A great support program for those with and those caring for those with Alzheimer's Disease. The meetings are held in Elmhurst at at St. Peter's Church and is sponsored by the Rush Alzheimer's Disease Center, 600 S. Paulina, Suite 130, Chicago, IL 60612, 312-942-5359.
Showing posts with label Medical Support. Show all posts
Showing posts with label Medical Support. Show all posts
Tuesday, August 16, 2011
Monday, July 11, 2011
Ounce of Prevention
In our condo, we now have Alert 1's medical security system. You've heard the "I've fallen and can't get up!" commercial? Well I decided that for less than a dollar a day it was worth the piece of mind to know that I could get help quickly if I was in trouble.
Did I say I? Well with Gregory's Alzheimer's I realized that I could not depend on him in an emergency. If I need help, unless I am really far gone, I could probably be able to crawl to the station in the bedroom, TV room, or kitchen and push the button for help. If I can not tell the responder what the problem is they will automatically send an ambulance and paramedic.
Then they will notify several people on our emergency list to inform them of what is going on. Our friends can not get to the condo quickly enough to help but they can get here to help Gregory until I return or until other arrangements are made.
So today the system had a test. A fierce storm ripped through Chicago, including Evanston, and over 600,00 people were without power for most of the day. The power went out at 8:00 am, we left the condo at about 10:00 am and by 1:00 pm we received a call first from Jan, and next from Roger, the two first responders on our emergency list.
The Alert 1 unit has a battery back up for short power outages but our outage had spent the battery and the Alert 1 people got a "bad battery" message. They tried calling us but not only were we away from the condo, when the power is out our telephone system doesn't work. So Alert 1 followed through and called the first responders to check up on us.
I called the company back and let them know we were OK. I also added my cell phone number to their information bank with the explanation that our land line does not work when the power is out. While the exercise seemed full of "Strum and Dram" it was good to know that the system worked well.
I called Jan and Roger back and said, "We have not fallen and if we had, we were able to get up!"
Did I say I? Well with Gregory's Alzheimer's I realized that I could not depend on him in an emergency. If I need help, unless I am really far gone, I could probably be able to crawl to the station in the bedroom, TV room, or kitchen and push the button for help. If I can not tell the responder what the problem is they will automatically send an ambulance and paramedic.
Then they will notify several people on our emergency list to inform them of what is going on. Our friends can not get to the condo quickly enough to help but they can get here to help Gregory until I return or until other arrangements are made.
So today the system had a test. A fierce storm ripped through Chicago, including Evanston, and over 600,00 people were without power for most of the day. The power went out at 8:00 am, we left the condo at about 10:00 am and by 1:00 pm we received a call first from Jan, and next from Roger, the two first responders on our emergency list.
The Alert 1 unit has a battery back up for short power outages but our outage had spent the battery and the Alert 1 people got a "bad battery" message. They tried calling us but not only were we away from the condo, when the power is out our telephone system doesn't work. So Alert 1 followed through and called the first responders to check up on us.
I called the company back and let them know we were OK. I also added my cell phone number to their information bank with the explanation that our land line does not work when the power is out. While the exercise seemed full of "Strum and Dram" it was good to know that the system worked well.
I called Jan and Roger back and said, "We have not fallen and if we had, we were able to get up!"
Wednesday, June 29, 2011
Setting Expectations
I am part of an online Alzheimer's Support Group called "Circle of Care" which is sponsored by the Novartis Drug Company. This is a chain of conversation which I recently had with Deborah, one of the facilitators.
INTRODUCTION: Hundreds of years ago, the medicine we have today would have seemed like magic. Today we know that medicine is all about science and each medicine works in very specific ways. How we learn about the ways a medicine might work is varied though – some of us gather information online, some from our MDs and some from friends and family – or maybe a mix of it all. In this discussion, we want you to think back to when your loved one first started their current medication for Alzheimer’s disease or dementia and tell us a bit about your expectations of the medication at that time.
