Parkinson's diagnosis

Hi everyone. I'm new here, so I'll give a little history while keeping this as brief as I can.

5 years ago I became ill with a virus that attacked my nervous system. I was hospitalized 3 different times in 2 weeks and during that time, I completely lost my balance and my ability to walk unassisted. Prior to this, I was fairly healthy except for my asthma, which was controlled by inhalers. Despite the fact that I had basically lost most of my neurological functioning [I didn't have much feeling in my legs either, and that started spreading into my arms], my doctor didn't do any neuro testing. He did daily blood gases because I was severely acidotic and he did an echocardiogram. He also called in GI to find out why I couldn't keep anything down [thinking I was faking that] and found out that nothing was moving through my digestive tract at all, so I was diagnosed with severe gastroparesis. He finally gave up and transferred me to a psych ward until which time I convinced the doc at the 2nd psych ward that I was not depressed and was finally transferred to a rehab hospital. There they thought I possibly had a stroke 'cause my left side was dragging, but had no proof. After 2 weeks I went home [to my mom's] no better than when I went in.

After coming "home" I saw several specialists and had a lot of testing done. This was done over the next few years. The general concensus was that I probably had Guillain Barre syndrome that went undiagnosed and untreated and that I am living with residuals from that. However, I was also diagnosed with PD. My great grandpa had PD, and I suffer from a lot of the classic symptoms of it. I was seen by a physiatrist who was 99.9% sure that I had PD so he sent me to a Parksinson's specialist. This guy was a total fruitcake and told me that people my age who are looking for a PD diagnosis are either 'gay and afraid to come out because perhaps they live in a small town where everyone knows them' or 'they are a female wanting to be a male or vice versa but perhaps their insurance won't cover the cost of a sex change'. There was one other equally perverted "explalnation" that he gave me for why I was there, and I wanted to smack him to be quite honest. But, he did ask me to come back for a spinal tap and he started me on Sinemet. I agreed to the spinal tap because other docs had mentioned it and hadn't done it AND because he wasn't the one doing it, and I felt it was worth at least trying the Sinemet. Well, the spinal tap failed because after an hour of trying they were unable to find any fluid and I was in immense pain. The Sinemet, however, was like a miracle drug for me. It helped so many of my symptoms. The specialist that I saw that did the tap said that based on that and some of the other findings, he could say with 99% certainty that I do, indeed, have PD.

My problem is this. Even though it is documented by a neurologist who specializes in PD, nobody seems to believe that I really do have PD. My PCP kind of believes me because he is able to read the chart, but he will not acknowledge it when he writes down my diagnoses when I have my physical or if I get referred out to a different specialist. There is a CNP in the clinic that I see on occasion for pre-op physicals, etc. who will NOT acknowledge that I have PD, and she and I have literally fought about it. Even my home health nurses will not believe that I really do have it. They all tell me that people my age just do not "get" PD. Believe me, it's not something that I want either, and I have been through PT, OT, RT, and everything else to slow its progression. I don't want to be 35 and in a wheelchair for the rest of my life. How can I get people to believe me and to accept that this is who I am? Just because I choose to live life to its fullest and not to mope around and act depressed all the time does't mean that I don't have PD. I think that there is this stigma and that people assume that just because you have been diagnosed with a chronic disease, you are supposed to act sick. That's just not who I am. Help!