Sunday, October 28, 2007

Filing For SSDI / SSI Benefits

Because many patients with a chronic illness may have to file for permanent disability at some point, I thought it was important to add a post about the role the medical community plays in this process. Aside from that role, there are multiple ways that a patient can become prepared should the need arise to file for permanent Social Security benefits due to disability. In fact, many of the suggestions that I have previously posted can become key elements during the Social Security application and approval process.

When it was determined that it was time for me to file for permanent disability, I was not looking forward to dealing with Social Security. Most people have heard the numerous horror stories about denied claims, the appeals process, and the length of time it takes for approval, etc. Many of us even know someone who has been through the process and had trouble with getting their claims approved. These horror stories were the nexus of my fears about dealing with Social Security.

When I was ready to begin the process, I went to the Social Security Administration’s website, in order to find out what the process was for filing my claim. I was pleasantly surprised to find that a person can file the initial application for benefits right through the website. What I found out during the online application process is that the application is very long and detailed. Depending on the amount of information a person has, the application process is probably a two to four hour process. In my case, I have difficulties with sitting for extended lengths of time, so it took me two days to complete the application. Their process allows a person to save and return to the application as many times as needed, which was a redeeming feature.

Based on my experience, the following information needs to on hand, prior to starting the application process for Social Security benefits:

1. List of all physicians, including mailing addresses, telephone numbers, and associated dates of contact. (Approximate dates are appropriate. Example: from 01/01/01 thru 12/01/02) This list should also include physical therapists, mental health professionals, physician’s assistants, and any other medical professional / practitioner that the patient has had contact with.

2. Dates that chronic illness began, including various symptoms associated with illness onset

3. List of diagnostic tests, including dates and results

4. List of past and current treatments including physical therapy, prescription medications, surgeries, over the counter medications, etc.

5. List of specific limitations and symptoms that prevent a person from being able to work. Specifics are required and looked at very closely. (Example: how long can a person sit before having to get up and move around, distance a person can walk before taking a break, amount of time a person can stand, etc.)

6. Copies of as many medical records that a person can find.

The application for Social Security itself is the greatest indicator of the amount of detail that Social Security looks at when making a determination for benefits. The more details that supplied during the initial application process, the better the chances are that a claim may be approved. If Social Security determines that there is not enough information to confirm that a person is permanently disabled, the claim most often will be denied.

Although there are many more aspects involved with the Social Security process, I primarily want to point out how some of the suggestions I have previously written about can assist in the process. Let us look at the following:

1. Finding and establishing a good doctor / patient relationship with physicians – This is essential for a person with a suspected or diagnosed chronic illness, but it can also be the most important aspect when filing for disability benefits. Social Security makes contact with a person’s physician(s) both in writing and by telephone, in order to verify a person’s disability status. If a patient does not see a physician often or does not have a good relationship with the physician, the physician’s response to Social Security may not help with the claim, simply because the physician may not be fully aware that any limitations exist. My Primary Care Physician and I had discussed my health issues prior to me filing my application, and he was well aware that his input to Social Security was essential. Because I have a good relationship with my Primary Care Physician and see him on a regular basis, he had enough information about my conditions, symptoms, and limitations to confirm my disability status and back up his opinions.

2. Personal Medical Records File – The person who has copies of his / her own medical records already has a large portion of the information that the Social Security application asks for. This includes diagnostic tests, treatments, information on physicians, etc. Keeping a personal medical file is not only an asset when dealing with the medical community, but it insures that a person does not have to spend hours searching for critical information that essential when filing for Social Security benefits. Additionally, I was able to provide the records I had to Social Security immediately, which allowed them to begin their process of determining my disability status. I believe that being able to provide them with an almost complete set of my medical records, expedited the process, because they were not dependent on sending out requests to the many physicians I have seen or waiting for those records to be sent by my physicians. They would have only had to wait for any additional information that they may have thought necessary to make a determination. Of course, this is only my opinion based on my personal experience.

3. Personal Medical Journal - Keeping a personal medical journal is not only an asset during and after the diagnosis process, but it is a great resource for the person who is applying for Social Security Benefits. Although medical records are important, they may not reflect or detail all of a patient’s symptoms, daily struggles, or the effects that the chronic condition has on the patient’s life each day. Additionally, a personal medical journal is a first hand account about symptoms, dates when symptoms emerged, responses to treatments, and other aspects that may not make it into a physician’s medical records. My journal became my main source for detailing my conditions, symptoms, and especially the progression of those conditions. Although I did not submit my journal to Social Security, I did use the information to insure that the information I was submitting was accurate. If Social Security had denied my claim, I would have then provided my journal during the appeals process.

