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Monday, May 20, 2013

I can hear !

I'M SORRY - OK?

I know . . . I haven't written since the end of March and I've heard plenty about my dereliction of duty. For a while I didn't think I had anything new to report here. I repent - for now.

During my clinic visit in February, Dr. Bromberg asked me if I was sleeping through the night. I told him that I wake up two or three times each night because I need to pee. He said something like, "You think you need to pee, but if you weren't waking up you wouldn't know you needed to pee." I'm like, "Huh?" I mean, I think I know when I need to pee. I figured that guys over 60 just need to pee more often. He went on to explain that I could be waking up because my oxygen level decreases at different times during the night. Then, because I wake up, I say to myself, "Oops - gotta pee." I asked, "Are you saying that I have sleep apnea?" He said, "It is a possibility." I'm like, "Hey, according to Gerrí, I don't even snore, and I'm skinnier now than I have been for 20 years." I thought that sleep apnea was something that overweight snorers get. He said that he was going to order a pulse oximeter test for me.

So eventually a guy showed up at my door with this little doohicky that I put around my wrist like a watch. It has a connection from the thing on my wrist to one of those things that they clip on your finger when you go to the doctor for a checkup. It measures pulse and oxygen levels and records them in the little wrist thingy. So, I slept one night with the pulse oximeter and the same guy showed up the next day and picked it up. About a week later I got a call from the ALS Clinic. They told me that my test showed a problem and that they wanted me to spend the night at the University of Utah Sleep/Wake Clinic. (Why don't they just call it the Sleep Clinic. Isn't it obvious that if you aren't asleep - you are awake?) So, a couple of weeks later, I spent the night up there.

The tech person at the Sleep/Wake Clinic, hooked me up to a whole bunch of wires - on my head, by my eyes, on my chin, on my chest and tummy, on my legs and arms, etc. I was wondering if they really expected me to sleep with all this stuff. But, sure enough I fell asleep, but not for long. About an hour later they woke me up (what the heck?) and put a mask over my nose and mouth connected to a bi-level positive airway pressure (BPAP) machine. Now I knew that I wasn't going to sleep with that thing blowing air into my nose and mouth - but wrong again, I slept through the night without getting up to pee. Interesting. They woke me up at 6:30 a.m. (what the heck again) and sent me home.

Later that week, the pulse oximeter guy showed up at my house and delivered a BPAP machine and taught me how to use it.

Eventually, I learned that my oxygen levels were fine until I entered the REM (Rapid Eye Movement) sleep state. During REM your brain acts like you are awake, but your muscles are very relaxed. Apparently, my ALS mouth and throat muscles were relaxing enough to constrict my airway. Then the oxygen level was dropping from near 90% to about 65%. And guess how many times during the night. Yup - 3 times.

So I have been using the BPAP every night, and I don't wake up to pee. Dr. Bromberg is a pretty smart guy.

My speech continues to get worse. I'm using my little white board and dry-erase markers all the time now. If I'm on the phone, which I try to avoid, I use the "Speak It" program on my iPad. So, last week (May 13) I had a follow-up appointment at the Sleep/Wake Clinic. I approached the reception desk and told the person there, "I'm Kevin Taylor and I have an 11:00 appointment with Dr. Sandar." (At least that is what it sounded like in my head.) The reception person looked at me like I was speaking a language not found on this planet. So, I wrote down what I was trying to say on the little white board. I showed it to her, and she took the white board and marker from me. (First time that has happend.) She wrote a bunch of stuff on it, which turned out to be instructions on how to fill out three forms. She smiled and gave it back to me. I read the instructions then erased the board and wrote in big letters, "I can hear." She was a little embarrassed but we both got a good laugh out of that.

That was the first time that I realized that I could be mistaken for a deaf person. But since then, I've noticed that some people speak louder to me than they otherwise would. And some people talk to me like I'm about four years old. Interesting. My ears and brain are in good working order (I think) but when you talk funny some people assume stuff.

One other thing to report and I will finish this. I am no longer putting any food or beverages in my mouth. I am taking 100% of my nourishment through the PEG feeding tube. No food - not even Haagen Das Chocolate Chocolate Chip ice cream. When people hear this they tell me how sorry they are for me. But honestly, I don't miss it. You may not believe me, but it is true. Eating became such a chore. I got so that I was choking on stuff and coughing and coughing and coughing. It would really wear me out. I really am fine not putting food in my mouth. I think it is harder for some people to eat when I'm there because they assume I feel bad.

OK! That's it for now. I need to write about some experiences that we have had around the house and on a road trip to San Diego.  Our last ALS Clinic day was last week so I need to update you on what Gerrí and I learned there.  I won't let two months pass before I write about this stuff.

9 comments:

  1. I love reading you blog.....I can hear you in my head. I miss you guys! All my love, amy

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  2. Kevin, your experiences are so inspiring! Thanks for sharing them and for being amazing!

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  3. Thanks for sharing! You are in our thoughts at prayers. (Matt, Noriko, and the gang)

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  4. Kevin, you are my hero. But then, you always were my hero!

