Easter morning, on the way home from church -
Keith: So what all do you have to do to get ready for Easter dinner?
Me: Well, that's kind of a loaded question. What exactly is it that you want to know?
Keith: I just asked what you have to do to get ready for Easter dinner. Why are you acting like I have ulterior motives or something?
Me: Keith, there's a lot in a question like that. Are you asking what I need to do to get the kids ready for Easter dinner? Are you asking me what I need to do to get the house ready for Easter dinner? Are you asking me about the food itself? What specifically are you trying to ask me? Because I could go on for two hours about what all I have to do to get ready for Easter dinner.
Keith: Look, all I wanted to know was if you needed any help when we get home before I leave to go see my dad.
Me: Well, okay. No I don't need any help. But do you see what I mean? Asking if I need any help before you leave is a lot different than asking what I have to do to get ready for Easter dinner.
Keith: Sigh
Lately, this seems to be the way our conversations go most of the time. Keith and I have gone from a couple with excellent communication skills to a couple struggling just to understand one another. I'm not sure if it's the disease itself or the medication, or maybe a combination of the two. Difficulty in communicating effectively is a problem faced by many PWP, and sadly, it is one of many reasons why PWP are often viewed as being stupid, or as one rude person said, "bumbling idiots." This article from e-ParkinsonsPost, is an excellent source for why communication proves so difficult.
In Keith, I see a little bit of everything, with Language Structure topping the list. Often, he only speaks half a sentence but expects me to know what he is saying. He readily admits that many times he barely expresses a thought, with the expectation that we will automatically know what he means. Another problem topping the list is Emotional Processing. This is a biggie and almost tied for the number one spot, mainly because it's such a huge issue for me. A few years ago, when Rielly-Anne was just beginning to talk good and understand a lot of what was going on around her, and when Keith's facial masking became a little worse, we had a talk addressing how to deal with that around the kids. We decided that the best thing to do was for Keith to over-exaggerate his voice and facial expressions so that there would never be any doubt in the children's minds how their daddy felt. Somehow that didn't translate to mom needs it too. Maybe it's because I know the disease and what it does to him; I know all about facial masking, hypophonia and dysarthria, and as an adult I am able to understand that if Keith doesn't smile at me, it's not because he doesn't love me, only that right now, he physically can't. Well, that's what you'd think, anyway.
Nearly everyday when Keith comes home from work I ask him the same thing - How are you? And every time I ask he says one of three things - beat, tired or wore out. Lately, my reply to that has been , I know that. Other than that, how are you feeling? Simply put, mama needs to see the love too. Keith rarely over-exaggerates his voice or facial expressions for me. His blank, frozen, facial-masked face is pretty much identical to his pissed off face. The last thing you want your husband doing as soon as he walks in the door is giving you a pissed off look. Technically, I know why he's doing it. Emotionally, I just want to see his face light up sometimes. Keith has difficulty emotionally expressing himself, and I have difficulty reading his emotions. When you add all that to the problem of having difficulty with something as simple as putting together a sentence, it makes for some pretty tough situations.
Then there are those times when Keith does add emotion or facial expressions to what he says, but that can cause a whole separate issue of misunderstanding. Sure, he can force a smile or feeling into his eyes when he speaks, and he can put emphasis on his words and take the time to put those words together, but that still doesn't guarantee that all those components will come together, forming a perfectly understandable and correct train of thought. For example, just yesterday I got out of bed earlier than usual to sneak off to the Y for a quick workout. Keith was already up when I came downstairs -
Keith: Wow! You got away from the baby and out of bed without waking her up!
Me: Yes. I've done that lots of time. (I was thinking he had forgotten due to memory issues, yet another blog post!)
Keith: I know you've done that lots of times! I didn't say that because I was surprised, I said it because I thought it was good!
Me: Oh. Sorry! You said it like it was the first time I was able to get out of bed without waking her.
Keith: Well, that's not what I meant!
So you see, even if the words and facial expressions are there, it doesn't necessarily mean that they will be interpreted correctly. He spoke the right words, but his inflections, emphasis on certain words, and facial expressions led me to believe that he thought this was a first-time thing. Unfortunately, almost every thing Keith says anymore I must take a moment or two to really try and understand exactly what it is he is saying, or trying to say. I have to admit, sometimes when I am busy or preoccupied with the children I don't take that time like I should, and that usually results in a huge miscommunication, and often some one's hurt feelings.
