Monday, July 2, 2012

CF, PLS, Oh.. Acronyms

Introducing my GuestBlogger, Sean!

So tonight, I'm posting an interveiw with my friend Sean, who has  Primary Lateral Sclerosis (PLS). We met through volunteer work with a Non-profit (Dream Factory-granting dreams to children with disabilities and medication problems) that is based out of Peoria. He's pretty awesome and has a great attitude; hence I want to share with you about Sean!         (picture is at the walk to defeat ALS/PLS)

1. Hi, Sean! Why don't you tell us a little about yourself.

 Hello, I'm Sean Damon and I have PLS "Primary Lateral Sclerosis" I am a 42 year old father to 2 Wonderful boys 9 & 18 and current going through a divorce after 18 years. I am recently Medically Retired Federal Law Enforcement Officer from the US Department of Justice and before that, I was a Professional Recording Artist and still love to play and write when I can.

2. How did you find out you had PLS?

 It took over 4.5 years to get a confirmed diagnosis of PLS by several very experienced Neurologists over the years which included NUMEROUS tests to rule out hundreds of treatable conditions with similar symptoms. Getting the diagnosis was very scary but at the same time, It provided some relief by adding closure to knowing exactly what you have and what to expect in the future with this Disease.

 3. Can you explain what PLS is (for those who aren't familiar)?

Primary lateral sclerosis (PLS) is a rare neuromuscular disease characterized by progressive muscle weakness in the voluntary muscles. PLS belongs to a group of disorders known as motor neuron diseases. Motor neuron diseases develop when the nerve cells that control voluntary muscle movement degenerate and die, causing weakness in the muscles they control. PLS is an Upper Motor Neuron Dominant Disease (which means the Neurons in the Brain degenerate).

The disorder usually begins in the legs, but it may start in the tongue or the hands. Symptoms may include difficulty with balance, weakness and stiffness in the legs, and clumsiness. Other symptoms are spasticity (involuntary muscle contraction due to the stretching of muscle. Muscle contraction is dependent on the velocity of the stretch) in the hands, feet, or legs, foot dragging, and speech and swallowing problems due to involvement of the facial muscles. Breathing may also become compromised in the later stages of the disease, causing those patients who develop ventilatory failure to require noninvasive ventilatory support. Hyperreflexia is another key feature of PLS as seen in patients presenting with the Babinski's sign. Some people develop a condition from the disease Pseudobulbar Palsy and bladder urgency, and occasionally people with PLS experience mild cognitive changes detectable on neuropsychological testing, particularly on measures of executive function.

 4.How has this changed your life and how do you deal with it?

 So far, the disease has progressed slowly which has helped me adapt to the lifestyle changes. problems with balance, pain, muscle spasticity, muscle weakness and slurred speech when tired. Getting up from a seated position has become difficult and I use a cane to get around. I do have a wheelchair to use so I can go out to places that normally require a lot of walking. The muscles fatigue quite easily which causes a high risk of tripping, falling and exhaustion. I've learned to avoid stress, extreme cold or temperature changes and NOT to overdo it with anything! Being stubborn and having a great sense of humor really helps you stay mentally strong and in good positive spirits.

 5. What advances have been made to cure PLS?

 Unfortunately, not too much has been accomplished when it comes to Curing any Motor Neuron Disease. Stem cell research has showed little results, but for now, only medications and therapy can help control some of the symptoms to simply improve the quality of life.

6. Hope can we help?
Anyone can help by learning about Motor Neuron Disease because anyone can be hit with this and knowing about it raises awareness and understanding. With understanding comes acceptance. With awareness, comes a cure: If you would like to know more about PLS :

A page for PLS Awareness has been started on Facebook and can be found HERE (consider "liking" the page!)

More info on PLS found HERE  and HERE!

and if you have any other questions feel free to email me:

Okay, everyone, I hope to spread awareness about ALS, PLS, and Motor Neuron diseases all around! I will be participating in an ALS walk every year, in addition to my 3 CF walks! If you ever want to get involved with any- send me an email! I will just leave you with video clip, to really let it sink in how MND (Motor Neuron Disease) controls the body.

No comments:

Post a Comment