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Sunday

When do you realize that it's time to throw in the towel? I am sitting here with no family (my mom and sister, who are so self involed they don't care) and my husband and children have given up on me. My husband, the only man I ever loved has given up on me and our marriage. I have decided not to continue with my bi-pap and puffer. I been having coughing fits more and noone around. I decided to go off of some of my meds as well. Why not just let the disease take over, I have lost everyone I ever loved this year. I put my whole life into my family and I am the one left behind.

Returning from the Darkside

Its been a slow spiral into the darkside for the last couple of weeks. Well , I finally bit the bullet and asked for help with the EL (Emotional Lability) and darker thoughts I have been experiencing. I have some new meds for this. Starting small , but I feel better just starting on them. So Watch out .... I'M BACK !

Things not looking good...

After my most recent visit to the neuro on Sept. 25, the Kennedy's Disease diagonisis looks like it might be for real after all. When I got to the neuro, I was forced to dress into a patients gown. How embarassing, especially in front of my parents. :roll: Well, the first thing the neuro did was test my reflexes. Earlier in late August, I had diminished reflex in my patella in my right leg, now I lost my reflex in my ankle and my left leg is start to diminish.

I hate my life :(

I am a 19 year old male that has been going through these weird symptoms since the beginning of this year. SOOO I went to the Neuro on the 12th to evaluate my sore leg and fasciculations, and the doctor notes clinical weakness in my leg. Upon testing my reflex again, all of the reflex has diminished from my right leg. At my last visit, it was only my patella reflex. The doctor has told me that I might have Kennedy's Disease since a couple of my family members have it. :( **** my life. I may as well drop out of school if I get this diagnosis. :-(:sad::-|

September 9 2009

Back for more blogging! I am trying to hang in here. I would love nothing more than to get a dx of something other than ALS - so I can tell other people not dx that there is hope out there. I'm writing more in my blog to update on my physical condition. My foot/toes are thinner than ever, and it's creeping up my right calf. From some angles, they look the same, but I can measure a difference, and see it from the front quite clearly. Even my right thigh is showing changes. What I thought was 'pain' in my foot I can now recognize as weakness.

This will help us and hopefully others also.

Never written a blog before and would never have thought I d be writing one on this topic,and I guess those reading it didnt ever think they would be either. Ours is a very complex story as many are. ED is my ex partner who has now come back into our care as he has special needs following his diagnoses in July with PBP.

Pressure Sores

Sugar treats bedsores better than any antibiotic. I did some surfing, and here's what I found. Time Magazine/CNN Decubitus ulcers, or bedsores, have for centuries plagued patients and stubbornly resisted the efforts of doctors to cure them. But it appears that the sores, which result from the continuous pressure of the body against the bed, are succumbing to new versions of an almost forgotten medical approach:

What goes around , Comes around

I am posting this here for people to see, but not on the general forums. I don't want it to be seen as waving my good fortune in front of others. I have been blessed with fantastic friends and an amazing Company to work for. Some of these friends own the company. I currently have a company car as one of the perks of my position at work. This company car is being handed off to another employee and the company is adding a used wheelchair van to their fleet for me to drive.

My First Blog

:grin:Today as I walked my cute cocker spaniel and had my conversation with God I realized that perhaps starting to blog my ideas and thoughts might be helpful to someone. Having been in the trenches as a caregiver, I feel as though I have a lot to offer. I have read some wonderful, fascinating blogs out there, so I feel encouraged to do the same. My journey with Andy was all encompassing, compassionate, and exhausting. I would not trade it for all the money in the world. I do feel enriched and I certainly feel truly loved. Andy died on 8/2/09.

More Blogging

Time for more blogging. I sort of regretted my last blog as I put EVERYTHING out there for strangers to read. I got some nice comments back and I do appreciate that. I debated whether or not I should continue to blog, and I'm going to, here and there, when I feel like it.

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