interesting study

This isn't information I need yet, but it is so clear I thought it worth linking:

Clozapine is the only antipsychotic shown to be efficacious for the treatment of PD psychosis, although quetiapine is more frequently used because of convenience. Concerns about antipsychotic sensitivity in DLB patients may prevent antipsychotics from being tested further in this population. There is also preliminary evidence that cholinesterase inhibitors may have antipsychotic properties in both PD with dementia and DLB.

source: "Presentation and Management of Psychosis in Parkinson’s Disease and Dementia With Lewy Bodies," Daniel Weintraub, M.D., and Howard I. Hurtig, M.D. Am J Psychiatry 164:1491-1498, October 2007 http://ajp.psychiatryonline.org/cgi/reprint/164/10/1491

antidepressants

I went on Zoloft (actually the generic) a couple of months ago, feeling that I needed help to get through the stress of house renovations and moving. I'm very medication sensitive and I found that 1/2 a 25 mg. tablet daily was plenty, in fact when I went to my gynecologist, who prescribed it, for my annual checkup I complained that I can't cry any more.

She was concerned about my cholesterol numbers. My HDL is always very high--over 80--and my triglycerides were excellent (34), so it isn't clear that I have to worry. But my LDL was up a lot. I had been on vacation and eating less carefully, but my A1c was down slightly at 6.0, which suggests that my diet hasn't gotten worse. I couldn't figure out what had changed, particularly as my LDL had been trending downwards before that. The doctor asked if I was doing less exercise and I am doing less than two years ago, but not less than at the time of the last test. John's experience is that exercise improves triglycerides and HDL, not LDL. I'm pretty careful to avoid transfats.

I'm already taking fish oil, so what to do to bring my LDL down? As I started to look for information on approaches that would fit my way of eating, I discovered scientific papers that say Zoloft raises LDL. I'm going to taper off the Zoloft and see what happens. See if my LDL improves (the doctor wanted another test in 2-3 months) and see how I feel. One source suggests that Celexa might not have the same effect, if I find I need an antidepressant (and it comes in pills than look like they can be split to get the lower doses that work for me). But I'm hoping I can hold on to this stabler place now that I've found it.

"diabetes of the brain"

I went to a very discouraging meeting at work today--two hours of almost total negativity towards the plan that would replace my program. If that plan doesn't succeed I strongly suspect the alternatives will be worse.

So instead of wallowing in my discouragement, here is some information I pulled together to answer a question about Avandia for dementia:

There's a good discussion of some possible relationships between diabetes and dementia on http://diabetesupdate.blogspot.com/ The title of the post is "Things you can do to preserve brain function" and it is currently the top post.

Avandia is nasty stuff. 66% more heart attacks. Causes water retention. Causes weight gain. Causes heart failure. Causes osteoporosis. Causes macular edema. The safe way to reduce blood sugar is to eat fewer carbohydrates. The next best approach is the drug Meformin, which the life extension movement even recommends as an anti-aging drug.

If dementia is diabetes of the brain, with the brain no longer able to use glucose properly, then the promising approach is to feed the brain cells with ketones, which they can use instead of glucose. There is a medical food supposedly coming out this spring to do so: http://www.news-medical.net/?id=43094 But you can accomplish the same thing by adding coconut oil or MCT oil to the diet. See http://coconutketones.com/ A lay expert member of the Alzheimer's Spouses group has looked at the published scientific literature and says this is definitely more than quackery. The thread on coconut oil at http://www.thealzheimerspouse.com/vanillaforum/ has the best discussion I have seen.

Update: here is an particularly good link for the scientific explanation: http://www.savethesynapse.com/wp/?p=15

neurologist visit

John has an appointment with the neurologist today. The neurologist is gradually getting to know John better and ask smarter questions. He asked John about constipation and sleep and in detail about exercise and he asked me if I thought going back to 5 mg. Aricept had made a difference. I said no--I saw a benefit with the 5 mg. but not a significant difference between 5 and 10, though that may be because John is less depressed recently. John felt the 10 mg. badly affected his balance and it is better again now that he is back to taking 5 mg.

John is concerned that his walking is getting more awkward. I guess that is the one place where there is clear progression in the last three or four months. I asked the doctor if it was time to get a handicapped parking permit and the doctor said yes and signed the form. That feels big to me--we are in a new category--but John seemed to just see it as a convenience.

