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Joined: Fri Feb 16, 2007 6:43 pm
Posts: 11
Location: Chico, Ca.
Post New Member, first post
Hello. This web site has been my life line so to speak for some time. My husband was diagnosed with Parkinson's 11/03 at age 67. He never really had any tremors, but the masking, stiffness, shuffle, etc. Very early on he started the word salad. In 6/04 they thought he had a stroke, but it wasn't conclusive. Again, he began getting worse with gait, confusion, and started with hallucinations. We have the best neurologist in No. Cal. and I have trusted him. The first one was terrible. I literally fell into this site and when I started my own research, it was almost as though my husband is the classic LBD patient. When I brought this to the neuro. he said he couldn't dismiss it, but it is difficult to know absolutely. The treatment plan would be the same. Rick , was never on very much medication at all. Then last September, he started having continence issues, bowl issues, and began the falls. In Nov. he had an incarcarated hernia that required emergency surgery. I asked to put him in a nursing home after surgery for one week until he was back to normal. Well, when I thought it was time for his release, his primary physician refused to release him, said it would be too hard for me to care for him and he didn't have much longer....WHAT a shock. I demanded to bring him home and he was immediately given hospice. It has been down hill ever since. Today has been his 12th day of completely being bed ridden. He can hardly communicate. His blood pressure goes from 235/144 to 81/53. It is the worst roller coaster ride I have ever been on. The sad part is that not very many doctor's or nurses are real familiar with LBD. Rick hasn't eaten now for two days, just a couple spoons of creamed soup and nectar. I just keep being told it is part of the process. This has all happened so fast it's hard to grasp. I really feel he is very near to passing but with this disease it is hard to know. Thanks for listening, I just needed to communicate this evening.


Mon Feb 19, 2007 3:52 am
Dear Stephanie,
I am so very sorry for the events in your life, this is exactly what happened with my husband, he maintaned for a long while and then when the down hill slide started there was no stopping it. The DX is very hard for them to know and the only way to know for sure is after death.
Could it be that when he went through the surgery and the week in Rehab that is where the slide started, so many medical professionals know so little about this type of illness and often people with LBD are given the wrong meds and sometimes even for a short while taking them it is irreversible in damage.
I know there isn't much I can say to help you here but I do want you to know it is out of your hands and I will be thinking about you as you go through this very difficult time in your lives. :(

Mon Feb 19, 2007 10:06 am

Joined: Thu Aug 24, 2006 12:03 pm
Posts: 79
Hello, everyone,

I have been disconnected with the forum for quite a while because of problems with my new computer. I read this post just today, March 21 and saw something in it which worries me: the hernia operation. My husband, pretty much stabilized with Modopar and Exelon, has one and although the dr. said it was still small, eventually he will have to have an operation. Does this fact indicate that it would be the beginning of a downslide, as it seemed to be in this case? Could someone advise me on this?

Excuse the personal touch but I tried to contact the web master about the user name, with no luck. What is the correct procedure? Thank you, Dinny Wolff

Wed Mar 21, 2007 12:04 pm
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