Monday, February 28, 2011

Shaky's Kids Parkinson's Interviews

Life With Shaky's interview series will include Q & A sessions with Shaky's Kids, to be posted each Wednesday.  Our own childern will be interviewed, and they have a lot to say!

All other interviews will continue to be posted each Saturday. 

Sunday, February 27, 2011

Saturday, February 26, 2011

PD Interview with Ben and Michelle, Part I

I have had the privilege to interview a couple friends of ours, Ben and Michelle.  Ben is a PWP and Michelle is his loving partner.  We conducted this interview via email, and nothing has been edited or left out.

Q:  Please state your name and occupation.
Ben:  I am 55 and have worked for 17 years for a city of 20,000, currently I am a Mapping and GIS Specialist.
Michelle:  I am 42 and the Stormwater Program Manager for a local municipality.

Q:  What is your marital status?
Ben:  I divorced over 2 years ago after more than 20 years of a bad marriage, I am engaged to a wonderful woman.
Michelle:  We call it "Engaged" (we have been living together for a little over three years).

Q:  Do you have any children?
Ben:  Our children are 17, 19 and 24.  The youngest, the boy, is a home and the girls are at college and married.
Michelle:  We are a conjoined family, currently raising my children from a previous marriage.  We have one child living in the home (17), and one in college (19).  We also have an older daughter from Ben's first marriage, who is 24 and married to a really nice guy.  We're inching closer to empty nesting, and looking forward to it!  Aaah, peace and quiet!

Q:  Ben, what age were you at the time of your diagnosis?
Ben:  I was 42.  "Young Onset"

Q:  What symptoms did you have that led you to seek medical treatment?
Ben:  Lack of strength and stamina and "cog-wheeling".  I was so tired all the time, something had to be wrong.

Q:  By "cog-wheeling," you mean the pullback, jerky movements of your limbs, correct?  What part of your body was "cog-wheeling?"  For how long did you suffer these symptoms before going to the doctor?
Ben:  The main symptom was extreme tiredness and a lack of stamina.  When I would get tired, then I would start cogwheeling.  My arms would cogwheel - instead of a smooth motion, even just to pick my hands up and put them in my pockets, any motion of my arms was a jerk-jerk-jerk rather than the normal smooth motion.  I probably had the symptoms for about six months before I saw a doctor.  I felt that something was wrong, but wasn't able to define exactly what was wrong.

Here's a clearer picture of the situation:  I was helping to build a house and a shop, and being outworked by my brother who had a heart condition and two retired schoolteachers.  I was forty  years old at that time.  And I was the one who had to stop and take a rest.  That was the beginning.

Q:  So many PWP go years before getting a correct diagnosis, having to deal with several incorrect diagnoses, multiple rounds of unnecessary testing, incompetent physicians.  How easy or difficult was it for you to get an accurate diagnosis?
Ben:  It took several years.  The thought at first was that it was related to diabetes, or something similar.  I had tests for just about everything that my PCP could think of .  We followed a lot of blind alleys until I was able to get in to see him while I was having one of the intermittent episodes of tremor and cog-wheeling.  He did a few simple balance tests then set me up with an appointment with the neuro.  The neuro took about 10 minutes to come up with PD.  He said "good news is that it isn't ALS, bad news is that it's PD"

Q:  What type of physician are you seeing - a general practitioner, a general neurologist, or a neurologist who specializes in Parkinson's disease?
Ben:  I recently started seeing a movement specialist at the Booth Gardner Parkinson's Center in the Seattle area.  The last trip to my former neuro was so upsetting that we both walked out of the office before he was really done.  He was attitude rude and he told us about his problems, wouldn't listen to my questions or new symptoms.  He had basically let me treat myself for the past 12 years, adjusting my medications myself and doing research on new drugs and trials that were in the area.  He thought that there were enough PD drugs and that trials were a waste of time.

Q:  Do you trust your current physician and feel he/she is competent and understands you as a person and not just as a patient?
Ben:  I have met my current Dr. once, but have a good feeling for her ability.  She is very highly regarded in the medical community and the BGPC is the top movement clinic in the northwest.
Michelle:  As Ben said, we have recently changed from his first neurologist, whom he'd been seeing for 13 years or so, to a movement disorder specialist at the top Parkinson's Clinic in the Northwest.  We decided to make the change after many occasions where we felt we were profoundly disappointed by his original neuro, both in his knowledge and his professionalism.  We wanted a place that was up on current treatments and knowledge, and would treat us like a person, rather than a waste of their time.  The first appointment with the MDS seemed to be very fruitful, and we have hope that this will continue. 

