My wife Linda is in early Stage 7. About 15 months ago she was put on a very low dosage of risperdal due to agitation. The dosage was .25 mg at 10 a.m.; .125 mg at 2 p.m. and 6 p.m. That means her total for the day was only 0.5 mg.

Risperdal was effective in calming her down. She was walking almost all day and getting blisters that risked infections. After about 9 months she began to show symptoms of Parkinsons. She began to have episodes of leaning badly to the left or right and facing risks of falling. She had tremors and increased stiffness.

The medical team at Georgetown said it was possible the symptoms were being caused by the Risperdal. They also said that it is common, as the disease progresses, for agitation to decline. Therefore, they proposed gradually taking her off the risperdal. It took about 4-5 weeks of gradual reduction, but it was very successful.

The leaning has disappeared. The tremors and stiffness are less evident. Best of all there is an alertness in Linda now that had been dulled by the medication. The agitation is clearly far less than was experienced 15 months ago and is manageable now without the medication.

The alertness is seen in the way she interacts with me. She grabs my nose or ears, hits me in a kidding way and may say "Oh You!" She giggles a lot.

Linda was also on Trazadone which is an anti-depressent with a sleep component. The purpose for her was to help with sleep. Dosage was 100 mg at night. It did seem to help with sleep.

After the Risperdal reduction was completed, we waited about 3 weeks and then started reduction in the Trazadone. That is now complete as well.

The results are mixed but the benefits outweigh the negatives. She is walking more again. We have had some issues of blisters but are keeping that under control. Her sleep is not as good and she gets up sometimes in the night and walks. This is the time when she can get blisters because she may put her shoes on without socks and the caregivers may not notice in the night. She is also doing more "picking" either of sores or just picking a skin point and creating a sore. Her face and hands have numerous small sores...kind of like chicken pox.

But there is so much more energy, alertness, interaction, stability, laughter, silliness, etc.

Occasionally now, when the caregivers are changing her (done every 2 hrs) she seems confused and will resist them, strike them. They are taking it in stride, using 2-3 caregivers if necessary, and say this is still in a very normal range and only occurs with changing. As soon as she is changed, she is back to her sweet self. If I am present, she is completely relaxed and compliant in changing.

I had never heard of this idea of how agitation could naturally decline as one moves from Stage 6 on into Stage 7, but it makes sense. Also, there is a greater desire in the medical and care community to get people off anti-psychotics if at all possible. So this worked for us...at least so far...and I am grateful for careful medicine management, behavior management, and excellence in caregiving since I moved her to a new facility at the end of August.

Blessings and peace to you all,
Bill

this is so good to hear. i am concern about the medications my mother is on and their effects on her body and mind. i want to wean her off aricept. she is stage 5/6 and will be coming to live with me at christmas. much discussion needs to happen with her new provider.