4. Copies of my written correspondence to my physicians – Written documentation became essential during the diagnosis process, but also assisted me during the Social Security Application process. As with my personal medical journal, I referred to my copies of written correspondence to assist with detailing my symptoms, significant dates, and for general accuracy purposes. Again, I did not submit these copies to Social Security, but would have included them during an appeals process.

The most important thing that I discovered is that no information can be withheld when filing a claim with Social Security. Too much information is better than not enough information when going through this process. For example, I remember how angry I was with some of the specialists’ opinions about my conditions in the early years, along with their written reports that they submitted to my Primary Care Physician. However, during this process their content became less important. The reports actually helped to establish that physical symptoms of chronic conditions existed, as well as a timeline of when I first began seeking treatment and a diagnosis for these conditions. Therefore, during the Social Security process, some records that I once felt were detrimental, became evidence that the onsets of my conditions occurred several years prior to any diagnosis. This information, along with more recent records that indicated the severity of symptoms progression, helped to establish the likelihood that my conditions were both chronic and progressive.

I was pleasantly surprised again when I went to deliver my medical records to my local Social Security office, the day after I submitted my application via the internet. The man I met with was polite and informative. He assisted with helping to fix a problem with the records of my past earnings in order to insure that my award amount was correct in the event that my claim was approved. Additionally, he made sure that I had his contact information in the event that I had any further questions while waiting for a determination on my claim. Almost four months later, this same man called me on a Saturday to let me know that Social Security approved my claim, and advised me of additional documentation that I needed to bring into the local office as a result. Again, I was very amazed.

In my opinion, my experience with Social Security was remarkable considering all of the horror stories out there. I believe that the following factors may have played key roles during the claim process:

1. I have two diagnosed conditions that are considered as qualifying conditions for permanent disability by the Social Security Administration.

2. I have at least seven years of consistent visits to my Primary Care Physician and multiple specialists for diagnostic and treatment purposes.

3. I took extra time to provide as much detailed information as possible while filling out the online application, including information on other minor health conditions not directly related to the two chronic conditions.

4. I had 100% support from my Primary Care Physician who had full knowledge of my past medical history as well as my current conditions, and how these conditions affect my daily life.

5. I made certain that Social Security had access to as many medical records as possible.

6. I made sure that the person, outside of the medical community, who knew the most about my conditions and the associated disabilities, was the person who could best support my claim of permanent disability if contacted by Social Security.

Prior to applying for benefits, I came across an internet site that clearly outlines the Social Security claims process. This site gives complete information on the entire process including application, denials, appeals, hearings, etc. It offers information about legal resources, how Social Security determines if a person is disabled, and answers many common questions that come up during the process. It is one of the best resources out there for anyone who may need to apply for SSDI or SSI benefits. I will include a link to this site under the “Resources for PD, PD-Plus, and Other Movement Disorders” section.

It was a blessing that my experience with Social Security went as smooth as it did. It alleviated the potential for additional stress in my life, which has a tendency to affect my condition in a negative manner. I hope that by sharing my experience and the information that I found valuable that someone else might also have a good experience when dealing with Social Security. My positive experience may have been the result of the depth of information supplied to Social Security, a little help from the Lord, or a combination of both. Regardless, attention to every detail and a little prayer, cannot hurt when dealing with the Social Security Administration.

Thursday, October 18, 2007

The Sleep Study

Although I originally added this information on the “My Personal Medical Journal September & October 2007” post, I decided that it was significant enough to expand on.

Several years ago and prior to any symptoms of Parkinsonism, I began having various symptoms related to sleep disorders. In my late teens I began having sleep paralysis, which is described as paralysis upon sleep initiation or awakening which can include visual hallucinations. Additionally, I began to have sudden onset sleep attacks, excessive daytime sleepiness, and minor cataplexy-like episodes about five years ago. These are all listed as symptoms of Narcolepsy. Also, in my late teens I began having episodes where I would act out my dreams by talking, screaming, kicking, hitting, running motions, etc. This is characteristic of REM Behavior Sleep Disorder. These problems still exist.