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  5. Hey Kev!!! I'm glad you updated your blog. The BPAP story was pretty interesting - I have a friend whose dad refused to use the equipment like he was supposed to, and had a minor heart attack.. (different issue, but needs oxygen.. ) I knew exactly what you were talking about!
    I love you tons!
    Terry

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  6. I just want to share my story so i can reach out to others. My mom was diagnosed with ALS (Lou gehrig's disease) in the summer of 2013. She is my best friend and all i have got in this world. And I was scared because when the doctor told me about how deadly this disease is i could not help but cry. She suffered all through the time, she could no longer walk as all her bones were weak, speak or even eat, this were years of torment as i have never seen anything like it or ever been so scared in my life and i wept as the days go by. We tried several drugs like Riluzole, and various therapy that was prescribed by the doctor but it came out even worse as she became very thin. She is 65 years old. I actually thought i was going to loose her after all i have spent. I was in church one day when a fellow in the christian faith told me about a doctor who has a cure and that this doctor had cured a colleague she knew suffered from ALS, i was in shock and recalled the doctor once told me there was no cure, she gave me the doctor's contact and i contacted him and told him all we have been through and he told me about his very effective herbal medicine that treats it permanently, though at that time i did not believe but i wanted my mom to be okay again so i decided to give a try and he sent me the medicine which i gave her as instructed by the doctor. In a month time i was amazed at the improvement and by the second month she was completely okay, during all these times she did not experience any side effects. To confirm all these we went back to the doctor to confirm, he ran all the tests and found no trace of ALS in her again. Today my mom can run, jog, eat and speak fine without any assistance currently she is baby sitting my daughter and till now she is still very strong. If you are suffering from ALS (Lou gehrig's disease) do not die in silence because there is still hope for you. Contact the doctor on (josephalberteo@gmail.com) i am very sure he can help you too.

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  7. MUST READ: HOW I GOT CURED FROM ALS DISEASE) I am from U.S.A and my name is Clara Wilson. I was diagnosed of ALS disease (Lou Gehrig’s disease) in 2013 and I have tried all I can to get cured but all to no avail, my life was gradually coming to an end, until i saw a post in a health forum about a herbal doctor from Africa who prepares herbal cure to cure HIV/AIDS and all kind of diseases including ALS, MND, Epilepsy, Leukemia, Asthma, Cancer, Gonorrhea etc, at first i doubted if it was real but decided to give it a try, when i contact this herbal doctor via his email,(dr.ezomorootandherbals@gmail.com), he prepared an ALS herbal portion and sent it to me via courier service, when i received this herbal portion, he gave me step by step instructions on how to apply it, when i applied it as instructed, i was cured of this deadly disease within 7 days, I could not walk or talk understandably before but after i took the herbal cure as he instructed i regained strength in my bones and i could talk properly unlike before, I am now free from the deadly disease, all thanks to Dr.ezomo Contact this great herbal doctor via his email dr.ezomorootandherbals@gmail.com

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  8. I Am Jessica, I want to quickly write on a Powerful herbal cure doctor, who is well known around the world for his cures and help to humanity, This man helped me when i had the Lou Gehrig’s Disease ( ALS ). i and my family tried all possible best some few years back to get a cure for my dying husband who was also an ALS victim, but all our efforts came to nothing on a Friday night when we lost him to death. The same virus came on me some 3 months after the death of my husband, i tried all i could untill i came in contact with DR Camala in 14-6-2014. I went to collect my weekly treatment on the hospital which Dr Camala was invited to inspect some patients, i was upportuned to be inspected by him on his own free will. After the inspection, he gave me his Emails:( dr.camalahivaidscure@yahoo.com ) and his mobile number and ask my eldest son to help me get to him which we really did. We emailed him and he got back to us, in just 3 days of negotiations he sent me some herbal cure medicine and instructed me on how to take them. i remember taken the medicine for just 2 weeks, then i started receiving results. I am happy to say now that for the pass 1 year i have had no symptoms of the sickness and i have been totally and finally cured of ALS with no trace of the virus in my body ( laboratory scan and medical doctors checkup has reveled so) Am so happy and i want to thank Dr Camala for his help on me. i want whoever that is also with this virus to get the quickest and most assured cure immediately through the help of Dr.Camala on
    dr.camalahivaidscure@yahoo.com or call him +2349055637784.

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  9. As a sign of gratitude for how my husband was saved from ALS, i decided to reach out to those still suffering from this.
    My husband was diagnosed of ALS in 2013 and it was really tough and heartbreaking for me because he was my all and the symptoms were terrible, he always have trouble swallowing , and he always complain of Weakness of the body . we tried various therapies prescribed by our neurologist but none could cure him. I searched for a cure and i saw a testimony by someone who was cured and so many other with similar body problem, and he left the contact of the doctor who had the cure to ALS. I never imagined ALS has a natural cure not until i contacted him and he assured me my husband will be fine. I got the herbal medication he recommended and my husband used it and in one months he was fully okay even up till this moment he is so full of life. ALS has a cure and it is a herbal cure contact the doctor for more info on drwilliams098675@gmail.com on how to get the medication. Thanks for reading my testimony.

    ReplyDelete

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