Sunday, September 9, 2007

Internet Support During The Diagnosis Process

Within the last year, when it became apparent that I had a condition that was possibly Parkinson’s Disease or another form of Parkinsonism, I had the overwhelming desire to communicate with other patients with these conditions.

Originally, my potential diagnosis was either Dopa-Reponsive Dystonia or Young Onset Parkinson’s Disease. Both of these conditions respond to Sinemet, but the conditions are caused by two different mechanisms.

The first message board that I signed up for was DRD Central. This board is a support system for patients who have been diagnosed with Dopa-Responsive Dystonia. Because I did not have a firm diagnosis for any condition, I was concerned that I might not be welcome to participate on the board. Those fears were abolished by the responses I received to my first posting. Not only was I welcome, but the others were more than willing to answer questions about their own experiences with the condition, which gave me a vast amount of information, to compare to my own symptoms. Along with the communication between others and myself, the ability to read old posts served as a resource for additional information. Because of my experience with this board, I am going to include a link in “Resources for PD, PD-Plus and other Movement Disorders”.

The next message board that I signed up for was YOPA, which stands for Young Onset Parkinson’s Association. This board is a support system for patients who are diagnosed with Parkinson’s Disease. Again, not having a confirmed diagnosis did not prevent this group of people from making me feel welcome on the board. In fact, several people who participate on the board do not have a diagnosis. The people who have been diagnosed with Parkinson’s Disease, are very open to answering questions asked by those who do not have a diagnosis. It is a very friendly board, and the people who participate, whether diagnosed or not, are always there to offer words of encouragement and wisdom. Additionally, this board also has a chat room, as well as a place to ask a pharmacist questions about medications. Again, I will include a link to this site in “Resources for PD, PD-Plus and other Movement Disorders”.

Although there are several other online groups I have joined, the one that I am most active in is Daily Strength. What is unique about this site is that there are multiple boards that consist of mental health conditions, numerous medical conditions, relationships, and multiple self-help boards. Most people who are looking to communicate with others who share the same condition will be able to find a board to suit their needs. I obviously have signed up for the Parkinson’s Disease Board.

Daily Strength also has some other unique features that really make it feel like it is a family of friends. In fact, many refer to other posters as their DS Friends. A person can keep an online journal that can be read by anyone, or it can be locked, allowing only designated DS Friends to read it. People reading the journal can offer a response into the journal. Additionally, personal messages can be sent to individual users. The primary feature that makes the site more welcoming is the ability to create a profile that others can view. This profile is the user’s personal introduction, and a person may provide as little or as much information about himself or herself as they wish. It is a wonderful sight, and a link will be provided in “Resources for PD, PD-Plus and other Movement Disorders”.

The internet can provide statistics, symptoms, causes, and other pertinent information about medical conditions. However, the information shared between people who have the same chronic condition, puts the internet information into a more personal perspective. It gave me the opportunity to compare my symptoms and experiences, with others who have first hand experience with how Parkinson’s Disease or Parkinsonism affects their lives. Words read on the internet are just words. Words read on a message board in response to a post you made, lets you know that you are not alone with your condition.

These boards have allowed me to make contact with other people who have had or are having a difficult time trying to obtain a diagnosis for a chronic medical condition. Most of these people are in the Parkinsonism category for a potential diagnosis, since these are the boards I often frequent. Additionally, I have met others outside of these boards, who suffer from other forms of chronic illness, who also have had delays in diagnosis due to various circumstances involving the medical community. Some of these people were eventually diagnosed with chronic conditions that are easily identified through appropriate testing. These people, as well as the people from the boards, served as additional inspiration when I decided to write this blog.

Educations about my condition from the shared experiences of others, as well as support and encouragement, are only a few examples of what these boards have brought to my life. The most important and comforting knowledge they have provided me, is that I am not alone with my condition.

I have been blessed with family and friends who are supportive and offer me encouragement, for which I am very thankful. As important as they are in my life, none of them understands completely how this condition affects my life. They do not have a form of Parkinsonism, so they are not able to understand entirely how this condition affects my life. Therefore, it is the people I have communicated with through these boards, who can advise, encourage, and offer complete understanding. This is because they also experience the effects of this condition in their lives. They are an important part of the complete support system that I am lucky enough to have.

Based on my experiences, I would recommend to anyone who is diagnosed with a chronic medical condition, or is facing a diagnosis, to find a support group. Internet support groups have the advantage of being available to those people who have mobility issues that prevent attending a support group in person. It is also a great way to take the initial step into the support group arena, for those who may be hesitant to attend a local support group in person. Finally, I cannot say enough about the education, encouragement, and support that is given by others who participate on these support boards. If nothing else, it gives you a place to go, that will remind you that others completely understand what you are experiencing.


Anonymous said...

Nicole, I want you to know that this topic you wrote about is right on target. Your writing is so clear and descriptive, so as to assist others facing neuro-degenerative diseases in a way they can really put into action. I am glad to see you using your talent for writing and care you show in others in this important work. Your writing is making a difference and I support you whole heartedly. Thanks again, Dan

Patient With A Plan said...

Dan, Thank you so much for your support. I believe that for those of us who are faced with a neuro-degenerative disease, support from various sources, is so important. It feels great to give something back, when I have been blessed by so many supportive people in my life. Thanks again for your continued support. Nicole