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.
At 930am this morning my mother’s help called me panicking saying that she’s not feeling well and has a fever. I ran downstairs to see mom in her wheel chair soaked in sweat and breathing very heavly, I immediately checked her blood pressure and blood oxygen levels only to see her BP was around 200/130 !! I callled the paramedics to ask for assistance and they advised me to let her rest at 45 degrees and legs straight. Thankfully it helped and her BP went to normal levels, once they arrived and did a full check up said she seems fine and the only explanation is either 1.lack of sleep 2. Stress 3. Food. He also recommended we do a kidney and liver check up just to make sure everything is fine. Thankfully her condition stabilized a bit and she had her breakfast and is resting now. Its been a really rough morning. . .
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.
One of the biggest differences between psp patients and alzheimers is that when they lose balance. psp patients tend to fall backwards. . straight on their back. While alzheimers fall flat on their face. Its been about two years that my mother has needed full time assistance, thankfully we have had one helper during that period. Recently there is a new helper, and yesterday mama fell for the first time, thankfully it wasnt bad.
The funny part is that, while watching a football game my mom started giggling uncontrollably, i asked her whats so funny? She mumbled to me, “im lauging at when i fell yesterday” i was like . Hmm mama thats not funny, she looked at me and mumbled ” the new nanny fell on me too! ” lol, she then joked that her helper needs her own help, hehehe. My mom always had a wicked sense of humor, even with psp.
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.
Yesterday was my four year anniversary.. and i just realized how much has happened in four years. Im happily married to the best wife in the world, I have a wonderful baby girl that is 1 year and 10 months, lots of nanny drama around the house, took numerous trips all around the world.. thankfully iv’e done a lot in the last four years..
While looking at my wedding pictures, i saw my mother in many of them, and all i could say to myself was…wow…four years have changed a lot for my mother, she can barely walk,talk, and write now. During my wedding i remember she was walking (semi-assisted), and there was another picture that she was writing in our wedding journal, and standing alone (something she couldn’t do now).
Its been up and down the past four years, but in the end i’m grateful for every moment we get to share with mama, her happiness and comfort is always our top priority.
The past two months have been full of mixed emotions. I had taken my annual trip to beirut, where i was planning on going for two weeks. After about 10 days, i got a call from my father saying that my Grandfather passed away. He was an old man (90+) therefore we all knew his day would come soon. My first reaction was to ask about mama, and how she was handling it. My family told me she was crying when she first found out, and within a few hours was okay as if nothing happened. We all then met up in Cairo the next day, thankfully mama was doing okay, shes a strong woman. But we noticed that her speech was effected. Its now July 27, almost a month and a half after my grandfather passed away, and mama is finally coming back to Kuwait . . she just called me from the airplane when she landed, the sad thing is that she could barely speak, but i knew she was on the line so i was doing all the talking. . .
So Sad. PSP has really gotten a strong grip on mama, and doesn’t want to let go. . .
God Bless Her.
progressive supranuclear palsy 