Friday, May 27, 2011

As Posted on the National Parkinson's Foundation

From the National Parkinson's Foundation -

Care Partner Needs: Survey ResultsA survey of care partners to people with Parkinson’s disease (PD) illustrates the challenges that this population faces and the need for comprehensive programs and services to address their needs.

As the population of the United States ages, the incidence of Parkinson’s is expected to increase. This will affect the number of people needed to care for people living with PD. The needs of PD care partners are poorly understood and often overlooked.

So, in 2006, the Parkinson’s Disease Foundation (PDF) undertook a survey of care partners to people with Parkinson’s to better understand and address the needs of this growing population. PDF developed a 53-question survey which was available through several online locations, including the PDF website,, during the spring of 2006.

1,0001 care partners - 81 percent female and 19 percent male – responded and the results shed lights on the needs of care partners to people with Parkinson’s.


Of the 1,001 care partners who responded:

76 percent were between the ages of 45 and 74.

63 percent were caring for their spouses.

27 percent were caring for a parent.

69 percent have provided care for one to six years.

Care partners reported on their responsibilities:

45 percent provide care for more than five hours a day.

78 percent spend time interacting with health care professionals.

90 percent help to manage difficult PD symptoms.

Care partners told us about the demands that impact their lives:

65 percent are concerned about finances.

71 percent say they cannot take time for themselves.

55 percent say they need help giving care at times.

Caring for someone with PD can range from "quite manageable" to "exceedingly difficult," with responses demonstrating that:

15 percent of care partners are operating in a very low stress environment.

55 percent of care partners operating in a fairly high to very stressful environment.

The level of stress for care partners was a function of a number of indicators including:

things that the care partner does (e.g., provides care at least five hours a day; interacts with healthcare professionals and manages difficult symptoms);

things about the person receiving care (e.g., he or she is at least 75 years old; care partner is not satisfied with communication with the person receiving care;

the care partner feels that the person receiving care is not doing all that he or she could do to manage her or his disease); and

impact on the care partner (e.g., care partner do not take time for themselves; there are times when care partners need help; care partners are concerned about finances).

Although some of the indicators are likely to carry more weight than others, as the number of indicators increased, we inferred that the environment was more difficult, demanding and stressful for the care partner.

What Does it Mean?

This study provides new evidence of the challenges that Parkinson's care partners face as they struggle to meet the needs of their loved ones and to balance the competing demands of giving care, working and meeting other family responsibilities. The data suggest the need for a more comprehensive approach to programs designed to support and sustain care partners of people with Parkinson's. One possible limitation of this study is that the data only reflects the responses of care partners with Internet access and these results might not be representative of the larger PD care partner community.

Saturday, May 7, 2011

Parkinson's Interview with Anonymous

Q:  What is your age and sex?

PWP:  54 Male

Q:  What was your age at the time of diagnosis?
PWP:  50

Q:  Why types of physician are you seeing – a family practitioner, a general neurologist, or a neurologist specializing in Parkinson’s disease?
PWP:  Neurologist specializing in movement disorders

Q:  Explain in detail how you were diagnosed.
PWP:  I saw a local Neurologist who ordered an MRI and referred me to the specialist. I didn’t have any issues , but then again, PD runs in my family.

Q:  Are you married or in a relationship?
PWP:  Married

Q:   Do you have children?
PWP:  No

Q:  Please detail you medication schedule. If you can, list all the medications and the doses from your diagnosis through to your current medication schedule, along with any negative side effects you may have experienced.
PWP:  After my initial diagnosis I was only on mirapex, a dopamine agonist, don’t remember the dosage. After the first year Levodopa was added. I took one 25/100 four times a day along with the mirapex.

About my third year the Levodopa was increased to two pills three times a day and one pill at bedtime.

Also, we switched my mirapex to requip in my third year because I had some side effects from mirapex.

In my fourth year and now, I take two Levodopa four times a day, and during the day I take one requip with my dopamine, but at night I take two requip to help me sleep. My body is now very clearly in “On/Off” modes and I can tell it needs more dopamine.

Q: Were you alone or with you wife when you received your diagnosis?
PWP:  With my wife.

Q:  How did getting that diagnosis make you feel? Was it a shock to you or something you expected?
PWP:  Even though we expected it, it was still like a slap across the face.

