From the beginning, I knew that Michael J. Fox and I had little in common. The meds never held me for more that 3-4 months at the time. Then my symptoms would return. Which led to an increase in medication which worked for 3-4 months ago. This has been a continuing cycle since 2008. Then my neuro referred me to another neuro. The new neuro (on my first visit) said that I definitely did not have plain, ole Parkinson's -- he just did not know what. This lead to every test known to man. All of which revealed nothing. The only deficiency was a low B-12 level. The neuro believed that I may have SupraNuclear Palsy or Multiple System Atrophy. We then agreed that a referral to Mayo was the answer. So I waited ... from April 2012 until December 2012 when Mayo in Florida could finally see me. In less than 3 weeks, my life turned around. Because I, at last, have a name to call "it" which is Lewy Body Disease. I don't have dementia or Alzeheimers (yet) but I do have mild/moderate cognitive abilities. I will continue to have good and bad days; without notice. But now I have a name to call it which is a relief. I had gotten to the point to where I honestly believed that I was making it up. Only my partner believed me. I am sure that the road ahead will be rough, but now I am happy just to have a name to call my ailment and that name is Lewy Body.
Right away I knew this was what I had as all the symptoms just seemed to fit me. All the others didn't fit completely. I had heard the name, Lewy Body, but didn't really know what it was really.
On another subject, I stopped working in February 2012. I filed for disability with Social Security in March 2012 and was approved in August. I had to wait the mandatory 6 month waiting period and I received my first check in January 2013. My experience with Social Security was relatively painless. However, staying at home all day isn't necessarily a good thing. I am still trying to find a routine for myself.
In February I also gave up driving and we moved from the country into town, downsized. Now I can bicycle (on my good days) across the street to a shopping center. Now that I know the name of my disease, I intend on looking for a place to volunteer.