The next question in my mind is when to start Namenda, but thought I would wait and ask it of the movement disorders specialist this summer unless John starts to have hallucinations, which would be a reason to start sooner.

bad cold

I had hoped to head it off, but it didn't work, I've got a bad cold. I am trying to practice being gentle with myself--last night I went to sleep before 8 pm and slept until after 7 am and today I went to my office but didn't get much done. I've been cooking dinner despite how badly I felt--John would have if I had asked but I didn't ask because he would have been so slow and dinner would have been late. But he has been concerned. I hope he doesn't catch it, as even dextromethorphan is on the list of drugs to be avoided, much less codiene cough medicine.

John is home

After 10 days apart what I notice again is how slow John is. He wanted to go to a meeting at 6 and it is my week to cook, so I had dinner ready at 5:30. It took him until about 6:10 to eat.

While in Texas, John spent a lot of time with his closest friend, who has been in denial about John being sick. John said that his friend became very protective of him, doing things for him.

John has now been on 10 mg of Aricept for about two weeks, no problem with side effects. Perhaps it is helping--he went to the town planning board meeting (to oppose a big box store in a residential neighborhood). That seems different from earlier in the fall, when he said he wanted to be a poll watcher but then didn't do anything about signing up for training.

I told John about coconut oil, and he is interested in trying it.

awareness

An English blogging doctor has a fascinating post in which he says that some patients who are unhappy at the stage where they see their dementia progressing become happier when the medication that was helping them is stopped and they progress further into a level of dementia where they are no longer aware of their losses. A painful thought.

John is not a very reflective person and is determined to make the best of his situation, so he doesn't seem too depressed by his losses. I wonder if he will be at a later point.

different approaches

I spoke with someone at church today whose husband was diagnosed with Parkinson's two years ago. He is now doing so much better, and she wanted to tell me not to be discouraged, that if we kept trying we will find medication that will really help. She was hopeful for a cure and said the doctor told her husband he would die of something else.

We are only six months from John's diagnosis, and maybe in a year and a half I will be in a positive place the way she is. But I doubt it. We went to a Parkinson's Disease Foundation educational conference last spring in Charlotte and it was clear to me that there aren't any big improvements in treatment in the pipeline, at least in the next five years. Medication has helped, and John is doing well. But I see the signs of how it will get worse. I doubt that in a year and a half he will still be able to travel alone, though I could turn out to be wrong about that.

I do want to get better at enjoying what we have while we have it. But I don't think denial would work for me--I would get angry at what John can't do. And I want to prepare for the future.

Prescriptions

John is going to Washington DC tomorrow. He will be flying there and taking public transportation once he gets there, and he will be staying with my aunt, so I am not particularly worried about the trip.

This evening it was about 5:30 pm when we got home from the sleep doctor (plus a trip to the supermarket because John was going to cook but hadn't bought anything). He remembered suddenly that he needed to get his prescriptions filled before his trip. He started gathering prescription bottles, and I said "Do it from the list I made up, not from the bottles." He said no, he didn't trust the list, he wanted to do it from the bottles. I said "At least check the bottles against the list on the computer."

When he had left for the pharmacy I checked the bottles he had left on the table and found that he had called in a medication he has stopped taking and not called in his Sinemet. I called the pharmacist and corrected the error. This is a small town pharmacy owned by two pharmacists, so the pharmacist knew who I was. He even started to tease me that they don't take corrections, but I said "This is a tense subject at our house: whether John can manage his own prescriptions."

When John came home and we were eating dinner (which I cooked), I asked him if it was time for me to take over getting his prescriptions. He said no, not at all. I asked him what he was going to do differently the next time, and he said be more careful. I said that wasn't enough, that he needs some strategy such as using the list on the computer or at least keeping his current prescription bottles in a separate place instead of in a tray with many old prescription bottles. He didn't say anything to that.

The mistake would not have been a crisis, as he had enough Sinemet left for his trip. But I had worked it out so all of his prescriptions can be filled at the same time instead of spread out through the month, and I would hate to have him mess that up.

I think to him managing his own medications is as important a part of his sense of control as driving is. I don't think he is messing with them in any dangerous way, just occasionally taking an extra one of the Clonidine he takes to settle his ADD so he can sleep. But he has some system of three bottles of each medication that he doesn't want me to simplify. So I guess I will let it go--hopefully before it gets to be too much of a mess he will be willing to admit he needs help.

visit to the specialist

Yesterday John saw a Parkinson's specialist at Medical University of South Carolina, Dr. Bergmann. In our last visit, he said he wanted neuropsychological testing before he saw John again. John had that testing at the end of May, and I was upset when the psychologist presented the results as showing that John was not significantly impaired.

