Living with Alzheimer’s – Rick Phelp’s Video Log, Day 5

Living with Alzheimer’s – Rick Phelp’s Video Log, Day 5

Rick talks openly about everyday mishaps due to the disease.

[youtube=http://www.youtube.com/watch?v=S_XdfBZLDOU]

Rick has been diagnosed with Early Onset Alzheimer’s Disease EOAD. I will posting these videos as I get them from Rick. If you are interested in truly understanding what it is like to have Alzheimer’s or are caring for someone with the disease, I believe these video logs will change your life in a positive fashion.

In addition to this video sequence, Rick has also started a group called “Memory People” on facebook.

The group is for both people with Memory Loss and their Caregivers. Here is some more information on how to find “Memory People” on facebook.

1) Log into facebook

2) If you have not signed up for facebook yet, you must do this first. Once you have done this you will have a home page and can follow the directions below. To sign up for facebook, just google facebook.com and follow the directions. It is very simple to do. I did it!

3) Once you are logged in on your home page you will see a search box just left of the facebook logo and next to the little, people, comment, and world icons. You can’t miss it.

4) Type in “Memory People” and a list of groups will appear

5) Look for the drop down and click on the one that says “Memory People” and it will bring you to their page.

6) From there you can decide to join by clicking on the button that says “Join” I believe it is in the upper right corner of the page.

http://www.youtube.com/watch?v=S_XdfBZLDOU

I have been talking to you off and on for a while now. I appreciate your attention to this subject. I have not spoken of my memory issues. They began when I had MRSA in 2008 and almost died from it. The vancomyacin antibiotic appears to have a side effect of memory disruptions. For me, it appears to have started a slowly descending avalanche. I had no choice but to take the medicine as it was the only one that tested as able to cure my strand of MRSA. I was also allergic to vancomyacin and had to take benadryl shots immediately following the injection of the antibiotic.

I also had to stop taking my heart medicine because the vancomyacin made my long diagnosed irregular heartbeats go haywire.

The doc’s said that as the illness was brought under control, the memory problems should work themselves out. Well it is January 2011 and it is still lingering. It took almost a year to get the MRSA to not show up in my blood work. It took me a year to get my doctor to take me seriously that something was going on in my body that was not right. I understood that it is difficult to define and diagnose with the symptom that something is not right. Even when I went in with the lesions, she said that she would lance them and send them in for testing, but that I needed to understand that I was not sick enough to have MRSA. She even lanced my lesions with her finger nails and only washed her hands with soap after doing this. She stopped being my doctor that day.

Okay, I am wandering off topic. I guess I am attracted to your site because some doctors have asked me if I might have early onset Alzheimer’s. I can only tell them what previous doctors have said. My neurologist asked me if I eventually remember the forgotten information. For the most part the answer is yes. However, driving around about two miles from my house crying and having no clue where I was or which way to go to get home still leaves me unsettled. I did eventually find my way home. I remember taking an honest to goodness guess. Needless to say, I owned a cellphone immediately after that happened. I still get lost, I still find my way home. I find that it is worse when I am in a lot of pain or when I am very anxious. I saw a new PA last week for the first time. She was trying to get a history of my problems. The answers I kept giving her made no sense. I kept trying to fix the answers that I knew were wrong, but I just kept messing the answers up more. I ended up calling my husband and having him listen in. The PA told me outright that she did not believe I was really having this problem. I have filed a complaint against her. I was very upset about the confusion and her telling me that I was faking it only made the situation worse. How could I prove that I wasn’t faking it?