Since the onset of my motor symptoms, I now experience intermittent insomnia. Additionally, I also have multiple nocturnal awakenings that occur on a nightly basis.

The reason I decided to give this topic its own post, is because sleep related disorders are very common in both Parkinson’s Disease and Parkinson-Plus Disorders. Although I am not a foremost expert on this, I will offer the information that I now know, based on my internet research. The Parkinson-Plus Disorders that I do not mention, are those which I have not done adequate research on.

1. Narcolepsy has been specifically linked to Parkinson’s Disease. Narcolepsy can pre-date the onset of Parkinson’s Disease symptoms by several years.

2. REM Behavior Sleep Disorder is common in Parkinson’s Disease, Progressive Supranuclear Palsy, and Multiple System Atrophy. Some literature states that up to 80% of patients who have Multiple System Atrophy, also have REM Behavior Sleep Disorder. REM Behavior Sleep Disorder can pre-date any form of Parkinsonism onset by several years.

3. Insomnia is common in Parkinson’s Disease, Multiple System Atrophy, and Progressive Supranuclear Palsy.

4. Sleep Fragmentation, which is defined as multiple nocturnal awakenings, are common in Parkinson’s Disease, Multiple System Atrophy, and Progressive Supranuclear Palsy.

5. Sleep Apnea / Hypopnea is more common in Multiple System Atrophy and Progressive Supranuclear Palsy, than in Parkinson’s Disease.

Although there are numerous additional manifestations of sleep disorders in Parkinsonism related conditions, these exemplify the more common ones. Based on the information I have found, I can fully understand why my Movement Disorder Specialist wanted to confirm or rule out REM Behavior Sleep Disorder and Narcolepsy. The following is my recent experience with a sleep study that was done, which was supposed to determine whether or not I have these conditions. It is a duplication of the original post.

I went for a sleep study on the 9th, which was intended to confirm or rule out REM Behavior Sleep Disorder and Narcolepsy. Sleep disorders are common in Parkinson's Disease and Parkinson-Plus Disorders. Unfortunately, it is my opinion that the wrong type of study was done. I am not a doctor, so I plan to confirm this with my MDS in two weeks.

There are two main types of Polysomnograms that can be done, according to the information I found on the internet. One is specifically used to determine if sleep apnea is present. Basically, a patient is wired up with sensors and goes to sleep. After about 90 minutes, the patients is told to change sleeping positions. (Example: switch from sleeping on the back to sleeping on the side) After an additional 90 minutes the patient is awakened and fitted with a mask that is connected to a C-Pap machine. The patient goes back to sleep and is monitored while using the C-Pap machine. The second test is geared more toward ruling out REM Behavior Sleep Disorder and as part of the testing for Narcolepsy. The patient is still wired to various sensors, but is never awakened throughout the night or hooked up to a C-Pap machine.

I was given the first test. The problem with this is that I never entered into REM sleep during the test, due to frequent nocturnal arousals, as well as being wakened every 90 minutes. Therefore, having never entered into REM Sleep, it is my understanding, that it is impossible to determine if I do have REM Behavior Sleep Disorder. Additionally, because the second test that is used in conjunction with a Polysomnogram for ruling out Narcolepsy was never done, it is impossible to determine whether or not I have Narcolepsy.

The only information that was gained by the test that was performed, is that I have multiple episodes of "hypopnea" while I sleep. In general terms this means that I have episodes of shallow breathing of less than 50% of normal, that cause arousals during sleep. Unlike true apnea, I do not stop breathing altogether. It also confirmed that I have multiple nocturnal arousals of unspecified origin that occur. These unspecified arousals continued even while attached to the C-Pap machine. Additionally, my sleep onset latency time indicated excessive sleepiness, and I only achieve 61% sleep efficiency. Normal sleep efficiency is 85%.

Again, I am not a doctor, but after researching my results on the internet, they raised more questions than there were prior to the sleep study. For example, apnea-hypopnea episodes are common in Multiple System Atrophy. These episodes can be decreased with anti-Parkinson medications, which I do take at night. This raises the question of whether or not the episodes would have been more numerous or severe had I not taken my medications the night of the sleep study. Frequent nocturnal arousals are common in both Parkinson's Disease and Parkinson-Plus Disorders. One of my original complaints was excessive daytime sleepiness, which the sleep onset latency time and the sleep efficiency percentage both support. Unfortunately, there is now no determination on the REM Behavior Sleep Disorder or Narcolepsy, but also no real explanation on what these results mean in terms of my condition.

