be knowledgeable, alert, attentive, awake, enlightened, informed, mindful, sharp of or about something. The opposite? To be ignorant, insensitive, unaware, and unconscious over or about something.
Before we (as people with Parkinson’s disease and/or caregivers of such) had this Little Monster come to live with us, how many of us were very concerned about Parkinson’s Disease? We have all had friends and/or loved ones who have had an illness, disease, etc. where we have watched them suffer and perhaps then have become ‘aware’ of that illness because of what we personally experienced. However, it is usually not until someone close to us has a disease that is incurable, an illness that is unexplainable or a condition that is irreversible that we become involved to some degree.
I have to admit, I did not know much about Parkinson’s disease (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 did not know him well. I remember watching him shuffle and hold his right hand as if he had had a stroke. He did not talk much and he would get extremely frustrated.
April is Parkinson’s Disease Awareness Month. A month to focus specifically on a disease that is presently incurable. To focus on advances made against what I like to refer to as, The Little Monster.
Being or becoming aware of Parkinson’s disease 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. 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, Parkinson’s Disease 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 need to make others aware of it and how it affects the human race as a whole (with all its future possibilities) so that I can know best how to deal with the effects of the disease.
I cannot make someone else ‘aware’ of PD unless I understand it as best I can. 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 to 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 (see above for refreshment), here is another way to look at it:
A – be Attentive – There are others who have Parkinson’s disease 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 others with PD. 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 Parkinson’s disease and you are experiencing it. Make wise choices that will give you a better life from here on out. Parkinson’s disease isn’t a death sentence but it can be a wake-up call for many.
Exercise.Tai Chi, Yoga, Water Aerobics, short walks, bicycling – these are all good ones for people with Parkinson’s disease.
Eat healthy. Contrary to popular belief, chocolate is not one of the four major food groups. But yes, it should be. You know the drill – stick as close to natural as possible. Shop the outer aisles of your market – not the processed, oil induced, fake stuff.
Find a support group. Online or offline. Don’t stop ’til you find a fit. We all need support from those who have ‘been there/are there’.
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, Parkinson’s disease 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 – at times 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 could not scoop the dirt. Did it frustrate me? Yes, but 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 (maybe have a bon bon or two in the process). It is sad to say, but I know of people who 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 for a specific disease faster than a person with that specific 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. Nope.
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 sympathies of others – be extraordinary! Push past the pain, take the pills faithfully with thanksgiving for medication that helps- at least they have made that much progress! Cast the fear aside – as best you can. No one, not even the best doctors can tell you just how the disease will progress in you, so take one day at a time and be thankful that even though you may be shaken, at least you are shaking and living to talk about it. Lastly, if you are a complainer, life is too short to be spent in such a way. We all have burdens to bear. For some – many. It could always be worse and for some with Parkinson’s disease, 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.
wife. mom of 3. grammy to 2. daughter of the King. bridge to the Prince of Peace. a tad bit crazy. chocolate mint ice cream addict. love gardening and wind and storms and snow. obsessive photographer. compulsive pinner. young onset parkinson's diseases recipient. christian writer. living to write. writing to live. trusting my Prince.
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