Monday, March 31, 2008

The Importance of Having an Advocate

There were many times along the road to diagnosis when just the thought of seeing a new specialist would bring thoughts of fear and dread. On one hand, the desire to find answers would give me hope; on the other hand, the thought of being brushed off would bring intense anxiety, dread, fear, etc. Going through any diagnosis process can create an emotional yo-yo effect that is often worse than the symptoms being seen for.

For many years I went to my appointments with my doctors alone, armed with my list of questions and previous records. My ex-husband accompanied me to two appointments, because I was hoping for back-up when describing my symptoms. During the first appointment, he lost his temper and stormed out of my doctor’s office. This surprised me, because this was my General Practitioner who later retired, and I always felt he had my best interests in mind. The second visit he attended was when I saw a neurologist who stated that my symptoms were most likely due to depression, but that I did not realize that I was depressed. Although my second husband did not lose his temper this time, neither did he question or outright state that the neurologist’s opinion was out of line. I left that appointment in tears. My ex-husband just stated that I should see a different neurologist, and that he was not interested in going to any future appointments.

As time moved on, unfortunately my marriage did end. As I have written in previous posts, I am remarried to a man who has played an important role in finally receiving a diagnosis. Not only did my husband insist on being at every doctor’s appointment, but he did hours of research, so that he could competently talk with the many doctors we saw. It was my husband who was able to connect the dots of my symptoms. He had to ability to explain to the doctors how my symptoms resembled the symptoms that his mother experienced with Parkinson’s Disease. He has often been my voice when I have had difficulties explaining my perspectives, and his keen observations of my health changes and his ability to verbalize his observations, were the catalyst that increased the momentum in getting to a diagnosis. I truly believe that had he not taken the initiative to support me in this manner, I may have not received a diagnosis for at least two more years.

An advocate can serve many purposes when visiting with a doctor. This person can serve as a second set of ears, offer observations that may not be evident during the actual exam, and can be a second voice when asking questions during the visit. Most importantly, an advocate can be a great comfort to the patient during these very stressful visits. An advocate should be someone who sees you often enough and can fully describe the symptoms or changes that he or she has observed. In addition, it does help if this person is not easily intimidated, especially if the patient is dealing with a doctor who does not like to be challenged or questioned.

A spouse or significant other can obviously be a great choice as an advocate. Unfortunately, there are those times when a spouse or significant other may not be the best choice due to various circumstances. Other candidates can include a close relative or friend who sees you on a regular basis, and who has known you for many years. This person will have the ability to describe you and your lifestyle prior to and after the onset of symptoms. Additionally, this person should be someone who has a deep desire and level of concern that is sufficient enough to compel them to become a partner in your search for a diagnosis. This requires that they be willing to educate themselves along side you, so that they may be an efficient source of support in the doctor’s office environment. Here are some examples of how my husband acted as an advocate:

1. Researched my symptoms and possible causes

2. Made the association between my symptoms and Parkinson’s Disease based on personal
experience, as well as follow-up internet research; outlined this observation in a manner to my General Practitioner which enabled me to try a trial prescription of Sinemet

3. Created a list to submit to the doctors that included his observations of my symptoms, abilities, etc. that outlined a comparison between what he observed prior to symptoms and after the symptoms began.

4. Readily spoke up, based on facts known through research, when a doctor stated something contrary to those known facts.

5.Often spoke on my behalf if I became too “emotional” during the visit, in order to insure that the doctor did not arbitrarily throw out a mental health diagnosis, based upon the fact that I had become emotional.

6. Often asked questions that I either forgot to ask, or that he felt were important enough to ask; often these were questions I had not thought about asking.

7. Never wavered in his opinion or responses, especially if a doctor was going down a trail that had already been covered or appeared to go down the mental health road.

8. Never allowed me to personally throw in the towel after an especially emotional or disappointing visit; continually reminded me that the answers were already there, and that the only missing factor was the appropriate specialist.

I have found that having an advocate with me changed the dynamics of a visit with the doctor in many positive ways. Because the diagnosis process is so very stressful, just having the comfort of knowing that someone who cares about you is by your side, lessens the tension and fear factor. I also notice that a doctor will often pay more attention to what the advocate has to say than the patient, especially when a doctor wants to lean toward a mental health related diagnosis. A strong advocate can actually sway the opinion of the doctor in a more appropriate direction, especially if the advocate is well spoken and speaks purely in factual terms. I remember once when I had to see a specialist alone, because my husband had a business meeting and was unable to attend. That particular specialist seemed genuinely disappointed that my husband was not with me, because they had shared in depth discussions on PD related illnesses on previous visits. My husband had a better relationship with my specialist than I did, because he seemed to be able to talk the doctor’s talk, but this was a situation that was to my benefit. Although this doctor was unable to provide me with a confirming diagnosis, I believe that the interactions with my husband helped to motivate him more and to take a greater interest in trying to help me with finding a diagnosis.

Now that I have a confirmed diagnosis and a core group of medical doctors that I completely trust and feel comfortable with, my husband no longer has to go with me for my visits. He seemed hesitant to release his role as advocate at first, but he now understands that his role as advocate is no longer necessary at this time. He now plays the role of advocate, but only behind the scenes. Whenever I have an appointment, we usually talk about and make a list of issues that I need to discuss with the doctor. Thus far, this change has proven to be beneficial. I have enough confidence to deal with my doctors alone, and he no longer has to miss time from work to attend every appointment. Of course, he is always ready to reactivate his role as advocate if any future issues arise that require this action.

He still continues to be my main source of comfort, support and encouragement when I am having a bad day. In many ways, he is not just my life partner, but he is my partner in Parkinson’s Disease. His only sadness is that he cannot “fix” for me what is broken. Just knowing he walks beside me during this journey, is more than I could ever ask for. Yes, a cure would be wonderful. Since that is not yet an option, I have the second best option. I have someone in my life who loves me enough to take on my disease with the same intensity that he would if he were the one who had it. I am very lucky to have that in my life, and I thank the Lord daily for providing me with my partner.


Mary said...

I agee - having an advocate is cruicial. God Bless your husband for being so supportive!

Diane J Standiford said...

How wonderful you two found each other! I prefer to go to doctors alone; in the last 24 months however, a MS specialist LIED about what she had said to me and from here on out I will take someone with me. I was shocked by the Drs. unprofessionalism. If I go alone, I will take a tape recorder. SAY! Your blog is highlighted on mine today. Your posts are powerful.

Patient With A Plan said...

He has been my strength. As you well know, the caregiver's role is so important to the person with PD. I am often amazed at his ability to deal with the daily ups and downs that this disease causes. It is the caregivers who play the most crucial role in the overall health of the person with PD, in my opinion. Hugs to you and your family.

Patient With A Plan said...

It always amazes me how many doctors will lie, then become defensive when confronted with the truth. In my opinion, I would rather have a doc tell me that he or she does not feel capable of handling my case as a patient, rather than dance in circles in order to maintain their pride, arrogance, etc. Yes, I am very lucky that my husband and I found eachother. Thanks so much for all of your support.