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Old 06-27-2013, 12:27 PM #23
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AynaDee AynaDee is offline
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Join Date: Jul 2010
Location: Illinois
Posts: 266
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AynaDee AynaDee is offline
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Join Date: Jul 2010
Location: Illinois
Posts: 266
10 yr Member
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EricP-- I should probably be using a cane at least. My doctor has written on all my stuff to send a wheelchair down for me, but I refuse it.

I feel (which is probably kinda crazy) that a device will enable this disease to take over. I use what I can. The walls, countertops, and love being barefoot because I can dig my toes into the ground when I am losing the balance (my feet are numb anyways so I can walk on any surface without it bothering me).


My neuro thinks that I am having seizures, so that's why I was researching it. Since I can't see a doc for a while, I want to have things ready to discuss with a new neuro when that time comes.

Since I have been out of work, my fatigue isn't AS bad. It's still there everyday, but not as bad as when I was working 10-6, going home and going straight to bed.

I was hoping the progression would slow down being out of work, but it just keeps on going.

When I was dxd 4 years ago I couldn't walk at all, I had no function to my right side, no use of my hand or leg on that side. Couldn't see out of my right eye. Vertigo so bad I was throwing up everyday for hours. Peeing myself cuz I couldn't get to the bathroom quick enough. Losing control of my bowls at work. That has improved since then, so I do understand this disease takes breaks and some areas can heal.

But while those areas healed, the disease decided to work on other areas of my CNS. So now I have difficulties with both sides.

I have aspirated on my beverages so many times. The last time I didn't think I was going to make it. It was at work and scared everyone because I had been without oxygen for so long I was turning blue. I couldn't breathe, not even a forced breath. Vision started to go out. It was pretty scary. My manager started to call an ambulance and at that moment (I must have bent forward or something) all the water I had inhaled rushed out of my nose and mouth. Had 5 full grown men in tears. They were pretty scared by this as well.

My memory seems to be getting worse by the day. I have been so good with my directions since I was a kid. We were on our way out to my mom yesterday and I couldn't seem to figure out how to tell my boyfriend how to get out there. It was a bothersome situation. I have know where my mom lives for 15 years and 6 different ways of getting out there but was so confused on where I was. Definitely slippin.

My cousin did take his life. While I know it was selfish, I cannot be mad at him. It hurts me so much that he was in such a dark, scary, cold, lonely place.

You have been fortunate Lynn to have never been in this place before.

Some people can pull themselves out of it, while others find the only way out is to end things. Imagine how horrible of a feeling that would be.

He was a compassionate, kind, caring soul that had love for everyone around him, he just forgot to give himself the love too.
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