Thank you camachinist

ChattyKathy4 · 11-23-2003, 09:53 AM

Dear Pat,
Thank you for the article. It was hard to read but really made me realize I need to have another opinion. I am going to ask for an MRI to be done as all I have is a cat scan that was done 10 months ago. I don't have most of the symptoms that go with this disease, even the doctor admitted that. I also read that this disease is often misdiagnosed and that concerns me too. I am a widow and live alone, so I really need to know for sure if this diagnosis is correct. I have 3 grown children who are very upset as we are a very close family. I will look further into this to get some definitive answers, and want to thank you for taking the time to reply to me. It was very kind of you. Thank you.
Kathy

camachinist · 11-24-2003, 12:42 AM

Hi Kathy,
You're quite welcome.....research has been my defense weapon in understanding my mom's disease better and pushing for appropriate diagnosis and treatment. It's an ongoing battle, in that medical professionals are increasingly harried and rushed and aren't able to spend the necessary time both with the patient and in research of their dx. I've often had to print out reports and and suggest things to the doctors to bring them up to speed on the latest information, which many don't have time to pursue.

IMO, if you live alone and your children are a good distance away, you should recruit a support network now, while you are in relatively good health and mind. There's nothing worse than being alone and in trouble. My mom is a half hour away by car and that's about as far as I'd want to be from someone in her shape (or possibly your shape in the future) living independently. She has part time care but lives alone most of the time.

If you need any assistance with the little things of making independent living easier, feel free to ask. I've done an enormous amount of research and have turned our doctors on to many new assistive procedures and devices I've developed and discovered for my mom.

I'll discuss them to the extent that's allowed here, as I've been in trouble regarding that in the past (inadvertently).

Good luck and best wishes!

Pat

ChattyKathy4 · 11-24-2003, 09:52 AM

Thanks again, Pat. How sweet of you to offer assistance! My daughter lives only 1 street away from me, and calls me every day. She is also busy raising 3 teenagers, so I try to ask for as little as possible, because I know the day will come that I will need more help. I have 2 sons, one lives near and the other one about 30 miles from here. They are also busy raising children. My daughter is my real support. The boys care, but I think do not want to accept this and it is hard for them because I am still very sharp and function independently. I am going to call the doctor who diagnosed me today and see if she will order an MRI of the brain to compare to the cat scan I have from 10 months ago just to be certain. It just seems so hard for me to believe that I could have something this awful because I am not showing any of the symptoms of it yet. Memory is my worst problem in that I don't process information properly that is given to me such as learning something new. If another test proves that I do in fact have this disease then with the help of the good Lord, I will deal with it somehow. I will keep you posted if that is all right. Thanks again for caring. It means a lot and I hope your Mom stays well for a long, long time.
Kathy

camachinist · 11-24-2003, 12:17 PM

Sounds like, with the kids close by, you should be fine. Look at it this way....you're cognition is good enough that you understand what might be happening to you and can get on the computer and express that information to others. Any and all of that is lost upon my mother and she still lives independently. You've got a long way to go, if at all, before you become a burden on your children.

IMO, catching the process early and staying as healthy as possible is the best way to ensure the best possible quality of life for you. I'm glad it appears you will catch this, if it is a brain disease and not something simpler, early.

Have you ever had thyroid issues?

Pat