Yes, we are lost in translation, but all is not lost. Thankfully, we have done a lot of research, we have a great specialist, and some great family and friends who understand. So next time if you happen to be at the bank, or at work, or at the grocery store, and someone is speaking to you in an unintelligible manner, don't automatically assume he's an idiot - he just might be my husband, lost somewhere in translation.
Thursday, May 5, 2011
Saturday, April 30, 2011
Interview with Meg, of Data Driven Health Care Solutions
Q: What is your name, age, and occupation?
Meg: My name is Meg Duggan. I am 50 years old and I live in Kansas City, Missouri. Until this fall, I was the Executive Director of the Parkinson Foundation of the Heartland. I am now a Managing Partner of Data Driven Health Care Solutions.
Q: Can you tell us what led up to the founding of Data Driven Health Care Solutions?
Meg: My sister Cindy was diagnosed with Parkinson’s disease about 16 years ago, when she was in her late 30s. My father had a much older sister who had Parkinson’s, but our family, like so many, viewed PD as an illness defined by old age and not as an immediate threat. My father also has a neurological disorder, which until my sister’s diagnosis was the elephant in the room. (Interestingly, years earlier when Cindy and I were both in our 20’s, she called me one day and said “don’t you worry you have what dad has when you miss a step or do something oddly clumsy?” In hindsight, I believe she was experiencing PD symptoms 10 years before she realized that something was truly amiss.)
Cindy first began seeking a diagnosis when her right pinky finger began to tremor. She went to a variety of physicians and was diagnosed with tennis elbow, a bad rotator cuff, and “being too type A.” Finally she saw a doctor who remarked that her symptoms looked like PD – but could not possibly be since she was so young.
At that point, she began searching for PD on the internet, and learned that Kansas City was the home to an excellent movement disorder specialist. She still remembers the mixed feelings she had when she was greeted with “Welcome, you have Parkinson’s Disease.” A bit of relief that her condition had a name and sheer terror at what was ahead.
Cindy’s diagnosis led to much family searching. She had 2 very young children, and was quite concerned about heredity and heritability – particularly when viewed through the lens of my father and his sister. My father’s issues were traced to a parasite picked up in Japan. My aunt’s PD was a more typical late-age diagnosis, so we were able to put some of the fears of heredity on the back burner.
Our entire family geared up to join the fight for the cure. Cindy called the local Parkinson Association, and we all became members. At the time, the association was entirely a volunteer organization, mostly made up of PwP and their care partners. After being referred to a late-stage support group, a truly horrible experience for a young, newly diagnosed patient, Cindy started a young onset group and eventually joined the board of the Parkinson Association of Greater Kansas City. After several years, with her help, the group had raised enough money to hire their first employee. I interviewed “blind” and was hired.
Four years ago, I adopted a 12 year old child who had had an utterly horrific life. (Truly the stuff of scary movies. ) He started high school this year, and I was very concerned about not being home after school. Life in the non-profit world is great, but it requires many many nights and weekends – and a huge amount of mental energy. I decided to take her PD Log and see if I couldn’t form a business, and Data Driven Health Care Solutions was born.
Q: What was your experience like as Executive Director of the Parkinson's Foundation of the Heartland?
Meg: I spent 14 years as the Executive Director, building the organization from an all-volunteer group with a budget of $80,000 to a group with 6 full time employees and a budget of over $800,000. We eventually renamed ourselves the Parkinson Foundation of the Heartland and expanded our territory from Kansas City to the surrounding 3 states. These were truly wonderful years for me. I loved the non-profit world. We added amazing programs and events and expanded our membership and our reach.
It was, however, difficult. First, I knew too much about this insidious disease not to be deeply concerned for my sister and her cohorts all of the time. PD truly came to define my life as well as my loved ones lives. I had a dinner party one night and a guest brought buttons that said “No PD.” Everyone pledged $100 if I could make it through dinner without mentioning the “p-word.” I did it – but only for the $1000 raised for the cause!!
More difficult however, was the knowledge that I was having a wonderful, engrossing and deeply meaningful professional life – at the cost of my sister’s health. I had a difficult time shedding those feelings until a young woman told me how very much she wished that her family would engage in her fight. She thought my sister was lucky to have an involved family. I took that feeling to heart and went back to work.
