Ode to Parkinson’s- Poem from Member

Ode to Parkinson’s

Posted with Permission by Author John Tripp, Diagnosed with PD 2006

(April 8, 2012 Version 2)

They told me I have Parkinson’s,

and all they know for sure…

 it will get worse every year,

‘til someone finds a cure.

I felt so alone and frighten,

I’ll become some sort of freak,

bent over and shaky,

unsteady on my feet.

So I began preparing

to hide myself away

but then thought of Muhammad –

(once known as Cassius Clay).

A proud and mighty fighter,

knocked down by this disease,

then stood and lite that Olympic flame

so all the world could see.

Then I thought of Michael Fox,

(he does not hides away)

but leads the charge to find a cure

for Parkinson’s today.

So I make this promise,

I will never hide,

but live life to the fullest

(and set my fears aside).

And though I may be shuffling,

as you pass me by,

I’ll hold my head high as I can

And greet you eye to eye.

 And, if my struggles make you skittish,

 look closer and you will see,

I’m the same person I’ve always been,

just packaged differently.

So when someone is struggling,

be kind as you can be.

It’s not some freak you’re seeing

it’s just Muhammad… Michael… and Me.

Music Enhances Brain Activity

Music is good for us and good for our brains.  Neurobiologist, Dr. Larry Sherman reviewed the benefits of music and the lasting effects of music on our brain chemistry, structure and neural connections.  Music helps people with Parkinson’s move, improves freezing, enhances mood, sense of well-being, creativity and connects us to our world and each other. Sing, dance, pick up an instrument and increase your brain’s potential today.

Presentation by Dr. Larry Sherman  at the Bing Lounge in Portland.  Here is the link:
http://www.bing.com/videos/watch/video/ohsu-speaker-series-music-and-the-brain/1l3grnd0r.

Learn more about music therapy and Parkinson’s disease

How does posture change with Parkinson’s?

Posture changes for many reasons- Some causes are related to Parkinson’s- Some related to weakness-Some related to arthritic changes

• Bent Posture.  A tendency to bend or flex forward is the most common change in posture seen with Parkinson’s disease. There can also be a tendency to flex or bend to one side. It is not known why this occurs but may be due to many factors including muscle rigidity, brain changes that control posture or dystonia. Muscle rigidity (stiffness) and imbalance of bigger muscles overpowering the smaller muscles can cause you to bend over. The muscles that flex, or forward bend the spine or hip may become hyperactive. These muscles that flex your spine forward and limit hip mobility include: the abdominal muscles, psoas major and minor and iliacus muscles.
• Change in Awareness of Posture.  As with many motor symptoms, there can also be a change in postural awareness or your own perceptions of change. When this occurs, you may feel like your posture is straight but it is not. This is similar to what happens with speech (you feel like you are talking loud but your speech is actually soft). Standing straight may seem like an over correction and may sometimes make you feel like you are falling backwards.
• Camptocormia- a severe but uncommon problem. This is another severe but less common posture problem than can occur with Parkinson Disease. It is a severe bending of the thoracolumbar spine or lower back, which is seen during standing and walking and improves while lying flat. This may be severe enough that the upper back is parallel to the floor making it hard to look up or see what’s ahead. A patient with camptocormia is bent forward and possibly rotated to one side while standing, less bent while sitting and able to lie flat on a bed or floor.  Learn more

What is important to you?

Help us make this site yours!

Let us know what is of interest to you and the Parkinson’s topics you would like to learn about by commenting to this post

Are hallucinations caused by Parkinson’s?

Hallucinations are often described as “seeing things that aren’t there.”  In Parkinson’s, hallucinations are most commonly visual and described as objects, people or animals. For many, they are benign visions that the individual experiencing them knows are not real. In more severe cases, a person may not know the visions are not real or may be distressed by and try to interact with them.

Not all people with Parkinson’s experience hallucinations and hallucinations are not caused by Parkinson’s alone. Hallucinations are caused by a combination of medication, stress and the disease.

The risk of hallucinations is greater in older people, those with cognitive problems, and those taking higher doses of Parkinson’s medicines, narcotics, sleep medicines and sedatives. Learn more…

Hot Off the Press – Neupro approved by FDA

Neupro (Rotigotine) is a dopaminergic agonist available in a skin patch.  Many people benefited from Neupro in the past but it was taken off the market by the FDA when it was noted that some of the medicine crystalized on the patch and therefore did not get absorbed well through the skin.

A patch delivery of medicine allows more continuously absorption of medicine throughout the day.  A small percentage of people cannot tolerate the patch  experience skin irritation or rash. Side effects of dopaminergic agonists are still a concern for this patch especially impulsivity control problems, sedation, hallucinations, nausea, and low blood pressure.

Learn more about dopamine agonists…

How do I find a Parkinson’s physical therapist to keep me exercising?

A physical therapist (PT) can help improve balance, flexibility, coordination and strength.  A PT will work with you PD symptoms to find the best exercise program for your movement and pain. There are two parts to this question: 1. Finding the right therapist and 2. How to stay motivated?   The following tips may help:

Finding the right physical therapist (PT) can be difficult.

• Ask your neurologist for the name of a PT in your area that specializes in movement problems from brain conditions
• Call your community hospital’s rehabilitation department and if their therapists are trained as neurology specialist or if they have an active PT program for stroke (although a different condition does require specific knowledge of movement and brain function)
• Interview your therapist on day one to be sure their style, goals and how these goals will be achieved match yours.
• Ask people in support groups about PTs that worked for them

How do I stay motivated after PT?  The problem lies in the fact that PT can not continue indefinitely. Medical insurance such as Medicare clearly states that PT sessions must be oriented toward specific and attainable goals. Once these goals are met a person must be discharged from therapy.  This is true even if a person does better in therapy but declines once therapy is complete.

• You can continue with a PT one on one after discharge but will likely be charged for the service.
• You can ask the therapist for a group of exercises for you to get started with a personal trainer.  You can find personal trainers in many places including the YMCA, Senior Centers or your local gym. Be sure to ask your trainer how much experience they have with your condition.
• Call your community hospital help line for more recommendations
• Consider joining a class at your local community center. Dance, Yoga, Tai chi or even chair exercises can help
• Look for other specialists such as yoga therapists or Feldenkrais instructors that can be of help
• Always get approval from you doctor before beginning a new program

Learn more about these topics on the Wellness Center.  Help others and share what works for you by commenting to this post.