Sometime, I wonder if I might have early onset Alzheimer’s, as my Great grandmother and my Great Aunt had it. I watched my Great grandmother from about age 10 to 12 change into someone that recognized. I clearly remember the last time I saw her alive. I was standing at the foot of her bed watching her battle with my Aunts about trimming her nails. For a brief moment, she stopped and looked at me. The moment of recognition in her eyes is still so clear to me. I know she knew who I was. She smiled. I remember sleeping between her and my Grandmother as a child. It is one of my favorite memories, the smell of their combined soaps and shampoos. I love that memory. My Aunts were surprised by the sudden change in her. One of my Aunts looked at me and looked at her and said, “I wonder who she thinks she is?” I look soooo much like her that I could have reminder her of herself or someone from her past, but I really believe she knew who I was. One of those Aunts has now did with Alzheimer’s. I told my children that I understand that Alzheimer’s is a nightmare for the one’s who love the person who has the disease, but it can’t be that bad for the one who has it. They do not remember what it was like before that moment. I am not saying that there are not moments like the one my Grandmother had, but based on what I saw, as long as my Grandmother was getting her way she seemed calm. For some reason, she always fought them when they cut her nails. If I should have to go like that I think it could be a blessing not to remember what I am missing out on or what I have done wrong. I watched my best friend of 19 years die with liver failure. I was one of his caretakers. He fought so hard with the things he felt he failed at. I would not wish that on anyone. Sometimes, I believe things might have been better had he not tried so hard to clear his conscience as he was getting closer to death. Sometimes the truth hurts worse that the illusion that is settled for during the resolution of the situation.

Again, thank you for your diligence in informing us of all that surrounds this mystery that is Alzheimer’s! Whether we have it early, on time (whenever that is), or never, I like to be prepared for any situation. One of my professors in my Thanatology class asked me once what I would do if I had genetics tests done to say if I had it or not. I told him that I am the type of person who would benefit from the diagnosis no matter which way the answer goes. I already know that it is in my family, so I would never pay for the genetics testing. I already talk to my children, now adults, about the topic. I like to tackle a problem immediately. I hate playing the wait and see game. Genetics testing for this problem does not fall into the need to know category for me. I am happy following your lead. You offer so much information that most doctor’s probably does not know as much information as your site has passed along. If it were looked at in it’s entirety, it would most likely be become the source for doctor’s as well as for those who are dealing with it. Congratulation’s on your recognition! Keep the information coming however it can be gotten.

Sincerely,
Abigail

4 Replies to “Living with Alzheimer’s – Rick Phelp’s Video Log, Day 5”

Babby says:

January 5, 2011 at 11:06 pm

I have been talking to you off and on for a while now. I appreciate your attention to this subject. I have not spoken of my memory issues. They began when I had MRSA in 2008 and almost died from it. The vancomyacin antibiotic appears to have a side effect of memory disruptions. For me, it appears to have started a slowly descending avalanche. I had no choice but to take the medicine as it was the only one that tested as able to cure my strand of MRSA. I was also allergic to vancomyacin and had to take benadryl shots immediately following the injection of the antibiotic.

I also had to stop taking my heart medicine because the vancomyacin made my long diagnosed irregular heartbeats go haywire.

The doc’s said that as the illness was brought under control, the memory problems should work themselves out. Well it is January 2011 and it is still lingering. It took almost a year to get the MRSA to not show up in my blood work. It took me a year to get my doctor to take me seriously that something was going on in my body that was not right. I understood that it is difficult to define and diagnose with the symptom that something is not right. Even when I went in with the lesions, she said that she would lance them and send them in for testing, but that I needed to understand that I was not sick enough to have MRSA. She even lanced my lesions with her finger nails and only washed her hands with soap after doing this. She stopped being my doctor that day.

Okay, I am wandering off topic. I guess I am attracted to your site because some doctors have asked me if I might have early onset Alzheimer’s. I can only tell them what previous doctors have said. My neurologist asked me if I eventually remember the forgotten information. For the most part the answer is yes. However, driving around about two miles from my house crying and having no clue where I was or which way to go to get home still leaves me unsettled. I did eventually find my way home. I remember taking an honest to goodness guess. Needless to say, I owned a cellphone immediately after that happened. I still get lost, I still find my way home. I find that it is worse when I am in a lot of pain or when I am very anxious. I saw a new PA last week for the first time. She was trying to get a history of my problems. The answers I kept giving her made no sense. I kept trying to fix the answers that I knew were wrong, but I just kept messing the answers up more. I ended up calling my husband and having him listen in. The PA told me outright that she did not believe I was really having this problem. I have filed a complaint against her. I was very upset about the confusion and her telling me that I was faking it only made the situation worse. How could I prove that I wasn’t faking it?

