About a week ago I went to the urologist, because I have been having some urinary frequency, and difficulty holding my urine in the morning until I get into the bathroom. of course not being able to get into my wheelchair very quickly can make this even more of a challenge. First the nurse asked a bunch of questions, one was how many times do I get up at night I said she (my mom) says once but because I'm on Ambien I don't remember. Had an ultrasound of the kidneys and bladder, which were fine. But while they were looking at that they noticed that I have gallstones. They don't bother me, so nothing needs to be done about that. Anyway, the main reasons I’m writing this post is to make A-T parents aware of gallstones and overactive bladder are possible at a young age. He was thinking about puting me on meds for my bladder but he said its not worth the side effects. One thing we liked about this doctor is he took the time while we were in the office to look up A-T, he actually admitted he had never heard about it, how about that a doctor who admits he doesn't know everything.
PS- I just started wearing protection at night.
Monday, September 5, 2011
Saturday, August 27, 2011
Having A-T is so frustrating
Having A-T is so frustrating. My back is starting to hurt alot more, my tremors are getting alot worse, I'm falling alot more, and its getting tiring just to get dressed. I cant sit at the computer and dinner table for long periods of time any more. Also my tremors are so bad I need help feeding myself and taking my pills sometimes.Also my taste buds are starting to get very sensitive I cant enjoy some of my favorite foods anymore BBQ sauce, french dressing, chili anything with pepper. (basically anything with any kind of seasoning)
Tuesday, June 21, 2011
bathroom lock in
The other day I was locked in the bathroom. I tried turning the dial like thing on knob to unlock it a few times but it was jammed. My dad tried using all differant screw drivers and he even tried his eye glass tools. Finally he got it loose enough I could unlock the door.
Tuesday, June 14, 2011
QnA 1
I just revived an email with a couple questions.
I was wondering if you hurt any? I often wonder this about my daughter. She seems to be able to take pain quite well. I just dont want her to be hurting and me not know it. She also stays she's hungry 24/7. I havent been able to get het to Johns Hopkins yet to ask them these questions.
This is Courtney's mom, Cheryl, it's difficult for her to type, so I'll handle your questions, feel free to ask me anything, if it's something she has experienced, we'll me more thean happy to share her experiences. When Coutney was younger, she never felt any kind of pain, I don't know how advanced your daughter's AT is, but Court was still walking short distances until she was about 11 or 12. She does have pain now, mostly from her back and neck, with the progressing muscle weakness, sitting in a wheelchair, can cause some wear & tear..Years ago when we went to JHopkins, she was about 9-10 they told us that her tremors required a lot of calories, she is 5 feet and 87 lbs. She can eat like a horse sometimes, but has not gained weight since she was about 10. She can be a slow eater because of muscle weakness, and the time it can take her to eat, That probably keeps her weight down too. Spicy food bothers her, her mouth seems to get more sensitive as she has gotten older. She doesn't even like if I put a little pepper on food. She was told not to drink with straws, be cause of the weakness of their muscles, this can cause aspiration. She uses cups with tops that she tilts her back back to drink, as that action can help prevent aspiration. Also to help prevent aspiration we use SimplyThick.
I was wondering if you hurt any? I often wonder this about my daughter. She seems to be able to take pain quite well. I just dont want her to be hurting and me not know it. She also stays she's hungry 24/7. I havent been able to get het to Johns Hopkins yet to ask them these questions.
This is Courtney's mom, Cheryl, it's difficult for her to type, so I'll handle your questions, feel free to ask me anything, if it's something she has experienced, we'll me more thean happy to share her experiences. When Coutney was younger, she never felt any kind of pain, I don't know how advanced your daughter's AT is, but Court was still walking short distances until she was about 11 or 12. She does have pain now, mostly from her back and neck, with the progressing muscle weakness, sitting in a wheelchair, can cause some wear & tear..Years ago when we went to JHopkins, she was about 9-10 they told us that her tremors required a lot of calories, she is 5 feet and 87 lbs. She can eat like a horse sometimes, but has not gained weight since she was about 10. She can be a slow eater because of muscle weakness, and the time it can take her to eat, That probably keeps her weight down too. Spicy food bothers her, her mouth seems to get more sensitive as she has gotten older. She doesn't even like if I put a little pepper on food. She was told not to drink with straws, be cause of the weakness of their muscles, this can cause aspiration. She uses cups with tops that she tilts her back back to drink, as that action can help prevent aspiration. Also to help prevent aspiration we use SimplyThick.
Wednesday, May 4, 2011
tremors
I've had a couple moms ask me what kind of meds I'm on for my tremors. Since middle school Ive been taking Neurontin for my unintentional tremors (when you get tremors for no reason), truly I couldn't imagine my life without it. Now I'm also taking Propranolol for my intentional tremors (when you get tremors while trying to do something) that helps too.
If anyone has a question about a post or my A-T in general I'll try my be st to answer, it may even become the topic of a new post
If anyone has a question about a post or my A-T in general I'll try my be st to answer, it may even become the topic of a new post
Saturday, March 12, 2011
coupons
About a week ago I registered with couponmom.com they have hundreds of great coupons. Sunday morning they sent an email from I got Arnold's bread, Garnier, L'OREAL, Jimmy Dean, Pedigree, Pillsbury and General Mills coupons just to name a few. For more info. go to http://www.youtube.com/results?search_query=couponmom&aq=f
Wednesday, January 5, 2011
Biggest Loser commercial
My mom and I were watching The Biggest Loser and a commercial with Ben Affleck came on. Ben asked people to pledge to lose weight, after the commercial we joked about it. (here's our conversation)
mom; I'll pledge 13 pounds that how much more I want to lose. Court; If I lost 13 pounds I 'd be dead.
mom; you should make a pledge to gain weigth.
Court; ok I'll pledge to gain 13 pounds if I could meet Ben and Jen Affleck
The reason I want to meet them is to thank them (if your family has A-T you should know what for). And ever since I heard about their involvement I became a big fan of Ben and Jen
mom; I'll pledge 13 pounds that how much more I want to lose. Court; If I lost 13 pounds I 'd be dead.
mom; you should make a pledge to gain weigth.
Court; ok I'll pledge to gain 13 pounds if I could meet Ben and Jen Affleck
The reason I want to meet them is to thank them (if your family has A-T you should know what for). And ever since I heard about their involvement I became a big fan of Ben and Jen
Saturday, January 1, 2011
rehab
Im a shy and quiet person, but I love to have fun and party. So for a 28 year old partying means drinking. So my cousin Jessica and I joke about going into rehab together, but I rarely ever drink cause it takes me about 3 or 4 shots to feel the effects.
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