I fully intend to bring these issues up with my MDS for her interpretation. If I am correct in the opinion I have made based on my research, a second sleep study will need to be done. It angered me quite a bit, because I had raised the question about the type of study being done, a week prior to the appointment. I was told that this is the standard test. I now believe that I was misinformed.

As I have stated previously, I am not a doctor. I reached my opinions after doing research on the internet. I will depend on my Movement Disorder Specialist to determine if my opinions are correct. Once I am able to speak to her, I will update this post with that information. Even if the two main issues were not resolved with this sleep study, I am hopeful that the information that was gathered may help her better determine which form of Parkinsonism I have. I will know more about all of these issues in two weeks.

Organizing Your Personal Medical Files

Although this topic does not really affect directly how a patient deals with the medical community, I thought that it might be of benefit to share how I maintain my personal medical files.

I have two main conditions that affect my daily abilities. For better understanding, these conditions are severe enough that each are considered a disabling condition. Additionally, I have a few minor conditions that while not disabling, are surely affected by the two major conditions. For example:

Parkinsonism – major condition causing disability
Degenerative Joint Disease of the Spine – major condition causing disability
Osteoarthritis (knees) – minor condition not causing disability
Bursitis (hip) – minor condition not causing disability
Restless Leg Syndrome – minor condition not causing disability

Each patient’s medical condition(s) is / are unique to him / her. One patient may be dealing with one major chronic condition only, while another patient may have more than one major chronic condition. If a patient has additional minor conditions thrown into the mix, the variables are endless.

Based on my conditions above, I created a filing system for the sole purpose of quick and easy accessibility. Because I am dealing with more than one condition, I have a large quantity of records. While all of these records are important, not all of these records need to be provided to each physician. Therefore, due to the number of conditions I have been diagnosed with, plus the large volume of records associated with these conditions, I came up with the following file system:

File #1 – Complete set of all medical records in my possession

File #2 – Complete set of all medical records relative to Parkinsonism; includes any reports from specialist during the diagnosis process, diagnostic tests done to rule out other disorders, a copy of any related written documentation, and copy of personal medical journal entries that relate to Parkinsonism.

File #3 – Complete set of all medical records relative to Degenerative Joint Disease of the Spine; includes any reports from specialist during the diagnosis process, surgical reports, diagnostic tests, a copy of any related written documentation, and copy of personal medical journal entries that relate to the spine.

File #4 – Complete set of all diagnostic tests, regardless of type or conditions associated with these tests

File #5 – Complete set of all types of written documentation; includes written correspondence and personal medical journal.

Here is how this filing system assists me with quick and easy access to specific records. I will refer to the file number followed by a brief explanation for the purpose of that file.

File #1 – If I were to find myself in the position of having to see a new Primary Care Physician, that physician will need to have a complete set of my records. Although the physician’s office personnel would likely send out for copies of my records, the ability to offer the majority of my records during an initial appointment could give the physician a jumpstart on becoming familiar with my health related issues. Additionally, during an initial diagnosis process for an unidentified condition, a specialist should be provided a complete set of records, especially any results from diagnostic tests. This complete history, in addition to the exam, will assist the specialist who is attempting to determine a potential diagnosis and the course of action necessary to reach a diagnosis.

File #2 – Once a confirmed diagnosis of Parkinsonism was given, any specialist who I see now or will see in the future, only needs those records that are specific for Parkinsonism, unless otherwise requested. I have found that verbal information given to a specialist about other unrelated conditions is usually sufficient.

File #3 – Once a confirmed diagnosis of Degenerative Disc Disease of the Spine was given, any specialist I see in the future will only need those records that are specific to my history with this condition. This includes all documents related to diagnostic testing, and in my case, two surgeries. Again, I have found that verbally communicating the other unrelated conditions to a specialist is usually sufficient.

File #4 – Although this file comes in handy primarily when dealing with a new “unknown” potential chronic condition, I continue to keep this file for my own easy reference. For example, I will occasionally think about something I want to research about my conditions, and many times will pull my diagnostic test results for the correct medical terminologies or because it pertains specifically to the actual information on a specific diagnostic report that I want to research.

File #5 – This file gives a running history in writing and from my perspective, about every aspect of my health. It includes chronological information that can be used to gauge progression as well as the length of time that each condition has existed in my life. This information is invaluable not only when dealing with the medical community, but also when dealing with Social Security.