Q:  If you expected it, why was it like a slap across the face?
PWP:  Good question. Even thought it was expected, when the neurologist tells you that you have an incurable disease, there is a “facing your immortality “ moment. Even though PD is slow moving

Q:  What was your wife’s reaction to your diagnosis?
PWP:  She expected it as well . She was very supportive.

Q:  How did you tell the rest of your family and friends?
PWP:  Since it runs in the family, no one was surprised. However, even though it was expected, the disease can be so different in each person, to this day I don’t think my family or friends understand the effects PD has on me.

Q:  How did the rest of your family and friends respond?
PWP:  They understood but no one really seems to want to know any details.

Q:  You have specifically asked to speak about the effects Parkinson’s has on sexuality and intimacy. Why is this such an important topic for you?
PWP:  This is such a sensitive and private area that I don’t feel is openly addressed any place I have seen and it can have serious benefits as well as serious consequences.

Q:   What are some of the problems with intimacy you have faced as a result of Parkinson’s?
PWP:  65% of men with PD have erectile dysfunction. We all know there are pills to help this and they do work. However, they can have side effects and your partner may not understand all the challenges you face both physical and mental.

I can only speak for myself but here is a list of issues I feel need to see the light of day:


Most of the worst side effects never manifest. But we all know PD leaves the patient with less energy and something this simple can have a big impact on a PWP. ED meds often leave one feeling like they have the flu the following day. A small price to pay for an otherwise healthy person. However, when coupled with PD, the next day can almost be completely lost due to fatigue. This forces one to both plan more for intimacy (weekends when you may not have a lot of activity planned) and at times you may have to choose between maintaining that physical connection with your partner and your own comfort or health. Partners will need to be empathetic and understanding.


PD can cause depression, confidence issues, etc. When you add ED , you often add to the confidence issues and the PD patient may feel even more inadequate or isolated. For a young onset PWP who is still sexually active this area can be like a minefield and without a very understanding partner could have devastating results.

Q:   Do these issues affect your marriage? If so, please explain how.
PWP:  They have not yet but only by the grace of God and a very understanding wife. At this point I think it is more a problem to me.

Q:   Does having Parkinson’s make you feel less adequate in the bedroom? If so, why?
PWP:  Yes. Even without ED issues there are still other issues like energy level, apathy, depression, embarrassment over tremors or loss of shall we say being able to move around with ease.

Q:   Are you on any medication for sexual dysfunction caused by Parkinson’s disease?
PWP:  Yes, Levitra.

Q:   Levitra can often have uncomfortable side effects. What side effects, if any, have you experienced?
PWP:  Mostly fatigue and muscle aches the following day to the point of not being able to function well until about noon.

Q:  Do you feel that it is worth taking these medications when they cause such horrible side effects?
PWP:  Yes because I think it is important to maintain a physical connection with your partner as long as possible. All to soon, the partner will have to face losing the person they married in so many ways. A PWP changes, almost morphs into something completely different over a period of time and I hear spouse/caregivers say they miss their partner even though we are still here, living, we are greatly changed by the disease.

Q:  Do you ever fear a time when you can no longer be intimate, due to Parkinson’s?
PWP:  I don’t fear it. I know it’s coming. But it will be sad. We will find other ways to maintain intimacy.

Q:  How does this possibility make your wife feel?
PWP:  I don’t know for sure. I believe she knows and accepts that inevitability.

Q:   What are the top three obstacles you have had to overcome in regards to Parkinson’s disease and sexual intimacy?
PWP:  ED, Energy level, Confidence

Q:  Do you feel as though you have overcome these hurdles or is it still a work in progress? Explain.
PWP:  Mostly , except for energy level which will always be a struggle.

Q:   Do you discuss these problems with your doctor? Why or why not?
PWP:  We have. It’s important for your doctor to get the whole picture because of the likelihood of depression and other aspects of PD.

Q:   Why do you feel there is not much information regarding such an important subject?
PWP:  People are likely unwilling to share intimate details.

Q:   What advice do you have for others who may be experiencing sexual intimacy problems as a result of Parkinson’s?
PWP:  Be open and honest with your partner and understand that intimacy can take many forms. Resist feeling inadequate and learn new ways to express your love and support. In short, NEVER give in. Adapt and overcome.

