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. . .
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.
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.
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.
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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:
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Loss of balance.
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Changes in personality such as a loss of interest in ordinary, pleasurable activities or increased irritability.
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Weakness of eye movements, especially in the downward direction.
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Weakened movements of the mouth, tongue and throat.
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Slurred speech.
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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.
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.
progressive supranuclear palsy 