MY REPLY: Right from the beginning the doctors said that Aricept and Namenda would only slow down the disease NOT cure it. We were surprised when Gregory began first Aricept his functioning improved greatly. If he had been functioning at 60%, he shot back up to 80%. Doctors and we were pleased. Then within a few months the functioning was on a downward roller coaster ride so we began Namenda. The same amazing improvement happened and the decline has been very slow since. We still do not expect things to ever be normal again but I do believe the medications have helped. Just recently Aricept has been approved at a little over double the dose and we have begun taking them. Here's hoping for improvement ... certainly NOT cure. P.S. I have always said, "If it would just stop here." But it doesn't. Does it?
DEBORAH'S COMMENTS: But, hope is always there....Michael, before you talked to your doc, did you have expectations of what the Aricept would do? If so, where did the expectations come from? I'm trying to understand how we build our mental map of what we can expect from these medications --where we gather our info to make the mental map. What do you think?
MY REPLY: I have always believed that the "patient" (or caregiver in this case) has at least as much responsibility for understanding the illness, the medications, the precautions, the prognosis, etc ... as does the doctor. Both must be part of the team that makes the best possible decisions and makes the best possible use of the information available. So many people will reply, "I just do what the doctor told me." I say, "Question and understand. Challenge if necessary. Do not accept blindly." I have also heard, "It is just too confusing so I didn't bother." I say, "Bother! If you don't understand ask again. A good doctor will take the time to help you understand and/or send you in the direction of getting the extra help to understand that you need. Have someone help you understand. Don't just settle."
INTRODUCTION: Hundreds of years ago, the medicine we have today would have seemed like magic. Today we know that medicine is all about science and each medicine works in very specific ways. How we learn about the ways a medicine might work is varied though – some of us gather information online, some from our MDs and some from friends and family – or maybe a mix of it all. In this discussion, we want you to think back to when your loved one first started their current medication for Alzheimer’s disease or dementia and tell us a bit about your expectations of the medication at that time.
MY REPLY: Right from the beginning the doctors said that Aricept and Namenda would only slow down the disease NOT cure it. We were surprised when Gregory began first Aricept his functioning improved greatly. If he had been functioning at 60%, he shot back up to 80%. Doctors and we were pleased. Then within a few months the functioning was on a downward roller coaster ride so we began Namenda. The same amazing improvement happened and the decline has been very slow since. We still do not expect things to ever be normal again but I do believe the medications have helped. Just recently Aricept has been approved at a little over double the dose and we have begun taking them. Here's hoping for improvement ... certainly NOT cure. P.S. I have always said, "If it would just stop here." But it doesn't. Does it?
DEBORAH'S COMMENTS: But, hope is always there....Michael, before you talked to your doc, did you have expectations of what the Aricept would do? If so, where did the expectations come from? I'm trying to understand how we build our mental map of what we can expect from these medications --where we gather our info to make the mental map. What do you think?
MY REPLY: I have always believed that the "patient" (or caregiver in this case) has at least as much responsibility for understanding the illness, the medications, the precautions, the prognosis, etc ... as does the doctor. Both must be part of the team that makes the best possible decisions and makes the best possible use of the information available. So many people will reply, "I just do what the doctor told me." I say, "Question and understand. Challenge if necessary. Do not accept blindly." I have also heard, "It is just too confusing so I didn't bother." I say, "Bother! If you don't understand ask again. A good doctor will take the time to help you understand and/or send you in the direction of getting the extra help to understand that you need. Have someone help you understand. Don't just settle."
What I knew about Alzheimer's Drugs came from discussions with our doctors and study online. From the beginning, I knew that Aricept and Namenda would not CURE or REVERSE the dementia. I knew that it would help to slow it down so the quality of life would last for a little longer. I also knew that everyone reacts differently within the general pattern of things. Therefore, I was not so surprised when the medications gave Gregory a jump start of renewed "availability."
And I agree, Deborah, it doesn't stop but the hope is always there. Even if it is the hope to get through one day, one success, one failure at a time. Hope to be strong, supportive, able for your loved one. And storng, supportive, and able for yourself.
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