Thank you, Anonymous, for such a personal interview! 
For more information on PD and sexual intimacy, please click the following links:

Keeping the romance alive!

Sex and PD: Making Relationships Work

Sexual Function in Parkinson's Disease

Parkinson's Disease and Your Sex Drive

Friday, May 6, 2011

My Life as the Hummingbird

Some months ago, while updating the blog, I changed the background to a pink silhouette of hummingbirds.  At the time, I didn't really know why I chose that as the new backdrop to the blog, other than the fond memories I had of watching the tiny birds hover above my grandfather's azaleas as a child.  More recently, I have developed a strong bond, or connection, to the hummingbird.  It's symbolism and mythology are especially meaningful to someone well into their journey with PD.

Hummingbirds are only found in the Western Hemisphere, so they are not a part of traditional fairy tales, myths and legends of European and African descent.  However, Native American mythology is rich with stories of the hummingbird.  Due to their ability to go into torpor, a hibernation-like state, and quickly waken again, Native American legends often tell of this tiny bird renewing life, or bearing with them light like the sun.  One belief is that hummingbirds act as messengers between words, helping shamans keep the balance between spirit and nature.  There is a Pima legend that tells of the hummingbird who, like Noah's dove, brings back a flower as proof that the great flood is subsiding; life renews itself in a brighter day, in a better world. 

Symbolically, the hummingbird represents regeneration and resurrection.  She is the creature that opens the heart and allows it to heal.  The hummingbird is the only creature that can stop instantly while travelling at full speed.  She can hover, fly up, down, left and right.  She can also fly backwards, as if glimpsing into the past.  The way a hummingbird eats is also amazing - with her long, thin beak and tongue, she passes through the tough and often bitter outer layers of flowers to reach the sweet, juicy nectar within. 

Hummingbirds teach us that no matter how busy we are, no matter how fast we are going, we must always make time to stop and search for the sweetness of life.  We must look past the bitterness and the tough times, and instead focus on the light-hearted joy that comes our way.  Like the bird that hovers over the beautiful flowers in the garden, don't we all want to hover over the beautiful moments in our lives?  Don't we all wish we could fly backwards into our past, savoring each delicate, magical moment of it?  Hummingbirds flap their wings in a slight figure 8 motion, the symbol of infinity.  Infinite life, infinite love, infinite beauty, infinite joy, infinite patience, infinite wisdom.

The further into the world of PD that Keith and I go, the more the hummingbird speaks to me.  This tiny bird teaches me so many invaluable lessons.  Like the bird that seem to die each night and resurrect and renew her life each glorious morning, I too, renew myself each day, in faith, in prayer, in love, in commitment to my husband.  Like the bird that stops mid flight to hover over the beautiful flower, drinking in that which sustains it, I too, have learned to stop in my busiest moments and hover near the beauty of my own life, drinking in the sweet sights and sounds of my family.  Like the bird that moves her wings in a motion of infinity, I have found infinite joy and love, and that I must pray each day for the infinite wisdom and patience I know I will fall short of. 

If PD is a flower, then I am the hummingbird, constantly hovering over it, reaching deep, past all that is bitter and rough, to the sweet nectar that nourishes life, that which sustains me.  With infinite love I move my wings; I move myself  up, down, left, right, in any way that is required of me to reach that nectar.  And sometimes I even fly backwards, looking to the flowers of yesterday, savoring only how pleasant each flower was.  How wonderful to be a tiny little hummingbird amid the dark, scary thorns of PD. 

Summer Story by Mary Oliver

When the hummingbird
sinks its face
into the trumpet vine,
into the funnels

of the blossoms
and the tongue
leaps out
and throbs,

 I am scorched
to realize once again
how many small, available things
are in this world

that aren’t
pieces of gold
or power-------
that nobody owns

or could but even
for a hillside of money-----
that just float
in the world,

or drift over the fields,
or into the gardens,
and into the tents of the vines,
and now here I am

spending my time,
as the saying goes,
watching until the watching turns into feeling,
so that I feel I am myself

a small bird with a terrible hunger,
with a thin beak probing and dipping
and a heart that races so fast

it is only a heart beat ahead of breaking------
and I am the hunger and the assuagement,
and also I am the leaves and the blossoms,
and, like them, I am full of delight, and shaking.

Thursday, May 5, 2011

Lost in Translation

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.

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?
  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?