Dr. Bergmann viewed the test results quite differently. He said that a 37 point difference between verbal and performance IQ was not something you would see in normal Parkinson's. He said the block design test is the canary in the coal mine for Lewy Body Disease, and that was John's lowest score. He also thought John's 40th percentile on letter and category fluency was signficant.

He increased John's sinemet (to one 100/25 four times a day) to help his increasing Parkinson's symptoms but told us to be careful about dopamine discontrol syndrome and said that punding is particularly characteristic of Sinemet. He said to John that he needs to understand that one of the symptoms of the disease is lack of insight and that he needs to trust me.

Dr. Bergman didn't increase the Aricept above the 5 mg. John is taking. Dr. Bergman said that Aricept tends to makes the Parkinson's symptoms worse so he keeps the dose low, and that its positive cognitive effect builds up gradually over several months.

cutting back medication

A few weeks ago the sleep doctor told John to cut down on the Imipramine he had been taking to help him sleep. John said he was going to put off doing so because he was afraid he wouldn't be able to sleep. Today when he looked at my notes for the Parkinson's specialist on Wednesday, he said he had cut his dose in a half a week or so ago and then a few days ago stopped taking it altogether. He thinks he is feeling less stress so sleep is now less of a problem. He has also cut back one of the two medications he was taking for prostate enlargement. He is still taking six prescription medications, but he has dropped two and reduced one. It is all a good sign.

Doctor's appointments

Yesterday I went to my gynecologist for my annual checkup and John had a neurologist appointment. The gynecologist saw how stressed I am and wanted to put me on estrogen or an anti-depressant--she said menopause is a very vulnerable time for depression. I said let me try to handle it my way for a while longer. My A1c (a diabetes test) was up from 5.7 to 6.5--perhaps some from eating less carefully while traveling but I think mostly from stress. We agreed to schedule another appointment in three months. I fear that an antidepressant would tamp down my feeling so I wouldn't be able to work through them. But right now I can't imagine how to work through them, how I will get to deep acceptance of my situation. I am going to try a herbal supplement for stress.

We came away from John's neurologist appointment with prescriptions for three things I had decided to push for:

• Aricept, an Alzheimer's medication that helps many people with LBD
• A blood test of John's B12 level
• An evaluation of his driving

John has an appointment with the Parkinson's specialist at the end of the month, but I didn't want to wait until then to start on an Alzheimer's medication. I've heard reports that at least for some people with LBD it doesn't just stabilize them but brings real improvement. It is going to take a while for me to have any sense of that, but the immediate good news is that it is not causing John stomach upset.

email to doctor

I've slowly been working on an email to the specialist who saw John. He wanted John to have neuropsych testing before trying Alzheimer's medications. The neuropsych testing didn't show much, but I still have some hope that Alzheimer's medications would help. So I am trying to explain in my email the issues that the neuropsych testing didn't show. So far I have written:

The testing doesn’t show problems, but I experience our daily life as radically changed. Some friends came to visit last weekend and were struck not only by John seeming physically frail but also by how he turns to me to do things for him and/or tell him what to do and by his being detached from what was going on (even more than he used to be).

Let me see if I can be more systematic about what symptoms are affecting our life:

• John can’t manage planning things like travel or family activities. I notice this most with anything that requires trading off several considerations to decide what to do, but it is also an issue with simple family activities because he doesn’t take initiative. He doesn’t seem depressed, just passive.
• John gets focused on something small to the exclusion of what is significant. One day at the family summer house he was focused on flies (there were indeed some flies in the house). He knocked into and broke a large bottle of salad dressing trying to kill a fly, then got obsessed with going to town to buy a flyswatter. What I thought should have been significant was whether we were going to take our kids to the beach.
• John’s memory has never been good but it is significantly worse. Mostly plans or things that need to be done go out of his mind but he will remember if I remind him. But occasionally he doesn’t remember even when reminded.
• He gets confused about things such as what we need to do or why. Mostly I can explain whatever it is to him and he will get it (or at least say he does). I haven’t seen him get lost in familiar territory yet, but he did fail to recognize our rental car after we had had it almost a week.
• He will usually either leave the room and go read or sit without saying much if there are more than two or three people gathered, even with friends and extended family. He has some trouble with his hearing if there is background noise but it feels to me more like he gets lost.
• It usually takes him until at least 10:30 to be ready to go anywhere in the morning.

