Like many other Americans, I can remember exactly what I was doing when word came that a plane had crashed into the World Trade Center. Obviously a terrible accident had happened and we rushed to a TV at work to see what had happened. We were both saddened and amazed at what was unfolding from this 'accident' when the second plane became visible. I will never forget the shock and disbelief as the second plane hit the tower. The absolute sickening feeling that overwhelmed me at that moment is still fresh after 6 years. This was not an accident. It was deliberate, a horrifying disregard for human life that haunts all of us so many years past the initial shock. I can only imagine what it was like for those involved.
Please pause for a moment to remember..... and to pray that this never happens again.
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Cruising in St. Thomas
This blog is written by a person with Dementia.
This blog is written by a person with Dementia.
Blog Archive
About Me
- Duchess
- I am a 61 year old PWiD (person with dementia)of the Alzheimers type. We recently moved to Ohio because we realize we will need to be near our family, and because I just can't stand to be so far away from my family and friends anymore. I lived in Florida for 22 years, having gone there for a wonderful job opportunity. My job was managing the computer systems for the Dept. of Pharmacy for one of Orlando's largest hospitals, along with 6 additional campuses. It was a very demanding position and due to the effects of this disease, I medically retired in 2004. I am married to a wonderful man and together we have 6 children and 8 grandchildren. The purpose of this blog is to journal my thoughts through this disease process.
Duchess (aka Jean)
Cruising in St. Thomas
1 comment:
Dear Duchess,
My name is Serguei Pakhomov, and I am a researcher at the University of Minnesota. I have come across your blog while looking for first-hand accounts of the experiences of people diagnosed with Alzheimer’s disease and related conditions. I am currently conducting a research study at the University of Minnesota designed to analyze language use patterns as a way to characterize the early onset and the progression of Alzheimer's disease over time. I am currently looking for people who have been diagnosed with Alzheimer’s disease (AD) or Mild Cognitive Impairment (MCI) who would be willing to share their personal writings created before and after the diagnosis. Your blog is one example of such personal writings. Other examples may include diaries, letters, sermons, drafts of publications (published or unpublished), etc. Part of this project is to transcribe handwritten writings into electronic form to enable automated analysis. The main condition is that these writings must not be edited by anyone other than the person who created them. Having looked at your blog, I think it would be ideal for this study and would like to ask for your permission to use it in my research. If you have additional samples of your personal writings (electronic or handwritten) that pre-date the blog and you are willing to share them, I would appreciate a permission to use them as well. If you only want to share the blog but nothing else, I would certainly understand that too. Also, I will completely understand if you are not willing or unable to share any of these materials, as I would like you to feel comfortable with your decision.
If you agree, I would ask you to read, print out, sign and return the consent form attached to this letter via regular mail to the following address:
c/o Serguei Pakhomov, PhD
Pharmaceutical Care and Health Systems
University of Minnesota
7-125F Weaver Densford Hall
308 Harvard St. SE
Minneapolis, MN 55455
or by fax: (612)-625-9931
If you choose to participate in this study, the consent form must be signed and dated either by the participant (you) or by an authorized representative of the participant. The consent form contains contact information in case you have questions or concerns that you would like to discuss. This consent form does not obligate you to send any additional writing samples, unless you chose to do so, and you can also choose not to participate at any time – now or later. If you chose not to participate, none of your personal writings including your blog will be used in this research.
If you happen to know of anyone else who may have an interest in participating in this study, I would appreciate it if you could forward this information.
I would really appreciate your help.
Sincerely,
Serguei Pakhomov
Assistant Professor
Department of Pharmaceutical Care and health Systems
University of Minnesota, Twin Cities
------------------------------------
CONSENT FORM
Automated Measures of Linguistic Ability of Patients with Cognitive Impairment
You are invited to participate in a research study of the relationship between a person’s language patterns and the risk of developing Alzheimer’s disease. You were selected as a possible participant because the information you have made available on the internet indicates that you have been diagnosed with Alzheimer’s disease or a related disorder.
