Short Summary of 1st Enbrel Treatment !!!!!!!

We had our first doctors appointment today. During the initial evaluation, the doctors told us mom had some definite positives and definite negatives going into the treatment. She does not have traditional Alzheimer’s. Her condition is more frontal lobe, not Pick’s disease but similar. She had early onset, rapid progression, and some familial history. All of these are considered negatives as far as the success of the Enbrel treatments. However, some of her frontal lobe type symptoms (communication issues) usually respond very well to the Enbrel treatments. Had she been an elderly traditional type Alzheimer’s patient she would be almost assured of some improvement. With her condition, all we could do is try it and see. They said a much higher percentage of patients like Mom do not respond. We felt like they might be preparing us for a poor outcome.

Her baseline MMSE score was 0. The doctors said they had no idea how far below 0 it might be. So it would be hard to measure improvement. We will have to rely a lot on quality of life improvements and subjective assessments. They did comment that her life skills are actually much better than you normally see with such a low MMSE score. So Mom is a very unusual case. In some areas she shows good cognitive skills because of the things she does, but her complete lack of communication makes her almost impossible to test.

We did the injection, then waited to see what happened. Within 15 minutes, Missy came back from the bathroom with Mom and Missy was crying. She had seen some changes. I think the doctors were as surprised as us. They pulled out the video cameras (as did Missy) and started filming (there were 3 video cameras going at the same time). Over the course of the next 1 ½ hours we noted a number of subtle, but definite improvements in Mom. I would not call it miraculous, but I would call it a significantly better than expected result.

Noted Improvements Immediately After 1st Injection (within 1 hour)

1. (Missy) Immediately after injection, I took Mom to the restroom. Stopped, looked in the mirror, and fixed her hair that had been messed up while laying on the inverted table for the injection (doing her hair is new). After done, she started out of the bathroom. I said “Mom wait for me” and Mom stopped and waited. Normally, Mom does not respond to quiet verbal requests, and you usually have to use her name (Joyce) to get her attention. This time she responded to “Mom”.

2. (All) Before the injection the doctors had her count from 1-10, say the days of the week, and say the ABC’s. She could count slowly to 10 with prodding (counting, or a head bob for each number) forward and backward. She said A-G on the ABC’s but always stopped. She could say the days of the week in order with prodding, but not backward. After the injection her counting, ABC’s and days of the week were all much quicker, and without prodding at each step. You only had to say the first item, and she would continue the rest unaided. (funny item – if she happens to stop at L and you restart her, she follows with L – S – U ). She is still not saying more than 3 days of the week backwards.

3. (All) Before the injection she did not consistently identify any members of the family when verbally prompted. She identified Triche once. After the injection, once she identified Triche unprompted (“hi Triche”) when she came back into the room. Once she identified Pal as “Daddy” when asked who he was. She used to refer to him as “Daddy” when talking to us several years ago, but hasn’t in the past 3-4 years.

4. (Triche) I took Mom walking the halls when she got restless. Normally, she walks off and we have to try to keep up. While walking, Mom kept pace with me and we walked side by side. I intentionally sped up and slowed down to see if she would continue to keep pace, and she did stay by my side. We noted when we left the clinic, she walked out to the parking lot side by side with Missy, keeping pace with her companion. We did not have to hold her hand to keep her with us.

5. (Triche) Mom and I walked back into the room after the walk. Mom sat down in the chair, then looked at me and pointed to the chair next to her for me to sit down. I haven’t seen that type of direct communication in two years.

6. (All) Mom appears to be adding some additional words to her repetitive phrases. Yesterday it was primarily “I like LSU” and “I like Squeaky’s”. Today she has added back “Joan Cocke”, “Pat Graham”, and “City Café” to her words.

7. (All) Mom appears to be using the high pitched little girl voice less, and her normal voice more. To all she seemed more relaxed and more engaged with the people in the room. She looked around and made eye contact more. At one point she leaned back in the chair and crossed her legs (something we haven’t seen in a very long time). Instead of a vacant stare and random laugh, we did see smiles that looked like mom used to look when she smiled, with direct eye contact with an individual while she was smiling.

8. (All) Mom is responding to quiet requests/verbal commands much better than before. Generally she will respond to a single request now, where multiple requests with a more forceful tone of voice were required before. We would ask if she would sit back in the chair, and she would sit right back down. Before the injection, we would have to put a hand on her arm or leg and nudge her back to the chair to get her to sit back down. Of course, an hour full of evaluation after the injection (plus 2-3 hours of evaluation before the injection), she was tired of being grilled and made it plain she wanted out of the chair and to leave. Missy figured out she needed to go to the restroom and took her. She did sit back in the chair afterwards, but was restless at that point and didn’t want to stay in the chair. We will check this again tomorrow when she is rested and has not been through hours of evaluation.

Thanks for all of your support - Triche, Missy, and Pal