When it's not Parkinson's

Sometimes I think I can tell if someone has Parkinson's just by watching them. I see the uneven gait, the lack of arm swing, or the mask-like face and I'm pretty sure that's what it is. I've dealt with my own case of Parkinson's disease for twelve years, but recently (about the last two years) my sister; Judy has exhibited signs of Parkinsonism. While she exhibited several symptoms similar to Parkinson's, her symptoms didn't quite seem to match those of typical Parkinson's patients. When she had no response to Parkinson's medications, she was given a preliminary diagnosis of "Parkinson's Variant".

At first, she didn't understand what that meant. "Parkinson's Variant" means that although the symptoms mimic Parkinson's, it is actually not Parkinson's at all, but one of several disorders that typically progress faster and have more serious consequences. These include PSP (Progressive Supranuclear Palsey), CBGD or CBD (Cortical Basal Ganglionic Degeneration), MSA (Multiple System Atrophy), and Pickett's disease among others. Judy visited several local specialists, but was never given a definitive diagnosis. She was told we needed to wait for other symptoms to develop, even as her symptoms were progressing at an alarming rate.

We are quite sure, however, that Judy is suffering from CBGD. She is unable to walk, has great difficulty eating, swallowing, and speaking. She is now heavily medicated to ease the pain.

Over the last 15 years, Judy has faced a variety of psychological challenges. She had to quit her job as a telephone operator because of stress. She was eventually diagnosed and treated for bi-polar disorder. I can?t help thinking that the two conditions are somehow related.

To add insult to injury, because she didn't work for a period of more than 10 years, she is not eligible to collect Social Security Disability, even though she made significant contributions during her working years and likely will not survive to retirement age; when she would be eligible. Her husband is struggling to provide "around the clock" care while continuing to work, so he can pay for it all.

We do not know how long Judy will survive with this disease. She sleeps a lot, but seems very lucid when she is awake. She told me once that she didn't think she was strong enough to go through this, but in recent months and weeks she has faced excruciating pain and the knowledge that she will likely die soon. Still she has managed to get some joy and exhibit a sense of humor when we visit her.

It is extremely difficult to get an accurate diagnosis or even information about these disorders and that is why I'm writing this. Here are some links that may be helpful:

For more information about these disorders, here are some links that may be helpful:

http://www.psp.org/
http://www.tornadodesign.com/cbgd/
www.wemove.org
http://www.sp-foundation.org/pls.htm

This webpage was updated 3 January 2008