UPDATE:

I just realised i posted before updating about the peg tube, what happened was that the day of mama’s appointment she decided she doesnt want to go ahead with it, and my father agreed with her.  Thankfully, the choking has reduced and it appears that we have won some time to postpone the peg.

————————————————————————————————-

The time has come for mama to insert a peg tube for feeding,  The thought of it has never crossed our minds until recently.  Her appointment is on June 1, 2011.

Mama is the one who is insisting on getting the tube as she has gotten more and more frustrated with the choking while she eats, takes her medicines, and drinks.

The two videos below best explain the insertion process, and what we should expect with the feeding.

http://www.youtube.com/watch?v

=atQGkK0zW2s&feature=youtube_gdata_player

http://www.youtube.com/watch?v=S6WcyZh6z0Y&feature=youtube_gdata_player

God bless you mama, you are a strong woman.

One of mama’s dr’s recommended botox as a treatment ,  he said it will help with the drooling, as her mouth shouldnt be as droopy, and also will relax her neck muscles and frown looking face.

Yesterday she had her first botox session, and thankfully says she already feels more comfortable, especially in her neck.

Its the small psychological things, that help the most. . .The doctor has also recommend a peg tube for feeding, which unlike botox will be more drastic, and will be a lifestyle change. . . More on that in another post.

Progressive supranuclear palsy (PSP) is a neurodegenerative brain disease that has no known cause, treatment or cure. It affects nerve cells that control walking, balance, mobility, vision, speech, and swallowing. Five to six people per 100,000 will develop PSP.

Symptoms begin, on average, when an individual is in the early 60’s, but may start as early as in the 40’s. PSP is slightly more common in men than women, but PSP has no known geographical, occupational or racial preference.

PSP displays a wide range of symptoms including:

• Loss of balance.

• Changes in personality such as a loss of interest in ordinary, pleasurable activities or increased irritability.

• Weakness of eye movements, especially in the downward direction.

• Weakened movements of the mouth, tongue and throat.

• Slurred speech.

• Difficulty swallowing.

  -With PSP, some people get a few of the above mentioned symptoms, yet in mama’s case its clear that she has all of the symptoms.

  -God bless her.

  http://www.psp.org/about/

de·ter·mined/diˈtərmind/Adjective

Mama, being the oldest of four sisters would always have a “god” mother role in our family. She was a stastics major in university, and has always been good with numbers. Being a housewife, she would take us and pick us up from school every day for eighteen years,in addition to taking care of the house,making sure lunch was ready, and helping us with our home work. She would also drop us off and pick us up from our friends on the weekend. Superman wouldve been proud of her. . The things she did for us, we only realized and appreciated it when we had our own kids.

She was never a ‘socialite’ but had a strong relationship with a handful of people, and this was mainly due to the fact she lived abroad from marriage until 1988. During the invasion, my father was stuck in kuwait for over two weeks. We were in cairo with mama, and didnt have any form of communication with him, she still managed to enrol us into a top school and made sure our education wasnt halted.

Mama was and still is a very determined and strong willed person. Thats definately a trait i hope i get from her.

Maybe i shouldve had this as my first post, but the point of this website will be to post random things about mama and her fight with psp, and also to explain it better to family and friends. Your comments and feedback is highly appreciated.

From wikipedia. . “Progressive supranuclear palsy (PSP) (or the Steele-Richardson-Olszewski syndrome, after the Canadian physicians who described it in 1963) is a rare degenerative disease involving the gradual deterioration of selected areas of the brain.”

It all started over ten years ago, my mother who was in her mid forties began changing quickly. The summer im referring to is still in the back of my head, she would get angry all of a sudden and would get quick mood swings, we all noticed it. The first thing that came to mind was, ” yeahh shes going through menopause, its just a phase”.

This phase, lasted a few years. . And it was difficult for the whole family, our caring and loving mother turned into a different person. A person, who didnt show interest in the things that mattered before, a person who didnt want to socialize as she did before. It was the beginning of psp, the signs were there, but even the best doctors couldnt pinpoint it until 7 years later.

That summer was when we realized mama would never be the same again. . .