I was also able (as I still am) to serve as an information clearing house for my sister, her children and my parents. I closely monitor medical breakthroughs, new medicines and diagnostic tools, clinical trials and the like. My sister has been known to call me to ask” What’s that pink pill I take called?” I think that my deep dive into PD allowed her to hold it at arm’s length. For a while at least.
Last fall, she began having a lot of trouble with the on/off cycle. I called on my contacts and together, we wrote the PD log. She found it very helpful, her medical team thought it was great, and she got some helpful interventions from its use.
Q: How is your sister's health now?
Meg: My sister, at 54, remains healthy and vital. Several years ago she took 200 high school students to Ireland – a feat I wouldn’t try at my healthiest! She works about ¾ time running a non-profit that helps other non-profits connect with local business leaders for support and education. She is also a minister’s wife – which is a full time job in itself. She volunteers for many organizations, and is closely involved in the lives of her children – one of whom is out of college and working in Chicago, the other finishing up school at Drake University.
Q: What are your future goals for Data Driven Health?
Meg: In the coming years, I hope to monetize the site, probably through the sale of advertising. One thing I won’t do is charge Parkinson patients to use the site – EVER! I know far too well the constant financial drain imposed by this disease.
I am currently working on a log for people who have had DBS to help them get the most concise programming possible. Next up is a log for people suffering from RLS. I hope to cover the gamut of neurological diseases in the future. This is an exciting time for me. I hope that the things I am doing will help empower people to take charge of their health conditions and receive improved care and support.
Meg, thank you so much for the interview! Keith and I are currently working on entering our info into the system, and I will post again after using it for a month or so.
Meg: My name is Meg Duggan. I am 50 years old and I live in Kansas City, Missouri. Until this fall, I was the Executive Director of the Parkinson Foundation of the Heartland. I am now a Managing Partner of Data Driven Health Care Solutions.
Q: Can you tell us what led up to the founding of Data Driven Health Care Solutions?
Meg: My sister Cindy was diagnosed with Parkinson’s disease about 16 years ago, when she was in her late 30s. My father had a much older sister who had Parkinson’s, but our family, like so many, viewed PD as an illness defined by old age and not as an immediate threat. My father also has a neurological disorder, which until my sister’s diagnosis was the elephant in the room. (Interestingly, years earlier when Cindy and I were both in our 20’s, she called me one day and said “don’t you worry you have what dad has when you miss a step or do something oddly clumsy?” In hindsight, I believe she was experiencing PD symptoms 10 years before she realized that something was truly amiss.)
Cindy first began seeking a diagnosis when her right pinky finger began to tremor. She went to a variety of physicians and was diagnosed with tennis elbow, a bad rotator cuff, and “being too type A.” Finally she saw a doctor who remarked that her symptoms looked like PD – but could not possibly be since she was so young.
At that point, she began searching for PD on the internet, and learned that Kansas City was the home to an excellent movement disorder specialist. She still remembers the mixed feelings she had when she was greeted with “Welcome, you have Parkinson’s Disease.” A bit of relief that her condition had a name and sheer terror at what was ahead.
Cindy’s diagnosis led to much family searching. She had 2 very young children, and was quite concerned about heredity and heritability – particularly when viewed through the lens of my father and his sister. My father’s issues were traced to a parasite picked up in Japan. My aunt’s PD was a more typical late-age diagnosis, so we were able to put some of the fears of heredity on the back burner.
Our entire family geared up to join the fight for the cure. Cindy called the local Parkinson Association, and we all became members. At the time, the association was entirely a volunteer organization, mostly made up of PwP and their care partners. After being referred to a late-stage support group, a truly horrible experience for a young, newly diagnosed patient, Cindy started a young onset group and eventually joined the board of the Parkinson Association of Greater Kansas City. After several years, with her help, the group had raised enough money to hire their first employee. I interviewed “blind” and was hired.
Four years ago, I adopted a 12 year old child who had had an utterly horrific life. (Truly the stuff of scary movies. ) He started high school this year, and I was very concerned about not being home after school. Life in the non-profit world is great, but it requires many many nights and weekends – and a huge amount of mental energy. I decided to take her PD Log and see if I couldn’t form a business, and Data Driven Health Care Solutions was born.