Essentially, I created my files based on my own experiences, which included the many specialists I have seen and what type of information each specialist required. Additionally, the documents in each file are arranged in chronological order by date, with the most recently dated document in front. I found that this not only assists me, but also assists a specialist who can look at my medical records from the beginning to the present, in chronological order. Again, each patient’s medical history is different. In my case, my system helps me spend less time figuring out what to give to a particular specialist, since I have created condition specific files. I only need to grab the file, make a copy, and proceed to the appointment. I do not have to spend hours digging through all of my records trying to determine which ones to provide to a specialist. Finally, I do not end up providing information overload to a specialist; by including information that is not relevent to the condition that specialist treats.

I have found that organization has become a key benefit for me, and it is just another aspect of dealing with my chronic conditions. It saves me time, which allows me to focus on the more important things in life.

Friday, October 12, 2007

The Importance of Keeping a Personal File of Your Medical Records

Up until five years ago, I never gave my medical records any thought. I presumed that those records were important references for my Primary Care Physicians, and that they held no benefit for me. This perception was not only naïve, but very incorrect. In time, I would discover that having copies of my own medical records enabled me to maneuver more quickly and efficiently within the medical community.

My education on the importance of my medical records was a slow and painful one. Early on I recall having initial visits with specialists as being non-productive, because the specialists required information contained in my medical records, which had either not been provided or were not given to me to take with me to the appointments. This resulted in wasted time, not only for me but also for the specialists. Other than a routine exam and requesting basic diagnostic blood work, often no further evaluation was done until the specialists had my records. Additionally, if the specialist’s office requested my records, additional time was added between the initial appointment and a second appointment.

This scenario served as my first lesson in my education. It only took a few of these initial appointments before I decided I was not going to allow this scenario to occur again.

I began preparing for an initial visit with a specialist on the same day it was determined that I would be referred to one. If my Primary Care Physician referred me to a specialist, before leaving his office I would talk to one of his office staff about getting copies of my medical records for the visit. Often the staff person would tell me that they would send the records to the specialist prior to my appointment. I would then tell the staff person that I preferred to hand carry my records with me to the appointment. Taking my own medical records with me to an appointment with a specialist provided a guarantee that the specialist would receive them.

Taking my medical records with me worked like a charm. As time moved forward, another scenario began to emerge. As I was going through the referral process from specialist to specialist, I was not getting any closer to finding any answers to my medical issues. This applied to both my spinal problems as well as the Parkinsonism. Additionally, each time I was referred to a new specialist, my Primary Care Physician’s office staff had to make the same copies of my medical records for every new specialist. Therefore, I decided that whenever I received copies of my medical records to give to a specialist, I would make a copy for my own personal records, prior to handing then over to the specialist. Additionally, anytime my Primary Care Physician sent me out for new diagnostic testing, I always requested a copy of the results for my personal records. Some of the benefits of doing this are as follows:

1. Eliminated the need for my Primary Care Physician’s staff from having to make copies of the same information each time I saw a new specialist; they only had to provide me with any records that were in addition to the ones I already had in my possession.

2. Allowed me flexibility when I found it necessary to see a specialist outside of my insurance without having to inform my Primary Care Physician prior to doing so.

3. Allowed me direct access to the medical terminologies that were being used in reference to my health, which allowed me to research my own health on the internet; this contributed to a better understanding of potential conditions and assisted with my ability to communicate with the specialists in an educated manner.

4. Allowed me to research various topics, conditions, etc., based on the information in my medical records, that were possibly associated with my symptoms; this provided enough education to have the ability to recognize when a physician made statement that were contrary to known facts.

5. Allowed me to compare what was in writing versus what may have been communicated verbally during an appointment.

This method worked for quite some time until I was faced with the inability to continue in the workforce. My initial intent was to discontinue working, only temporarily, while I went off my medications in order to obtain a diagnosis. So, initially I filed for short-term disability through the state. This process did not require me to provide medical records. It was only necessary to fill out a form and have my Primary Care Physician fill out a form as well. I received approval for my claim, and I was relieved to be able to concentrate on my health, without having to worry about a loss of income.

