A few days before I returned home I used Barbara’s car to visit Kathy’s sister, LouAnn in Grass Valley CA. It is about a two-hour drive over the mountains and past Lake Tahoe.
LouAnn has Huntington’s Disease. I almost wrote the phrase ‘just like Kathy.’ But, it’s not the same. While there are a lot of similarities in HD patients, the symptoms may come in a different order. Or one patient may respond to one medicine, and not to another. Some symptoms skip some people. Kathy’s movements (called chorea) were pretty well controlled by different medicines although her hands kept shaking pretty much to the end. LouAnn has the typical chorea – writhing movements of her body. She almost lost her balance a few times.
Dr. Wheelock, at the UC Davis Huntington’s Center, and LouAnn’s nurse practitioner were in the process of gradually increasing her Zyprexa. But apparently, LouAnn was having a reaction to Zyprexa. Instead of reducing her anxiety it seemed to be increasing it. (Zyprexa can also add to other problems but since Huntington’s is a terminal diagnosis a doctor will try to balance things like increased weight with a better quality-of-life). Kathy did pretty well with both Haldol. When that caused a problem she switched to Zyprexa.
The dose of Zyprexa was still much too small (2.5 mg) to help with her chorea or balance. Her doctor is probably working on a better cocktail of meds. Both Kathy and LouAnn had the emotional problems of anxiety, anger and periods of irritability. Ativan and Cymbalta seem to be helping some. LouAnn is very sweet and still tries to take care of herself and Mike on her own. She cuts her own food and feeds herself. During the week, LouAnn has some caregivers and companions that keep an eye on her. Mike had to leave for a while and I offered to stay with her. She got pretty anxious while he was gone. It turned out she kept seeing my car outside and thought he was back. I’m not sure she knew who I was, so I showed her pictures of Kathy on my phone. I know she appreciates any visitors. Her speaking seemed better once Michael was back (and we had some pizza). I have spoken to her on the phone since then, too.
When I spoke with Mike after I got back to Hampden, he said that was one of LouAnn’s bad days. He felt taking her off Zyprexa really helped. We all have our good days and bad days. We just need to enjoy the good ones when they drop by. Trust me on that one.
The drive back was uneventful although one observation is that gasoline is much cheaper at home in “Taxachusetts” than in Nevada and California. It must be all the oil wells and refineries we have here.
Post Script: A friend reminded me of a new genetic test called GeneSight®. Using a simple cheek swab by your doctor, they are able to determine the genomic factors that influence an
individual’s response to medication treatments. Here is the blog post on the Huntington’s Post and here is a link to the GeneSight company website. But your doctor or HD center may have other options. The UConn Huntington’s clinic can get a similar test right in-house at the health center when it is necessary.