Tuesday, April 26, 2011

It's About Time

Keith and I are a little late in the game when it comes to watching the film Love and Other Drugs, but we aren't much into movies, so better late than never.  Although not the best film ever made, it's about time we had a real Hollywood movie with A List actors portraying what life with PD is like.

The film revolves around Jamie (Jake Gyllenhaal), a pharmaceutical rep and his love interest, Maggie (Anne Hathaway), an artist who suffers with Young Onset PD.  It's difficult to tell if this movie is about the pharmaceutical industry, Parkinson's disease, or love, because the plot is all over the board and changes direction rapidly.  It seems to want to fall into the typical romance-comedy genre, but the over-the-top explicit sex scenes and the somber reality of PD cause it to fall short of its mark.  In fact, the best thing about this movie is the justice it does to Parkinson's disease.  Tears streaming down my face,  it became increasingly difficult not to break down and openly weep.

As part of the back story, Maggie briefly explains her journey to a correct diagnosis, an important little tidbit often forgotten.  Most people don't realize that it can takes years to get an accurate diagnosis of PD.  She also discusses her lengthy list of PD meds.  Hathaway does an impressive job of portraying the early stages of Young Onset PD, with all its frustration, pain, emotional ups and downs.  We see the pinky tremor, we see her painfully trying to open one of her bottles of meds, we see her unable to do something as simple as open a package of Pop Tars, we see her cry in agonizing despair when she is unable to refill her prescription on time.  Someone in the research department, along with Hathaway, deserves an accolade for the reality of the disease they were able to find and bring to the film.  Especially poignant was the scene at the Parkinson's convention where real-life PWP speak about the disease, showing a vast array of symptoms and stages of PD.  It was during the Parkinson's convention that a scene truly spoke to me.
While at the convention Jamie meets a man whose wife is in the final stages of the disease.  Jamie asks his advice and the man tells him to run.  In fact, he goes on and on about how marrying his wife was the biggest mistake he ever made, how fast Jamie needs to run from Maggie, how soon he will be wiping up his wife's shit.  My jaw hit the floor as the tears started to pour.  Never before have I seen such a realistic portrayal of what those of us on the other end, those of us who happen to be young and fall in love with a PWP, go through.  The words Jamie heard from this bitter man are words I have often heard myself, almost verbatim.

For the past five years, with the exception of three very lovely ladies and their mates, any time I have asked anyone for advice the response is always the same - run.  When I ask for advice I am looking for something real, something tangible.  Which is better - pullovers or velcro-up shirts?  Wheelchair or mobility scooter?  How do get them in and out of the shower safely?  Any little tips for the curling up toes?  Give me something I can use, something real.  Just don't tell me to run.  I wonder if my questions, with all my enthusiastic optimism, is offensive to them?  Does it somehow make their own pain, their own sorrow, less valid?  Is that they way they see it? 

After watching this scene, I pulled it together enough to turn to Keith and say "Wow!  I hear that all the time."  "Really?  Still?" he replied.  We held hands, tears streaming down both our faces.  "Yeah, but I'm not going to run," I said.  At that moment we were both deeply moved, him by the negativity I face from others, and me by his compassion.  By the end of the film those roles reversed, as Maggie tells Jamie that she will need him more.  She will need him more than he could ever need her.  That is what Keith voices to me so often.  This time, I was the one crying in compassion for him and all that he goes through with this disease.

For a couple who rarely watch movies, this one really hit home.  It spoke to us on a level we still can't quite explain.  Maybe it was seeing it on the tv that did it, or knowing that people actually took the time to research and learn all they could about PD and cared to portray it with dignity and respect. Maybe it was seeing ourselves, each other, reflected back upon us.  At any rate, this film is a must see for anyone dealing with Parkinson's disease.

Friday, April 22, 2011

Thank You for Supporting the APDA!

Thanks to all of you who are supporting the APDA and Life With Shaky by purchasing products from our shop!  As most of you know April is Parkinson's Awareness Month, and all proceeds from Life With Shaky go the the APDA this month.  This has been our most successful month in sales to date!  We so appreciate all our supporters!  But it's not over yet.  You still have one more week to buy our merchandise and support the APDA!

Speaking of the APDA, they have recently named our very own G. Frederick Wooten Jr. MD, as their Scientific and Medical Affairs Advisor.  Keith sees Dr. Wooten several times a year, and we can't say enough good things about him.  Congrats Dr. Wooten!