Q: What was your experience like as Executive Director of the Parkinson's Foundation of the Heartland?
Meg: I spent 14 years as the Executive Director, building the organization from an all-volunteer group with a budget of $80,000 to a group with 6 full time employees and a budget of over $800,000. We eventually renamed ourselves the Parkinson Foundation of the Heartland and expanded our territory from Kansas City to the surrounding 3 states. These were truly wonderful years for me. I loved the non-profit world. We added amazing programs and events and expanded our membership and our reach.
It was, however, difficult. First, I knew too much about this insidious disease not to be deeply concerned for my sister and her cohorts all of the time. PD truly came to define my life as well as my loved ones lives. I had a dinner party one night and a guest brought buttons that said “No PD.” Everyone pledged $100 if I could make it through dinner without mentioning the “p-word.” I did it – but only for the $1000 raised for the cause!!
More difficult however, was the knowledge that I was having a wonderful, engrossing and deeply meaningful professional life – at the cost of my sister’s health. I had a difficult time shedding those feelings until a young woman told me how very much she wished that her family would engage in her fight. She thought my sister was lucky to have an involved family. I took that feeling to heart and went back to work.
I was also able (as I still am) to serve as an information clearing house for my sister, her children and my parents. I closely monitor medical breakthroughs, new medicines and diagnostic tools, clinical trials and the like. My sister has been known to call me to ask” What’s that pink pill I take called?” I think that my deep dive into PD allowed her to hold it at arm’s length. For a while at least.
Last fall, she began having a lot of trouble with the on/off cycle. I called on my contacts and together, we wrote the PD log. She found it very helpful, her medical team thought it was great, and she got some helpful interventions from its use.
Q: How is your sister's health now?
Meg: My sister, at 54, remains healthy and vital. Several years ago she took 200 high school students to Ireland – a feat I wouldn’t try at my healthiest! She works about ¾ time running a non-profit that helps other non-profits connect with local business leaders for support and education. She is also a minister’s wife – which is a full time job in itself. She volunteers for many organizations, and is closely involved in the lives of her children – one of whom is out of college and working in Chicago, the other finishing up school at Drake University.
Q: What are your future goals for Data Driven Health?
Meg: In the coming years, I hope to monetize the site, probably through the sale of advertising. One thing I won’t do is charge Parkinson patients to use the site – EVER! I know far too well the constant financial drain imposed by this disease.
I am currently working on a log for people who have had DBS to help them get the most concise programming possible. Next up is a log for people suffering from RLS. I hope to cover the gamut of neurological diseases in the future. This is an exciting time for me. I hope that the things I am doing will help empower people to take charge of their health conditions and receive improved care and support.
Meg, thank you so much for the interview! Keith and I are currently working on entering our info into the system, and I will post again after using it for a month or so.
Wednesday, April 27, 2011
What Am I Worth?
For years the question from Keith has always been How will I provide for my family if something happens to me? We have gone to great lengths to ensure that our family will be taken care of should the worst happen. We have prioritized, and the life we now live reflects what matters most to us. We purchase used vehicles, don't use credit cards, paid off our debts, and bought a lot of life insurance. For Keith. You see, to Keith the worst that could happen would be if he left me in a home I couldn't afford without any money to pay the bills, buy groceries, raise the kids. For me, the worst that could happen is if I left him with all the kids, plus PD.
Keith is wonderful with the kids, but let's face it - he just can't do all the stuff that I do. There is a huge gap in the energy levels alone. Raising three kids, homeschooling, keeping up the house, running all the errands and doing all the chores, working a full time job, plus dealing with a degenerative neurological disorder might be a bit much for the man to handle alone. Therefore, a hefty amount of life insurance is in order should anything horrible happen to me. But how much? What am I worth?
Keith is wonderful with the kids, but let's face it - he just can't do all the stuff that I do. There is a huge gap in the energy levels alone. Raising three kids, homeschooling, keeping up the house, running all the errands and doing all the chores, working a full time job, plus dealing with a degenerative neurological disorder might be a bit much for the man to handle alone. Therefore, a hefty amount of life insurance is in order should anything horrible happen to me. But how much? What am I worth?
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