Parkinsons’s Awareness month is April.

Hey y’all, for those that read my blog, I’m sorry if this first part is a no brainer. 

My name is Joanne aka as Camsgranny, I am the daughter of a Parkinson’s patient.  My Momma was diagnosed with Parkinson’s about 4-7 years ago, it is really unclear at the time, because she was mis-diagnosed several times.

So what is Parkinson’s?  The official definition is it is a chronic and progressive movement disorder that involves the malfunction and death of vital nerve cells in the brain, called neurons.  Some of these dying neurons produce dopamine, a chemical that sends messages to the part of the brain that controls movement and coordination.  As Parkinson’s progresses, the amount of dopamine produced in the brain decreases, leaving a person unable to control movement normally.

Over the year’s I have done a lot of research on the topic, simply because I had no idea what the Farmer (My Dad) and I were looking at.  Momma has gone through a progression of symptoms. 

The Farmer and I are her main Caretakers.  In recent events where things had gotten pretty bad and Momma was in ICU for about 1 1/2 weeks, and then sufficiently recovered to go to a Nursing home and she participated in TONS of therapy.  Momma is now at home, and we have some people come  in and assist us with her home life.

Through my blog I have met some other people who, while are not in MY shoes, they are in their own shoes. Spouses, Sons, and some really young people who have been diagnosed with this disease.

The biggest thing about this disease, is that it affects everyone differently. Parkinson’s Disease is a neurological disorder.  The cause is not known.  It is also not necessarily an inherited disease.  Researchers have found that people with an affected first-degree relative, such as a parent or siblings, have a four to nine percent higher chance of developing PD, as compared to the general population.

How many people have Parkinson’s?  To me the number is staggering.  An estimated seven to 10 million people worldwide live with Parkinson’s.  In the United States alone, as many as one million individuals live with PD, which is more than the combined number of people diagnosed with multiple sclerosis, muscular dystrophy and Lou Gehrig’s disease.  Approximately 60,000 Americans are diagnosed with Parkinson’s each year, and this number does not reflect the thousands of cases that go undetected.  Incidence of Parkinson’s increase with age, but an estimated four percent of people are diagnosed before the age of 50. Statistics have also shown that men are slightly more likely to have Parkinson’s than women.  (Someone forgot to send THAT memo to Momma).

Parkinson’s does not have a cure.  It is mainly controlled with medication.  Levodopa is the most widely prescribed medication, with often several other medications to manage the disease.

The symptoms vary from person to person, but there are four key motor symptoms.  Tremors in the hands, arms, legs or jaw; muscle rigidity or stiffness of limbs and trunk; slowness of movement (bradykinesia); postural instability (impaired balance and coordination). (I’ve seen this one first hand).  Other common symptoms may include pain; dementia or confusion, fatigue, sleep disturbances; depression; constipation; cognitive changes; fear or anxiety; and urinary problems.

The next question (at least to me) is Can people die from Parkinson’s?  Parkinson’s is a progressive disorder, and although it is not considered to be a fatal disease, symptoms do worsen over time and  make life difficult. People with Parkinson’s experience a significantly decreased quality of life and are often unable to perform daily life activities. (In our case, Momma is unable to get out of bed, nor perform bathing, getting dressed or walk without assistance.  She is also no longer able to swallow, and has a feeding tube that was surgically put in her stomach for her to get a food supplement and also all of her medications. ) There is a progression of the disabling symptoms.  People have died from Parkinson’s related complications, such a pneumonia.

While some may look at Momma’s circumstance and say that’s not a life, believe me, she has days that she will charm the socks off you, and is the life of the party.  But we also have days where Parkinson’s grips her and it gets rough.

This is the Parkinson’s Awareness quilt. What is the Parkinson’s Quilt?

The Parkinson’s Quilt Project is the first global quilt project to focus the world’s attention on the nearly one million people in the US and seven to 10 million people worldwide living with Parkinson’s.  The project aims to raise awareness of the impact that the disease has on people living with Parkinson’s – along with their families, caregivers and friends – and on our continued urgency to find a cure.

Over the past year, more than 600 people created quilt panels, each of which measures 2’ by 2’.  Panels include photos, illustrations and items that express each quilter’s experience with PD. 

After finding out that April is Parkinson’s Awareness month (ok, I may be a little late but someone forgot to send ME the memo).  I am trying to raise awareness for this nasty disease.  I’ve experienced it first hand, as the Caretaker of my Momma.  Somedays are frustrating, some days are outstanding.  It wears on you at times.  Somedays you want to throw your hands in the air and say I give.  But then you look at the person suffering from this disease, and you realize, if I feel like this, I can’t imagine how they feel.    Momma has expressed her feelings to me, and sometimes it’s painful to remember these conversations.  She is scared, terrified, frustrated, depressed, sad, mad.  She has good days, and bad days.  But then out of the blue, she comes around and it’s kinda like it was in the days pre-Parkinson’s, and we laugh and giggle and she’s full of piss and vinegar.  But folks, that’s My Momma, and the Farmer and I are in this for the long haul.

 

 

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