As you read this form describing the study, ask any questions you have. Take your time to decide. Feel free to discuss the study with your family, friends, and healthcare provider before you decide. You may stop participating at any time during the study. You may decide not to participate. If so, none of your current benefits or normal health care will be affected in any way. When you feel comfortable that all your questions have been answered, and you wish to take part in this study, sign this form in order to begin your participation. If you are agreeing for someone else, you need to sign this form. Your signature means you have been told about the study and what the risks are. Your signature on this form also means that you want yourself, or your child/relative/principal/ward to take part in this study.
This study is being conducted by Dr. Serguei Pakhomov, Ph.D., an Assistant Professor of Medical Informatics in the Department of Pharmaceutical Care and Health Systems at the University of Minnesota. It is funded by a grant-in-aid of research from the University of Minnesota.
Background Information
The purpose of the study is to determine if language use patterns may be used to identify very early signs of cognitive decline that’s different from normal aging.
Procedures:
If you agree to participate in this study, we would ask you to provide as much archived personal writing material (e.g. public speeches, papers, religious sermons, published and unpublished works of literature and science, internet blogs, letters, etc.) as you are comfortable with sharing. We will ask you to provide only the materials that were written by you and were not edited by someone else. These materials may be in hand-written, typed or electronic form. We will study language patterns as they develop over time, so we will ask you to provide records dating as far back in time as you can find. They will be collated and if necessary transcribed word-by-word by our study staff and stored in a secure password-protected location. We will only store the photocopies of these materials. The originals (if any provided) will be returned to you as soon as they have been photocopied. The photocopies will be stored in a secure location accessible only by the authorized study personnel. These materials will then be analyzed to determine language use patterns.
Participation in this study consists only of providing the above-mentioned materials. There is no further participation. You will not be asked to take any additional tests or procedures as part of this study.
Risks and Benefits of being in the Study
The only risk of this study is potential loss of confidentiality; however, this risk is minimal as we will make every effort to protect the confidentiality of your information by implementing strict data security measures and appropriate training of our staff.
This study will not make your health better. It is for the benefit of research. There will be no direct benefits to you from participating in this study.
Confidentiality:
The records of this study will be kept private. In any publications or presentations, we will not include any information that will make it possible to identify you as a subject. Your record for the study may, however, be reviewed by departments at the University of Minnesota with appropriate regulatory oversight. The study information will not be recorded in your medical record. To these extents, confidentiality is not absolute but we will make every effort to protect it.
Only the authorized and trained study staff who will be transcribing the original materials provided by you may have inadvertent access to identifying information and only in the event that such identifying information (e.g. first and last name) is present in the provided materials. You may choose to remove any such identifying information prior to providing these materials to us. The transcriptionists will be instructed to remove any such identifying information as part of the transcription process as well.
Voluntary Nature of the Study:
This study is only being done to gather information. You may choose not to take part in this study. We appreciate your help and hope you will consider participating in this study; however, participation in this study is voluntary. Your decision whether or not to participate will not affect your current or future relations with the University of Minnesota. If you decide to participate, you are free to withdraw at any time without affecting those relationships.
Contacts and Questions:
The researcher conducting this study is Dr. Serguei Pakhomov, Ph.D. You may ask any questions you have now, or if you have questions later, you are encouraged to contact them at (612)-624-1198 (e-mail: pakh0002@umn.edu)
If you have any questions or concerns regarding this study and would like to talk to someone other than the researcher(s), you are encouraged to contact the Research Subjects’ Advocate Line, D528 Mayo, 420 Delaware St. Southeast, Minneapolis, Minnesota 55455; (612) 625-1650.
You will be given a copy of this information to keep for your records.
Statement of Consent:
I have read the above information. I have asked questions and have received answers. I consent to participate in the study.
Signature:_____________________________________________________ Date: __________________
Signature of parent or guardian:________________________________ ____ Date: __________________
(If minors are involved)
Signature of Investigator:_________________________________________ Date: __________________
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