Approximately two months later, the state sent me a letter stating that a neurologist of their choosing must evaluate me. I will not go into any detail about my experience with that visit, except to say that it was a waste of taxpayers’ money. What I will elaborate on is the fact that I now had to obtain all of my medical records that pertained to my medical conditions, without exception. Up to this point, the only medial records that I was keeping for my personal files were the records I had received from my Primary Care Physician, which did not include any reports from past visits with specialists. Again, until faced with this new scenario, it never occurred to me that I should probably have copies of my medical records from every specialist who had evaluated me. I now had to contact each specialist’s office, request the records, and pay for the records. Since I had to provide these records to the state appointed neurologist, I made sure that before I provided her the copies, I made copies for my own personal files.

The situations that I encountered throughout the last five to ten years provided the lessons I needed to learn about the importance of having copies of all my medical records for my personal files. Of course, there are some missing pieces in my personal files, because it was difficult to recall every doctor I had met over the last ten years. Therefore, I have a set of medical records, that are as complete as possible, and I continue to add to them as necessary. Building my personal medical files became my greatest asset when I came to the realization that I was no longer able to be in the work force permanently. With this realization, I was fully aware that it meant that I would now have to deal with Social Security. Like many others who find it necessary to file for permanent disability through Social Security, I did not look forward to the task.

I began the process of filing my application for Social Security. I was very pleased to discover that I could complete the initial application online. Although I will detail the Social Security process on a future post, I would like to address the important part that my personal files of my medical records played in the process. Because I now have the majority of my medical records in my possession, I was able to provide Social Security the entire portfolio of my medical history. I believe that providing my medical records when I filed the initial application decreased the length of time I had to wait before I received a determination from Social Security.

Every patient has a right to request copies of their medical records. When a patient makes a request for their records, he / she will normally be required to fill out a request form. Additionally, I did find that most physicians charge a fee to the patient for providing the patient with copies of their records. The fees vary, but I found that many charged a fee per page. (Example: 25 cents per page) Some physician’s offices will make the copies while the patient waits, while others will provide the patient a future date to return to pick up the requested copies. Each physician’s office has its own policies.

In a future posting, I will address how I have set up my personal medical files. Although each patient’s situation is different, the patient with a chronic condition will more than likely have a large medical records file. Additionally, patients with multiple conditions will have an even larger medical records file. Therefore, I fine tuned how I have my medical records organized, based on my two main chronic conditions. Keeping my records in an organized filing system has proven to save time and has added convenience when I must access my files.
The point I want to make in closing is this: If you are a patient, who is in the diagnosis process or already has a diagnosis, make time to create your own personal medical files. There is a high probability that a chronically ill patient will need to provide medical records to various entities. The patient should take a proactive approach, and have those medical records in hand, so that he / she is not dependent on people in the medical community to provide those records in a timely manner. This is just another way in which a patient can take charge and become his / her own advocate, with respect to insuring that his / her medical needs are met in a timely and efficient manner.

Tuesday, October 2, 2007

The Importance of Keeping a Health Journal

Over the years, I have had multiple symptoms for various conditions, and I have been evaluated by a variety of physicians for these symptoms and conditions. With this in mind, it is impossible for me to remember each symptom and its date of onset. Additionally, it is also impossible to remember all of the details surrounding the various conditions I am either diagnosed with, or the individual diagnostic tests and dates for numerous probable conditions that have been ruled out along the way. With respect to both symptoms and conditions, although I may remember the names of physicians who have evaluated me, I cannot rely on my memory for the dates of these visits or the outcomes. Therefore, although I have always prided myself on the ability to rely on my memory, I did discover that even the best memory is incapable of keeping track of all these issues. This is certainly true for someone who has been experiencing symptoms and searching for a diagnosis for any significant length of time.

Whether a patient has been diagnosed with a chronic condition or is still in the diagnosis process, keeping a health journal is a great way to document the patient’s health history. There are several benefits to keeping a health journal, which include the following:

1. Establishes a timeline for the initial onset of symptoms, which can be critical when seeking a diagnosis for certain conditions

2. Establishes a timeline for progression of symptoms as each new symptom is documented, or established symptoms worsen

3. Can be used as a tool for the patient to recall specific events that need to be discussed with a physician during an appointment

4. Can be used as a tool for physicians, if the patient has provided him / her a copy

5. Establishes a running history of diagnostic tests for conditions that have been ruled out or confirmed.

6. Establishes a running history of treatments for known conditions, as well as treatments for symptom alleviation where a cause has not yet been determined

7. Can be a great asset for the patient who is filing for disability benefits, again because it establishes a timeline and documents progression of the chronic condition

There are several methods that a patient can use when keeping a health journal. Some methods are better than others are, and I have tried quite a few. I now use a combination of two methods with respect to my journals, so I will share those methods. Essentially, there is not a right or wrong way to keep a journal as long as essential information is included. Some examples of essential information are:

1. Date of journal entry

2. Description of topic – new symptom, changes in established symptom, reaction to medication, outcome of a visit with a physician, etc.