John doesn’t tend to get anxious and is only rarely defensive or in total denial. He seems willing to put himself in my hands. But I can’t do everything. I need to be able to put some of my energy this summer into my own work and our son’s college search. I’ve been hoping that Alzheimer’s medications will help.

vacation

We made it to Cape Cod yesterday evening, through remarkably light traffic. My family has a house here, and for about 15 years John and I and our kids have come here in June, before most of the rest of the extended family gets here and before the town gets crowded. It will be interesting to see what changes I notice in what John can do from a year ago. Yesterday when we picked up our daughter and had to deal with lots of family, he was doing a good job. So far what I have noticed here are physical things: carrying the bags up to our second floor room and making his bed were more difficult for him than in the past. If the second floor room becomes too difficult there is a first floor room that was my room when I was a teenager that we can use next year.

Thank you, Joann, for the idea about medications. The first time I tried to organize John's medicines, he wouldn't let me consolidate them because he said he wanted to have three partially full bottles of each prescription (one extra was for travel, the other was so if he dropped and spilled a bottle of pills it wouldn't be a full one). I bought him a weekly pill organizer and told him if he used that I wouldn't have to take over managing his medications as soon. He has now filled it a couple of times himself so I have hope he will continue to make the effort to use it. I will look into having the pharmacy do it for him, but I have a feeling he may not be willing to give up that much control yet.

Doctors

One of the things that feels like a big change in my life is going to all doctors visits with John. I don't think I had ever been to a doctor's visit with him before, though he had been to some with me when I was pregnant.

In the winter, before he was diagnosed, he would come home from a visit to the urologist and not be able to answer any of my questions, so I started helping him prepare a list of questions in advance. But it isn't just that he doesn't think of or remember questions to ask, it is also that he isn't assertive with doctors. I don't know if he missed the boat when I learned to be more assertive with doctors or whether it is the passivity associated with the disease.

So I go to all his appointments and give my perspective and most of all ask questions. And it is a lot of appointments, as we learn more about this disease and put into place the set of specialists he needs.

There is the urologist--several additional tests and procedures since the surgery because the issue hasn't improved much. The urologist did do a test with a catheter with pressure sensors that showed that the problems were due to prostate issues, not due to Parkinson's (the bladder contracted well and the spincter opened well, which are the things Parkinson's can affect).

The family practioner referred John to a neurologist who then referred him to a movement disorder specialist (that story is below). The neurologist wants to see John every couple of months and the MDS wanted to see him again in three months. The neurologist put John on Sinemet and the MDS increased the dose to one half of a 25/100 four times a day (still very low). John reports that has helped him move much more freely, though I don't notice much difference.

The movement disorder specialist wanted John to have neuropsychological testing before deciding whether to prescribe medication for Alzheimers. That requires three appointments--one beforehand, the testing itself, and then one to discuss results. I have some hope from what I have read that the Alzheimer's medication will be a real help, so I pushed to get those scheduled quickly. John goes for the testing Friday and we get the results next Tuesday. But then we will be away so it will be July before John would actually start a new medication.

The movement disorder specialist also wanted John to work with a sleep specialist to find a different medication to take for sleep, as the one he takes can make REM Sleep Behavior Disorder worse. That also requires three appointments--one before and one after the sleep study itself. I'm not optimistic John will change his terrible sleep patterns, but he says he is willing to try. It probably will mean trying several different medications before finding one that works long term.

I asked the neurologist for a referral to physical therapy, as John wants to start an exercise program and I'm hoping the physical therapist can recommend a knowledgeable trainer. Everything I hear says that exercise is one of the most important things that can be done for Parkinson's. Our insurance doesn't usually pay for ongoing physical therapy, just for a physical therapist to teach the patient how to do exercises at home. I'm going to ask for some kind of written recommendations, both because John doesn't remember details well and because he can then give the recommendations to a trainer. That appointment is today--we will see what we learn there.

And that isn't counting that he is overdue to go to the ophthalmologist and should probably get his acid reflux related issues checked again. Thankfully after the prostate surgery he has met the out of pocket maximum for his health insurance so it is paying 100% and we only pay a $10 copay.