The Little Girl Down the Street

Maisie and Yoda Beth

My granddaughter Maisie visited us  over the Memorial Day weekend.  I had wanted her to meet several of the kids in the neighborhood, but people were busy or out of town.  Maisie ended up spending her time with Yoda Beth, our Calico cat and Skye, the border collie.

Maisie was riding her trike on the sidewalk, when Skye took off running down the street.  Haleigh, 5 yrs, who lives across the street, took off running after her. "I'll catch her!", she yelled.  In a minute Haleigh and Skye both arrived  on the porch out of breath.  Maisie was thrilled to have another little girl around, and asked her if she could play.  Haleigh had just gotten out of the pool and was wearing her swimsuit, holding what looked like dance clothes.  I asked her, "Do you have dance in a few miniutes?" 

She shook her head no, as she started to put on the clothes she was holding.  Over the swimsuit went her leggings, then her pink tutu.  Seeing the leotard still on the ground, I asked,  "Aren't you putting them on in the wrong order?"  Again she shook her head no, then said, "Oh watch, it will all work out." 

Then on top of the swimsuit, leggings and tutu, she slipped the leotard over the top of everything, with a slight bulge from the tutu around her waist.  Then off she and Maisie went down the sidewalk--guess it did "Work out."   

:)

Long Time

It has been such a long time since I posted.  I am sure everyone thought I had closed up shop, but no I have not.   We have had a busy spring with Jim's Deep Brain Stimulation Surgery on the left side of his brain.  It went well with him coming home one day later.  He had the priviledge, two weeks later, of speaking to the Early Onset Parkinson's Disease yearly meeting.

He was able to turn off both stimulators and show the group what his life would be like without the implants.  The difference in amazing.  After speaking, during the break, a line of people met him in the lobby to ask questions.  PD patients can literally be given their life back with this procedure.  It is not a cure, only a coping mechanisim.

Many people are intimidated by the surgery because the surgeon goes into the brain, while the patient is awake, a very unnerving thought indeed.  I think I was more afraid of the surgery than was Jim.  It gives the patient the ability to continue to walk unassisted, to feed themselves, to have some relief from the constant cramping which is so exhausting and to live a somewhat normal life.  The life of a PD patient however is far from normal.

When Jim was diagnosed, finally in 2000, we were told, "A cure is five years away."  And hopfully now 11 years later, it is only five years away.

Parkinson's Awareness Month

The picture above is the symbol for Parkinson's Awareness (PD).  It is only fitting that in Parkinson's Awareness Month Jim is having his 2nd Deep Brain Stimulation surgery.  His tremor started out on the right side.   He had DBS done in 2006.  It, along with medication controls the symptoms, allowing him to write, drive, feed himself and do the other neccessities of life.  Another tremor has now started on the left side.  since he is right handed he was able to put this surgery off, however the cramping that goes along with the tremor has become too distracting.

I am consatantly bombarded with people wanting me to donated to the Heart association, Breast Cancer research MS and many others, how long will it take for people to have an awareness of Parkinson's?  This disease  it like being slowly tortured over a period of as long as 30 years.  Imganie if you were to do isometric exercises 24/7 how you would feel--that is what many PD patients have to contend with.

PD is when the dopamine producing cells of the brain start to die.  By the time a person is diagnosed with PD they have already lost up to one third of these precious cells.  PD, although not believed to be hereditary, does tend to run in some families.  The weakness is in the body and it waits until it has a trigger to start the disease.

In Jim's case there are no family members who had the disease.  While putting himself though college he worked one summer at the Diamond Shamrock plant in Pasadena, Texas.  He was put down into a storage tank with oxgen and protective garments to clean it.  He was monitored on a regular basis for chemical poisoning.  When he tested positive for Mercury poisoning they put him on another job.  I wonder why he wasn't taken off that job before he tested positive?  Or why didn't they provide him with medical support for the future if he did develop any debilitaing effects from the poisoning?

Every PD patient, although suffering from the loss of the same type of cells, has a unique reaction to the loss.  Some have what is called freezing, where they take a step and cannot stop the forward motion, some have tremors, and some have both.  DBS does not help those whose symtoms are slowness of movement and freezing.  DBS also does not cure or stop the progression of the disease.  It continues to progress and debilitate.  When Jim was diagnosed 16 years ago, I asked the doctor, "How soon will there be a cure?"  He told me it was about 5 years away.  When Jim had his DBS in 2006, the answer was the same.  And now 16 years later there still in no cure.  No one cares until it affects them or their family.