3. Complete explanation about the topic which answers the basic questions of what, where, when, how, and why, although not all of these are applicable to every topic. (Example: Where was the patient when the new symptom emerged? How long did the new symptom last, or is it ongoing?)

4. Notations on telephone conversations with physicians or office personnel in the physician’s office – include date, time, topic, and follow-up information

The first type of health journal that I keep is a journal that I write in only as new issues come up. Although my symptoms change from day to day, I do not write in the journal daily, because the day-to-day changes in symptoms are typical of my condition. Actually, the symptoms can change from minute to minute, but again, this is typical for my condition. I use my journal to document new symptoms, changes in how my medications affect my symptoms, appointments with physicians, and any significant change in condition that may be of importance.

In the beginning, I began writing in the journal daily, but I found that this only added additional material for reading without offering additional benefit or information. Because I often will provide my Primary Care Physician with a copy of sections I think he needs to see, I wanted to insure that the amount written was not overwhelming. Therefore, by only writing about significant changes / events, I believe I increased the likelihood that my physician will take the time to read what I have provided to him. Besides, I am one of those people who just cannot stick to writing in a daily journal, regardless of the topic.

The second type of health journal is probably better referred to as a complete “list” of all health related issues. This “list” begins with my first surgery when I was seven years old, and it continues through today. Included on this list are major illnesses, symptoms, surgeries, medications (past and present), etc. I created this list in 2001; therefore, any information prior to 2001 came from memory recall. Although I am certain that there have been some omissions due to faulty memory, this list contains approximately 95% of all issues pertaining to my health. The following is a sample of how my health related issues are noted in this journal:

1976 – Tonsillectomy and Adenoid removal at 7 years old

1984 – Walking Pneumonia at 15 years old

1988 thru 1989 – First pregnancy w/ multiple complications including pre-term labor and premature delivery at 33 weeks gestation. 19-20 years old (Terbutaline prescribed throughout pregnancy for pre-term labor and Magnesium Sulfate administered in hospital to stop active labor at 26 weeks gestation.)

October 14, 2003 – While walking for exercise, I noticed that my right arm no longer swings while I walk.

Most of my health related entries are one-lined notations, with the exception of major surgeries or illnesses. My entire health history is now summarized in date order, on four pieces of paper. If more in depth information is required, my alternate journal can provide the additional details.

The benefit from this type of health journal or “list” is it enables me to hand my physician(s) a few sheets of paper that gives an almost complete history of my health. It provides the dates (approximate dates prior to 2001), the medical events, and the results if any. Not only does my journal (list) include my symptoms pertaining to my current diagnosis of Parkinsonism by date of onset, but it also includes unrelated symptoms and information, that may be of importance for a physician who is looking at the entire picture, when trying to make a more precise diagnosis. The physician may see an event on my list that occurred ten years ago, prior to the onset of my symptoms of Parkinsonism, which may actually have been an early potential indicator for one of the various forms of Parkinsonism. This entire picture may help my physician during the process of trying to determine which form of Parkinsonism I have.

I maintain my journals on my computer and keep a printed copy in my own personal medical file. I have found that by using the computer, I can print out specific entries easily, to forward to my physician(s) as needed. If I am ever unsure of an event related to my health, I have easy access to my history. Additionally, based on the methods I use, it takes very little time to add new information to the journals. The little extra effort to track my medical health accurately through my two journals became a great asset during my diagnosis process. I have the security of knowing that I have the ability to provide a complete medical history to my current or future physician(s), without the potential to leave out essential information.

As I have stated in previous posts, written documentation is a key factor when dealing with the medical community. My journals make up a large portion of my written documentation. My journals are just as important as my written communications with my physicians. The same theory holds true for both. Verbal information can be challenged, but written information through appropriate documentation / communication is unlikely to be questioned. Keeping a health journal adds yet another level of security and helps increase the odds, for the patient who is searching for a diagnosis.