Full and more frequent doses

Missy alluded to Joyces incontenence. Except for that one day she hasnt had any daytime problems. We are not sure what triggered her episodes but she had 3 in 2 hours. That was on the second full day Missy was here and occurred while we were watching some old movie clips we had converted to DVD. I asked the Doc if it could be emotionally related but he didn't know either. Its been 5 days now and she hasn't had a recurrence, either day or night. I just keep monitoring it and hope it stays away.

On Thursday the 19th I drove us to Lake Charles for a full dose injection. Joyce has been tolerating the larger doses very well. The cheapest site for Enbrel I could find is on line. It was cheaper than Sam's pharmacy. Make no mistake Enbrel is not cheap. We had a very smooth trip and on Friday I saw some of the items we saw after the first injection. She walked with me and stayed closer to me without excessive prodding. She will sit and watch TV for longer periods. She still has communication deficiencies but understands many things I ask her to do. No true conversation yet but still her repetitive chatter. She will "parrot" or repeat things said to her or that she hears on the TV. She has gone and readied herself for bed once since the last injection without me suggesting she do it. Only the second time since last year.

While I haven't seen the "miracle" cure I have seen an improvement in Joyce and keep hoping as we continue injections that she will continue with these small but obvious breakthroughs. We are scheduled back Thursday the 26th for another injection.

Thank you again for all of your prayers and good wishes. --PAL

An up and down visit

I was able to visit mom and dad Sunday, March 15 until Wednesday, March 18. These were the last few days before her scheduled injection. During the visit, I noticed many different things about mom since I had last seen her in California. In areas of verbal communication and ability, she seemed to have regressed. She was unable to identify anyone by name the entire time I was there. Her vocabulary is still somewhat expanded from before her first injection, and she will say familiar things and names if you say them to her.

In other areas, I did notice behavior and abilities that I have not seen in a very long time. Due to rainy weather, my hair was a big fuzzy mess. Several times mom came up to me and tried to smooth it down and make it look better. In addition, she noticed and pointed out a large freckle of mine as though it bothered her in some way. She did this 3 or 4 times during my visit. During the course of the visit, mom was much more interactive and communicative (in a nonverbal way) than before. Several times, she handed me the tv remote and pointed to the tv to get me to change the channel. If I found something she liked, she would stay, otherwise she would leave the room. She consistently gave me nonverbal cues about things she wanted, and she appeared to me to be much more opinionated about the world around her than I have seen in quite a while. She was very affectionate and would periodically just walk up and hug me. When I helped her shower, she was able to take the shampoo and soap and use it appropriately without my help. In addition, she took the water nozzle from me and rinsed her own hair.

There were some other issues that mom had difficulty with in which she had not had any problems with for quite a while, but we are unsure if the specific instances had more to due with emotional reactions or distractions with me being there or some regression. Dad is continuing to be vigilant with her about these issues, and there appeared to be a return to normal after I left.

Dad took her the day after I left for her next injection. I look forward to hearing how she continues to progress. I am encouraged by many of the things that I saw.

Michelle

Triche is working so I will update for now

Joyce has settled in now that we are back home. On Feb 26 I took her to Lake Charles, met with Dr Ryder and she received an injection larger than what we had been getting at the end in Los Angeles. There was no adverse reaction. In fact it seemed to me that joyce returned to the good things we experienced right after the first injection. The next day 2 of her sisters came to visit and Joyce displayed emotion that I haven't seen in at least 3 years. She wept when she met and hugged her sisters. Neither had seen her since we returned and both commented that they could definitely see an improved difference in her since the last time they saw her. needless to say I was pleased. Sometimes when you are too close your mind plays tricks on you. They saw what I had been seeing. Many things that have returned to Joyce have stayed.



After talking to Dr Ryder we agreed to try a more aggressive approach which included full doses and more frequent injections. We started today with the first of these and will moniter Joyce for any new breakthoughs as well as any indication of problems. Barring any problems we will attempt another injection on Thursday Mar 19th. I can see a more responsive Joyce this afternoon than the last few days and no bad reactions which is very good.



I hope this helps everyone who has been so supportive following this journey. We have a long way to go. PAL