I just returned from taking Kathryn to the neurologist for her quarterly check. I knew she had declined but was really surprised when the doctor said she was declining way faster than they had expected. When Kathryn was originally diagnosed they gave her 5 to 7 years. I thought she was doing good and really believed that she was going to prove them wrong but when the doctor started explaining all the differences I have to admit that they are correct about the decline. I guess I just didn’t want to see it.
I knew she had some trouble swallowing and walking and she had thrown up a couple of times for no apparent reason and a few other things and that she is less functional and more confused lately. I guess I was pushing it aside and wanting to see only the positive.
The doctor is making arrangements to have a physical therapist come out to the house 2 or 3 times a week to try to help Kathryn with muscle tone. She also told me it was time to fix all the exits of the house that would allow Kathryn to wander outside by herself to be secured so she can’t exist without assistance.
When I asked what I can do to improve her quality of life I did get some good news. There is new research showing that larger doses of Aricept 23mg can help more in the late stages now and is going to up Kathryn’s to 23mg. I will need to watch her closer because the doctor also said that it can cause some unpleasant side effects such as more throwing up and stomach problems in which case she would need to be taken off and return to the lower dose if it will continue to help any.
I still just can’t believe this is happening to Kathryn. It hurts me so much to watch her go through this. She just doesn’t deserve it.
Jim, We all understand your sense of loss at these new developments. We hear you! And we all agree she and our LOs don't deserve this. To see our LOs, who were once highly intelligent fully functioning active productive persons into this helpless state is a grief we deal with daily and only those of us who walk this path with them understand this.
Mimi, you are so right! None of us deserve this but... We have to deal with it. It is really hard to watch them decline so much and when we see them every day we don't think it is going as fast as it really is unless we write things down like a log and then look back on it occasionally. Jim, please know that we are all here for you and we are the only ones that know what you are going through because we are all going through it too. We need each other!
Jim - ask him about giving her antacid or more of one. Aricept and galantimine cause the stomach to produce more stomach acid which is the major side effect. My hb started with the antacid, then I quit but I am adding them back cause he is having a big problem again. He is only on 16mg galantamine. I am glad the doctor never increased it.
For my husband the extra acid causes reflex which he reacts by coughing and can result in vomiting. This is what happened when he had GERDS and he says he feels like he did back then.
Arms around you JimB. Even with my medical training and all I had learned about FTD/MNV. I was shocked when the dr told us he only had 1-2 WEEKS! His breathing had become so very labored because of the atrophy hitting his lungs. He left this world 35 hours later.............. You are so right, they don't deserve it and neither do we.
Jim, love to you and Kathryn. It is very very hard to take this rentless, unforgiving journey. I took DH to a world reknowned geriatric psychiatrist 2 years ago and he intimated that DH only had 5-6 years to live. We're 2 years into that prediction and he had plateaued for almost 1.5 years but has started to decline recently at a faster rate. But he's still in great physical health. I love him evn more now than before, but it's a mixed blessing. Hugs.
Prayers for you and Kathryn, Jim. Hoping that the increased dosage will help. I have yet to speak to DH's neurologist about the larger dose. He is declining much faster than at any point in this journey.
Jim just for the record my DH was on aricept several yrs then out of the blue developed intolerance to it and began throwing up/ for some reason the body didnt tolerate it anymore. just wanted you to know this also happened with galantamine or reminyl later too. their systems seem short on tolerance of medications sometimes even after long time treatment on same. watch for any new signs with the higher doses. my best to you and kathryn. divvi
Thanks all, if someone ask me how Kathryn is doing I can barely talk and I feel like I can’t hardly breathe. I hope that she never reaches stage 7. I couldn’t bare to watch her go through the physical parts of this disease but I dread the day I loose her. I can’t imagine my life without Kathryn.
Charlotte: Thanks for the tip on antacid. I don’t think I would have come up with it.
LFL: Our LOs appear to have the same time line with each other. Kathryn was diagnosed on Sept 30th 2008 and with her meds she seemed to plateau for just less than two years. Now I know that is the time period I thought she was doing good and really believed that she was going to prove them wrong. Now it seems like she is speeding ahead to where she would have been if she had never taken the meds at all.
Thanks to you all, JimB
PS, Kathryn will be 59 on Monday the 25th. Some of our friends are going out to dinner with us to celebrate her birthday.