We have taken a much-needed break from the blog for the past month as we focus on end-of-year schoolwork and another non-PD charity event, but we do have several more interviews to post, including videos by Keith and myself.  We will get on those following Easter. 

Thanks again to all those supporting the APDA through Life With Shaky!

Wednesday, March 16, 2011

The Difficulty in Getting an Accurate Diagnosis

There are so many syndromes out there with Parkinson-like symptoms, or parkinsonism, that getting an accurate diagnosis can take years.   Parkinsonism is any group of neurological disorders that have symptoms similar to PD - tremor, muscle rigidity, hypokinesia.  Among those are Multiple System Atrophy (MSA), sometimes referred to as Shy-Drager syndrome.  The National Institutes of Health recently published literature based on a study that shows autonomic assessments do not differentiate between PD, MSA, and PSP (progressive supranuclear palsy). 

 Keith's brother has MSA but was originally diagnosed with PD.  He and his family went through hell to get an accurate diagnosis, but even now most people, including some doctors, want to lump his condition in with PD.  Part of MSA is parkinsonism, and much of the treatments are the same, however, the two are different illnesses and should be referred to as such.  At a later date I will post an interview with his wife, but for now, here are some interesting links regarding MSA -

The National Institutes of Health's literature regarding autonomic assessments:

MSA Information:
National Institute of Neurological Disorders and Stroke


The Shy-Drager Syndrome/Multiple System Atrophy Information and Support

Sophie's Search for a Cure DVD (free from the SDS/MSA Support Group)

Shaky's Kids Interview with Bryan, Part II

The conclusion of my interview with my stepson and Shaky's son, Bryan:

Q: What advice do you have to give Young Onset PWP about raising children while dealing with PD?

Have a great spouse. Haha! But seriously, Mary SOOOO much. As for PWP, do everything you can with them, as often as possible. That ability is going to come to a slow, grinding, halt. I promise. One day you won't be able to pick them up and throw them in the air. One day you won't be able to spend the night outside in a tent, camping in the backyard. One day you won't be able to keep up with them when they take off running across the yard. One day...

Q: What advice would you give to other kids who are the same age as Joe?
Be patient. Sounds simple enough, but I know for a fact, it's not. Patience is something that, often times, actually takes cognitive intent to exhibit. Do what you can to help, learn what you can about the disease, and cherish every moment you have. Life goes quickly enough as it is, when there's a degenerative disease involved, that timeline is shortened.

Q: If you were to write a letter to your little sisters about your father, PD, and all that it entails, what would you say?
That would probably be a rather long letter, one that I would actually like to write, and may one day in the near future, but would take a TON of thought and time to write, and I'm not sure I want to attempt it now. Sorry.

Q: What do you think a parent needs to communicate to their child regarding PD? What is it that you think kids need and/or want to know?
Above all else, they need to realize that Daddy's not gonna be able to do certain things with them like maybe he used to. For little ones, especially if he used to be able to, and now can't, that's a pretty big deal. They won't understand it. They won't get why Daddy's tired, or can't do this, or that. When you're young, going and doing, those are the things that matter.

Q: Coming from a grown child's perspective, what is the most challenging or difficult aspect about having a parent with PD?
That's tough, but personally, I think the hardest thing is KNOWING. It's not like a freak accident, or a fatal disease that comes in quickly, runs it's course, and is done. It's here. It's here to stay. For the duration. However long that may be. It's here, and you know it. You know things will only get worse, but there's absolutely nothing you can do to change it. Make it better. Slow it down. Stop it. It's gonna happen, and knowing just makes it worse, to me at least.

Q: Do you ever feel burdened or obligated to help your dad?
Burdened? Obligated? No. Maybe. I don't know. I'm not sure how to read this, but I'm reading negativity into it. If that's the case, no. I don't. I know he needs my help with things. I try to swing by when he's got something he needs a hand with. I know sometimes I don't get by as quickly as I feel like I should, but there's no one that can change that but me...

