pakeener
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If God allows me to, I will celebrate my 64th birthday on August 1st and my 43rd wedding anniversary on August 25th.
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My neurologist prescribed Scopolamine patches. They were actually working but after using only 2 patches, my husband insisted that I no longer use them. They caused me to have psychotic behavior. I rambled all night long, thought that people were in my home that were not, and my personality was totally changed. My husband had to watch me all night long due to fearing that I might walk out of the house in the middle of the night. I think the straw that broke the camel’s back was when we awoke one morning and I had put my pajama top on backwards. Overall, I can say that it was a short experience but not a very good experience.
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I am grateful that I have not lost the ability to communicate, walk or take care of my personal needs. I’m also thankful that I am able to continue driving at this time. I thank God daily for things being as well as they are!
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I was seeing a neurologist who could not diagnose my case and was referred to a large medical center in Texas. It took three months to get an appointment with the neurologist there and it was a video visit. About three months later, I went for an EMG followed by another video visit.
The doctor said, “You have ALS. You need to get a port put in”. She then proceeded to ask me who I live with. I told her that I live with my husband. She asked, is he in good shape, to which I answered yes. She then said good, because he’s going to have to take care of you.
Needless to say, I was crushed just by hearing the word ALS! Her lack of empathy was totally inexcusable! I immediately decided to go for a second opinion. My husband and I traveled to Minnesota to the Mayo Clinic in Rochester. Even though the diagnosis was confirmed, the doctor who spoke to us was very empathetic. He answered any questions we had and genuinely seemed concerned. We were also able to meet with a multidisciplinary team that addressed all aspects of ALS.
We were so pleased with the compassion shown there and the comprehensive evaluation of all aspects of ALS, that I will travel to Minnesota for my appointments every three months as long as my health allows me to do so.
My initial diagnosis on July 30 was totally heartbreaking. I am so thankful that I was able to go to the Mayo Clinic for a second opinion.
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Thank you, Gail for your input. I take Glycopyrrolate and have both machines. I have an appointment with my ALS team on September 1. I will most definitely ask for anything that might give me some relief.
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Thanks, Debbie. I have and use a cough assist device and suction machine.
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Thank you Bill! I will look into seeing if I can possibly get a prescription for ipratropium bromide.
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Thank you!
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John, thanks for sharing this information. It gives me a little hope knowing that some ALS patients can continue to be mobile for 16 years. One of the biggest fears about this disease is the fear of the unknown!