Q:  It seems as though, because PD is so individual and there is no set treatment for all patients, many neurologists take this stand - let the patient experiment on their own with the meds.  Ben, do you think if your neurologist had been more involved in your treatment plan and had a better view of PD trials and research that you would have felt more empowered, somehow, to be able to adjust your own medication?
Ben:  It's difficult to get into a situation where the patient is the practitioner.  While it works for fine tuning dosages, it can't work for drug suggestion or to get included in a trial.  If the only input that you get from the physician is a script for your suggestion, then the physician really isn't fulfilling his duty, and it becomes more of a burden on the patient to spend the time necessary to investigate drugs and dosing regimens instead of dealing with the day to day problems and challenges of living with the disease.

When you only see a doctor for ten minutes every six months, everything you say becomes anecdotal.  You could be in there telling him that you were taking five capsules of CoQ10 and had thrown away all your Sinemet and wouldn't know if you were telling him the truth or lying.  The only thing that the doctor knows is what you tell him.  When you come in there saying "You know, I'm feeling like crap, is there anything you can do?" or "I'm having trouble wit the side effects getting pretty overwhelming" and they tell you "You're just going to have to get used to it because there isn't anything else", and you then find out that there were other alternatives all along that you weren't told about, you realize that you're in it by yourself.  You realize that the only reason  you're seeing the doctor is for someone to write a script.  There is no input from the doctor. 

Q:  Ben, how did you tell Michelle that you had PD?
Ben:  I made sure that she was aware of my condition before we got involved.  We work together and I am very open with my co-workers about my condition.  I don't see any reason to try to hide something that could be mistaken for other problems.  When most people see trembling hands and hear slurred speech, they think alcohol not PD and I haven't wanted to have people at work thinking that I was having a little nip during the day. 

Q:  Michelle, how did you handle learning of Ben's diagnosis?
Michelle:  I always knew, because we worked together.  He had been diagnoses and broken the news to the workplace, so it was something I found out when I met him.

How did I handle it after we'd fallen in love?  I cried.  A lot.  And then I started learning about it as much as I could.  He originally tried to talk me out of getting involved with him because of it, but by that time I knew more about it and knew that it wasn't a death sentence, and that there were a lot of people still living long and good lives with the medications and treatments available. 

Please come back next Saturday for Part II of my interview with Ben and Michelle!  Hear what Michelle has to say about falling in love with a man who has PD!  One week from today! 

Friday, February 25, 2011

Exciting New Website for PWP

Data Driven Health is an interactive online journal that keeps track of medication, dosages, and on/off times for PWP.  The site was set up by Meg and her older sister, who is a Young Onset PWP.  I was asked by Meg to check it out and report my opinion, and I have been happy to oblige.

When I first heard about Data Driven Health, I expected some sort of chart or graphing device, a space for journal entries, maybe an FAQ about Parkinson's Disease.  Boy was I wrong!  I am happy to say that I have been blown away by what Meg and her sister have put together with Data Driven Health!

Although Keith and I haven't actually used it yet (we can't wait to get started!), we like what we see. The site is free and anonymous, and its jazzy, professional design is pleasing to the eye, which definitely gets two thumbs up from me.  It's high-tech yet user friendly and geared to benefit PWP and their caregivers.  According to the description on their website -

Patients have freedom with accuracy

With our innovative new system, patients simply log into their account, and easily enter their medications with dosage times, dyskinesia, ON/OFF times, moods, and journals. Everything is automated. This means no more missed entries, inaccurate times, or worrying about bad data. Finally, an error-proof and reliable way to collect critical information from patients, in real time.

But what impressed me most about Data Driven Health was that physicians can have direct access to their patient's information.  The possibilities are limitless!  Imagine if you could simply leave a message with your doctor to check your data, and when he/she does, there it is, all your on/off times, dyskinesia, dosages, and much more!  PWP may have the option of never again having to write everything down or try to remember it all each time they visit their neurologist.  And, the neurologist may have a far better view of what is actually going on in the body of their patient.  That alone makes Data Driven Health an invaluable resource for all PWP.   Data Driven Health states -

Doctors get immediate and accurate results

The patient's primary doctor can access any information entered by their patient. Not only can this information be accessed, but easy-to-read charts are automatically generated and accessible 24 hours a day, 7 days a week. Zoom in, change dates, print reports all from any place with an internet connection. Enormous amounts of time saved means more efficiency and better patient care.

Keith and I can't wait to put all our information in and get started! Once we've used Data Driven Health for a month or so, I will give another review.  I encourage you all to check it out!