Q: Do you ever have the feeling that you should do more? If so, how do you handle those feelings?
Sometimes. Life is busy, unfortunately. And sometimes, "life" takes precedence. Not that I'm saying that makes it ok, because it definitely doesn't. I try to help when I'm needed, but I've never been one to just think about something that needs doing, without being asked. That's one thing Mom used to, and still does, mention from time to time. If I'm not asked to do it, it usually won't get done. It's not because I don't want to do, or am not willing. It's more so that I just don't realize it needs to be done...

Q: Do you ever think in terms of 'worst possible scenario?' and if so, what would that be?
No. I don't allow myself to go there. I take it all a day at a time, and enjoy each moment for what it is. Another precious moment. I've only recently learned to do this with life, but it's made all the difference.

Q: Do you see yourself in a caregivers position at some point in the future?
I'm sure I'll end up helping out, I guess how much is to be determined, and will depend on a lot of variables.

Q: If anything were to happen to me, Shaky would require help raising your younger siblings. How does that make you feel?
I love them almost like they're my own. Would it be tough? I'm sure it would, but we'd make it work. No question.

Thank you so much, Bryan, for an amazingly honest and insightful interview!

Saturday, March 12, 2011

Parkinson's Interview with Ben and Michelle, Part III

The final interview with Ben and Michelle!

Q:  Do you feel you currently face special challenges in your relationship because of PD?  What challenges, if any, do you see in the future?
Ben:  I think that we have enough other challenges that PD doesn't seem to be that big.  I'm learning to live without being controlled and structured like my last relationship and I'm still enough of an engineer that I like to think through all the steps of a project while Michelle is more jump in with both feet.  At this time PD is inconvenient and who knows what the future holds.
Michelle:  I don't think we have any special challenges right now.  Ben's right - life's full of a lot of other things right now, with kids and college and work, etc.  We can't know what the future holds.  We can see where other people are, and work from there, which is what I try to do.  I try to look long term where I can.  When we bought our home, I wanted to make sure it had enough space and a good layout so that we could both age in place here, for example.  We are currently looking for a vehicle with many of the same considerations.  I don't, however, think our methodology is any different than a wise person without PD would plan for his own later years.

Q:  What do each of you do individually to try to stay on top of this disease and not let it break you down?
Ben:  PD isn't a death sentence it is a way of life that is inconvenient and it isn't going to rule my life.  There are things I'd like to do - play golf, ride motorcycle, do more yard work and I know that I can't.  But I'm going to do as much as I can everyday.
Michelle:  Ben is absolutely correct, and "Go with the flow" is our mantra.  As for me individually, I find that I'm happiest when I'm busy.  In the summer, I garden and landscape.  In the winter, I do a lot of crafting.  I also write, paint, and listen to music.  These things feed my soul, and help reduce my stress.  I love to go 'treasure hunting' at secondhand stores, and most of the time Ben and I have a project that we've drug home from some junk store and we're refinishing together.  I think working creatively with our hands feeds us both.  We have also worked together (but on separate areas) of larger home improvement projects, such as last years' project of building a sunroom onto our home, and that is very satisfying.
I also see a counselor that I feel comfortable with, and touch bases with him for 'tune-ups' a couple of times a year or when it gets to feeling too crazy, and I have a massage therapist just for stress relief once a month.  PD is most of the time the least of our worries, in and of itself.  There's usually kid issues, other health issues, work stress, etc to tackle before we worry about that.  The PD just makes balancing stress more challenging.

Q:  I like the idea of having 'tune-ups' with a counselor.  Does Ben ever participate in these sessions, or are they strictly for you?
Michelle:  We have gone to a couple of sessions together and we both feel like it's been very helpful and insightful both individually and as a couple.  However, Ben's easygoing demeanor and approach to life means that he just doesn't get as stressed as I do most of the time.  (That may also be partly due to an inherent difference between men and women.  I'm still a working mom with a full time job, two teenagers, and outside responsibilities, even outside of PD!)  He has done some solo work with his own individual counselor, which was fantastic, but most of the time he gets along pretty well on his own.  He's always open to joint sessions whenever I feel the need, which is great.  I love that he believes wholeheartedly that if one of us has a problem, then we have a problem, and is willing at any time to do what we need to do to get back on track.  That kind of openness is what makes us strong as a couple.