Sometime, I wonder if I might have early onset Alzheimer’s, as my Great grandmother and my Great Aunt had it. I watched my Great grandmother from about age 10 to 12 change into someone that recognized. I clearly remember the last time I saw her alive. I was standing at the foot of her bed watching her battle with my Aunts about trimming her nails. For a brief moment, she stopped and looked at me. The moment of recognition in her eyes is still so clear to me. I know she knew who I was. She smiled. I remember sleeping between her and my Grandmother as a child. It is one of my favorite memories, the smell of their combined soaps and shampoos. I love that memory. My Aunts were surprised by the sudden change in her. One of my Aunts looked at me and looked at her and said, “I wonder who she thinks she is?” I look soooo much like her that I could have reminder her of herself or someone from her past, but I really believe she knew who I was. One of those Aunts has now did with Alzheimer’s. I told my children that I understand that Alzheimer’s is a nightmare for the one’s who love the person who has the disease, but it can’t be that bad for the one who has it. They do not remember what it was like before that moment. I am not saying that there are not moments like the one my Grandmother had, but based on what I saw, as long as my Grandmother was getting her way she seemed calm. For some reason, she always fought them when they cut her nails. If I should have to go like that I think it could be a blessing not to remember what I am missing out on or what I have done wrong. I watched my best friend of 19 years die with liver failure. I was one of his caretakers. He fought so hard with the things he felt he failed at. I would not wish that on anyone. Sometimes, I believe things might have been better had he not tried so hard to clear his conscience as he was getting closer to death. Sometimes the truth hurts worse that the illusion that is settled for during the resolution of the situation.

Again, thank you for your diligence in informing us of all that surrounds this mystery that is Alzheimer’s! Whether we have it early, on time (whenever that is), or never, I like to be prepared for any situation. One of my professors in my Thanatology class asked me once what I would do if I had genetics tests done to say if I had it or not. I told him that I am the type of person who would benefit from the diagnosis no matter which way the answer goes. I already know that it is in my family, so I would never pay for the genetics testing. I already talk to my children, now adults, about the topic. I like to tackle a problem immediately. I hate playing the wait and see game. Genetics testing for this problem does not fall into the need to know category for me. I am happy following your lead. You offer so much information that most doctor’s probably does not know as much information as your site has passed along. If it were looked at in it’s entirety, it would most likely be become the source for doctor’s as well as for those who are dealing with it. Congratulation’s on your recognition! Keep the information coming however it can be gotten.

Sincerely,
Abigail

1. Alzheimer's Speaks says:
  
  January 6, 2011 at 11:24 am
  
  HI Abigail
  
  It is so nice to hear from you. I’m glad you are enjoying the site and finding it helpful. I don’t have too much time to respond but I did want to mention that I would highly recommend you find yourself a geriatric specialist and a neurologist who specializes in memory loss. Also, you mention you were or had taken Benadryl. I was just at a conference last month which said they feel people with memory loss should stay away from Benadryl as it seems to spike memory problems. Just something to look into. If you haven’t yet, I might suggest you join the facebook group “Memory People” It is for those with early onset as well as caregivers. I think you might find it very insightful and helpful. The people in the group are extremely open and honest and knowledgeable.
  
  I have to run now, but I wish you the best of luck and I so thank you for your comments. I appreciate you taking the time to share with us.
  
  Lori
  
Danny Sheppard says:

September 19, 2011 at 7:32 pm

Of course, what a great site and informative posts, I will add backlink – bookmark this site? Regards, Reader

1. Alzheimer's Speaks says:
  
  September 19, 2011 at 10:48 pm
  
  Thanks Danny!
  
  Lori

NIDE