After a long battle with PSP, my mother has gone to a better place. She is at peace.

I will update this website, more often and back track the last four years as well as I can.

Love you Mama.

Mama was admitted to the hospital last night, and is getting ready for her PEG Tube surgery.  The surgery is expected to begin at 1pm, and hopefully shouldnt take more than 15 mins according to the Dr.  I really hope this is a fresh start for mama that will help her with her daily routine, and she can actually enjoy her time with us, rather than eating all day. She was in high spirits last night before leaving to the hospital, and seemed optimistic (as always).  God bless her.

http://en.m.wikipedia.org/wiki/Percutaneous_endoscopic_gastrostomy

“Percutaneous endoscopic gastrostomy is an endoscopic medical procedure in which a tube (PEG tube) is passed into a patient’s stomach through the abdominal wall, most commonly to provide a means of feeding when oral intake is not adequate. The procedure is an alternative to surgical gastrostomy insertion, and does not require a general anesthetic; mild sedation is typically used.”

Yesterday mama told us that she wanted to place a peg tube.  The time it takes her to eat is too time consuming, and tiring.   She has been spending her whole day eating *averaging around 3 hours per meal*.  We listened to her wish and went to her doctor today to discuss the procedure.  The procedure seemed straight forward and according to the dr should take no more than 15 mins but might need to stay in the hospital over night.   We are aiming to do the procedure after eid. 
The dr mentioned that the most important note to be taken is the aftercare.   We have already taken a step and will be hiring a part time nurse to be helping at home with mama. 

Today, thankfully has been a good day for mama overall, she ate well and even said her first word for over 10 days! I was with her and kept telling her how about you say maamaa. .maamaa! And she did it . She said mama, baba, and no. She also took 5 steps (assisted).  So baby steps, but progress.  Thank you god.

Its been about a year and half since i last posted anything here.  It’s mostly been the same routine for mama during the past year or so.  She has her schedule of appointments: 1)Speech Therapy 2) Physiotherapy 3)Occupational Therapy 4)Personal trainer at home and 5)Neurologist.  Usually these kept mama busy and always on top of things, and i think having a busy schedule has really helped her condition maintain itself.

During the past month or so, my family and myself noticed a decline in mamas overall well-being, her meals are taking longer (around 2-3 hours), speech is barely audible, and movement has regressed.  Last week she required a minor procedure (colonoscopy), which needed a full cleansing and flushing of the body’s wastes and toxins.  After the colonoscopy, she has become very tired, weak, and barely moving.  Thankfully shes eating her meals, medicine, and passing stool which is the most important thing as its been causing her difficulty recently.  

God bless mama shes is a strong strong soul, with a huge heart.  Yesterday we celebrated my parents 38th anniversary and she smiled when i reminded her.  Mama always emphasized on special occasions (bday’s, anniversaries, etc).  Thats why i always try to follow her foot steps and whenever there is an occasion I personally take the initiative to make sure everyone is celebrating, because that’s what she would want.  I miss the days she used to call me and nag over and over and over about getting a cake for my brother or sister or wife etc, etc, etc.  She hasnt spoken for over a week and the only way of communication is through hand signals (Thumbs up-Yes or Index Finger -which means no).  Its been tough on all of us, but the good news is that every time i ask if shes in pain, she says no.  She hasnt lost her sense of humor also, this morning i asked her how was ur sleep last night, she pointed her index finger, i asked her why?

1)was the pillow bothering you? Index Finger

2)was the blanket too heavy? Index Finger

3)were you hungry? Index Finger

4)were their loud sounds outside? Index Finger

5)were your pajamas uncomfortable? Index Finger

I ran out of questions so i asked her… Did you miss me?? and She gave me a Big Thumbs Up! 

The past week has been very tiring for all of us, i haven’t slept properly or been myself.  She has a chest appointment now, and another appointment in a few days for Botox (which helps her relieve her muscles and eat better.)  Hopefully, 

Mama we all love you.

A few weeks back on a friday morning, my father called me full of excitement.. he told me that there might be a cure for PSP.  Immediately i logged in to the website that he had done his research on, basically it was a hospital located in Shanghai that specializes in Stem Cell implants, and one of their patients was a PSP patient, whom they saw some good results after the implant.

We contacted the hopsital, and asked some questions, and did our research through other doctors, it seemed to good to be true.  After asking around the majority of Dr’s told us that this kind of treatment hasnt been proved yet in PSP, and could have more negative than positive effects.

It did seem to good to be true… hopefully one day, a treatment will be found.

Some days are good, some days are bad.

Some days you’re in the mood to chit chat, some days you don’t want to look at anyone.

Thankfully, yesterday was a good day.  🙂