Q:  Do you have a good network of support?  Family, friends, online communities, coworkers?
Ben:  My family has been supportive from the start.  Most others can't tell that I have a medical condition and I'm pretty independent so I'm not going to go looking for someone to talk to.  I saw a couple different counselors along the way and I will probably return to talk to them in the future, just to make sure that I am still tracking well.
Michelle:  I feel like I have a fairly good network of support now.  It wasn't always that way.  I've been actively reaching out to build that network recently, because it needs to be in place before you need it.  And as I get older, I understand more about how we need that contact and support, even though I'm more of a solitary sort of person.
I have four strong, loving children and their respective spouses, coworkers who are also friends, rebuild some broken relationships with my extended family, built strong relationships with Ben's family, and have online friends and online communities that I'm a part of.  I believe that we are establishing good solid relationships with our medical staff, particularly the new ones.  I feel like there's a good size web to draw on when times get tough.  And the wonderful part is that each person is different, with a different perspective to contribute.
I think that time we've spent with our respective counselors, even just here and there as needed, has been really beneficial.  Many times an impartial outside voice has been able to open dialogues between us in different ways than we would have ever thought to on our own.  I know it took some hard work with my counselor to overcome my fear of talking to Ben about PD, which can sometimes be the 'elephant in the room' when you're trying to go on about your life and not focus on the negative.  Outside counseling isn't for everybody, but a little insight or guidance goes a long way, however we go about getting it.

Q:  Michelle, can you go into specifics about why you had fears of talking to Ben about PD? 
Michelle:  People have trouble talking openly about most tough personal topics (illness, death, financial difficulties, etc) in general.  Who wants to be the one to inadvertently poke their finger into someone else's sore spot?  We as spouses, families, friends also want/need to maintain our relationship with that person and the way we know them for as long as we possibly can.  If we pretend that elephant isn't there, then all we have is what we choose to believe.  It's a nice little psychological dance, and it's about preservation on many different levels.
But it's also about love, respect, and that's a lot about not treading on someone else's hope.  We always keep coming back to hope.  The last thing in the world that I want to do is focus on the disease, which gives it power.  Some cultures believe that if you give the devil a name, then you've acknowledged him, let him in, given him power.  Isn't that somewhat like what we believe here in our culture about things like PD?  As long as we can act like life is pretty normal, PD for the most part remains an inconvenience and not a disability.  We both know that harder times are coming.  He doesn't like to dwell on it, and I don't blame him.  It isn't denial, because we deal with PD-related issues and challenges as they occur, but there is an element of self protection involved.  Also, right now I'm his spouse.  In time enough I'll be in a different role.  We need to have these good times now, without tainting the experience with worries of what may come later.
The bottom line is that I hate talking about it as much as he hates hearing it, but there are times that we have to have conversations about tough things as a couple.

Q:  Ben, how have your symptoms changed since you first began to show signs of PD?
Ben:  My progression has been a lowering in my energy level.  I get tired quickly and have to rest more often than I would like. 

Q:  Have you had any progression at all of physical symptoms?  An increase in cog-wheeling, rigidity, etc?
Ben:  There has definitely been a lowering of my stamina.  I can't do as much as I once did.  The worst symptom for me is the muscle cramping and rigidity when I do overexert.  That has gotten progressively worse.  I am able to do less and have the cramping occur more, and earlier.  For example, in the early years, I would be able to pound twenty nails before it set in, and now I can only get to ten.  I'm also seeing some dyskinesia.  In the early years, I never had dyskinesia.  Now, I have it seldom, but It's becoming more often.  The progression has been from less stamina to more cramping to dyskinesia. 

Q:  Have there been any instances where someone you don't know very well has commented on your symptoms?  If so, what did that individual say and what was your response?
Ben:  I have gotten a few comments from people about stopping to rest that I usually ignore.  When I get pressed for an answer, I bring up MJF and try to educate the person about my limitations.  Most of the comments are when I'm dragging my left side, it looks like I've got a sore leg and I tend to come back with some smart remark that is meant to be funny.

