jodij - I was reading some old comments from the ICARA Bapneumenizine (?sp) and was wondering if any one has continued. My dh completed the clinical trial and was invited to continue knowing he is receiving the drug. I think this is his fourth infusion coming up. There have been no side effects but how do you know if it is really helping? He is continuing to decline ( probably 4 or early 5 now). Any feed back on what any of you have experienced? Thanks for your help.
Welcome to my website. My husband was in the BAP trial, but was dropped from it when previous brain bleeds were discovered on his MRI. Trish's (one of our members) husband completed the trial, and the last I heard, he was doing quite well. Most of the information I have received from others is similar to yours. No change or continued decline.
I started this site in 2007, because I needed a place that dealt with my unique issues as a spouse of an Alzheimer patient. It is now a place of comfort for spouses/partners who are trying to cope with the Alzheimer's/dementia of their husband/wife/partner. The issues we face in dealing with a spouse/partner with this disease are so different from the issues faced by children and grandchildren caregivers. We discuss all of those issues here - loss of intimacy; social contact; conversation; anger; resentment; stress; and pain of living with the stranger that Alzheimer's Disease has put in place of our beloved spouse/partner.
The message boards are only part of this website. Please be sure to log onto the home page - www.thealzheimerspouse.com - and read all of the resources on the left side. I recommend starting with "Newly Diagnosed/New Member" and "Understanding the Dementia Experience". If it applies to you and your spouse, there are 4 sections for EOAD (early onset AD- now called YOUNG onset)members - two of which focus on the young teens whose parents have EOAD There is a great section on informative videos, and another excellent resource - Early Onset Dementia - A Practical Guide. You can go to the top of this page, click on "search", and type in EOAD, making sure the "topic" circle is filled in. All of the EOAD discussions will come up - there are about a dozen of them.
Do not miss the "previous blog" section. It is there you will find a huge array of topics with which you can relate. There is a "search" feature on the home page that allows you to look up different topics that may have been explored in a previous blog. Log onto the home page daily for new blogs; news updates; important information.
When you feel comfortable, please tell us more about you and your spouse.
HI Joanne, My husband is at about the same place as yours....finished the study and is now on "compassion dosing". He has also had about 4 infusions of "the real stuff". I just had a long discussion with the study MDs because my dh has been declining over the past 8-9 months in a major way. I let them know what deficits were becoming apparent and that I felt the medicine was not helping. They asked us to stay in the 'after' group as they feel the info they are collecting is valuable. I agreed for as long as my dh has no anxiety re the testing that they continue to do. Where are you guys located? Welcome to Joans site where you will find amazing people and support. Sue
Thank you for the reply. I really appreciate all the information on the site as well as the great support you give each other. I am in SE PA. DH has had no problem with the study, MRI, testing etc but I suspect that he is not testing very well. Last year was a big drop in his score; more than average I was told. Everyone, friends, neighbors, family are still saying "He looks great" - "Doesn't look like anything is wrong with him" etc. I say live with him for 24 hours!
Up until two weeks ago he was still driving but when he was to pick me up at work ( been there 25 years!) he never showed. Left the house on time but got lost and/or forgot where he was suppose to go. Did find his way home. I have not taken away the keys but have made every effort to arrange affairs so that he does not have to drive. so far he is cooperating but, as we all know, that can change at any time.
I've been thinking lately that Alz is the only disease a person gets punished for having. With other illnesses people are encouraged to try all treatments, hang in there, you can beat this etc. With ALZ it's "where did you put (your stuff)?; Don't go out walking; you can't drive that car, stay away from the stove etc. At least that's what happens in my house. I have been literally praying and reading all I can about patience. It doesn't come easy.
I know there will be lots of help and encouragement when I read through all on this site. Thanks,