Q:  Michelle, has anyone ever commented to you about Ben's disease in a negative manner?
Michelle:  No one would dare to comment to me in a negative manner on that subject.  Most of them know better by now!
However, we have had a couple of incidents that have set the hackles on my neck arise.  One was with a coworker, who made some sarcastic comment to us about Ben being 'drunk in public'.  The real situation was that we were at an outdoor concert with on-the-grass seating for several hours, which meant that he was stiff, shaky and sore when we finally got up and moved around.  I was walking with him on my arm, to give him a little bit of something to balance on, when the coworker stopped us.  The coworker is with the Police department, so he was out working crowd control.  I don't know whether he actually thought Ben was drunk, or if he'd stopped us just to chat.  But I knew that he knew Ben had PD, and whether or not he was just ribbing us, it rubbed me the wrong way.  What made me angriest is that he pressed the issue, and I don't believe we should have had to give an explanation, especially in public with other people around watching him getting questioned by a police officer.
The other incident was also work related.  His meds have historically caused a great deal of nausea, which he has found nicotine useful in mediating.  The meds have to be taken several times a day, including during the work day, so it isn't unusual to see him outside in the smoking area a couple times during the day.  He doesn't take more than the allotted to all workers for breaks, but he is currently the only employee that smokes, which makes him more visible.
Recently our city has adopted a wellness program, administered by a few of the employees in the office that fall under the category of 'health nazi.'  It's an optional program, but they don't treat it that way, and they have a history of bullying people who aren't living up to their health standards.  I came up to the reception area one morning to find them all sniping about Ben's smoking and how they were going to 'have a little talk with him about it', and if he didn't quit they were going to turn him in to management because it 'looked bad.'  It was the last straw for me, and I just let them have it.  The end result was that they were all told by management that they were not to discuss him at all. period.

Q:  Michelle, in what ways do you help Ben manage his PD?
Michelle:  At this point, there's not a whole lot that he needs from me.  Small things, in subtle ways.  In our old house we used to have a tub shower rather than a walk in shower.  It was slippery and hard to manage, even for myself.  We found that showering together was safest and most pleasant, and when we got in and out, I'd give him an extra hand to hang onto or a hip to lean against.
I'm also the backup person on meds.  I keep a spare set of daily pills in my purse, in case we are out of the house and run out or forget.  I have a pill alarm on my phone, especially for mid-day pills during the summer months, when we're frequently either out and about doing stuff, or working in the garden or shop, where we both get distracted and lose track of time.  I'm his secondary reminder.
I regulate the household, and try to pick up the slack when he's fatigued and keep the house quiet when he naps.  I think early on he felt awkward napping during the day and interrupting the flow of my routine, so I began taking naps when he did.  Now it's just what we do;  it's good for both of us, and gives us another hour or so of alone time.
Another small thing I learned from  him was when doing the laundry, we keep his button up shirts buttoned up to the second button from the top, so he can just slip them on over his head like a pull on, which minimizes pesky small button fumbling in the mornings.  I'm the relief driver when he gets tired.  I try to do little things that make his life easier. 

Q:  Ben is obviously a very capable man.  Do you see yourself currently as a care partner or as someone who could potentially be in that role in the future?
Michelle:  'Care partner' is sort of a loaded term.  Certainly I'm not providing 'care' in the classic sense at at his time, though I will be in the future.  However, we are partners in his health care.  I go to all of his important appointments, including his PD checkups, and we are both very active in health issues.  We research, monitor, and discuss health issues as a team.  At some point in time, I know that the balance of these responsibilities will shift, but we aren't there yet.
We have discussed the future and what we will do as things get worse, but to be completely honest, the specifics are still up in the air, as there are certain items we didn't agree on.  I had always viewed myself as his eventual care provider, while he leans more towards sparing me that task and hiring an outside care provider.  I think some things have to be finessed as we get closer to that time and understand more about where we are in the scheme of things.  Time may change how we wish to handle that.

Q:  You have brought up an interesting topic - care by you, or care from an outside source.  Dana Reeve once stated in an interview that counselors suggested she not act as her husband Christopher's nurse, or main caretaker, in order to prevent resentments and burn out.  Do you feel this is a possibility if you take on that role with Ben?
Michelle:  Here's where we differ:  I don't.  I know he does, perhaps because he knows more about it than I do.  He was a caregiver to two other family members with PD in late stages, so I think that has a great deal to do with the things he wants to 'spare' me.  I think that it's an emotionally charged issue for him.
While I acknowledge that having outside assistance would be immensely beneficial, I would be heartbroken to be shut out of the process entirely. Is it practical or even imaginable to live in the same household as your husband and live as a roommate or acquaintance?  That's what handing over all care to an outside caregiver would amount to.  I like the idea of being primary and having a secondary caregiver, rather than vice versa, and here's why.  As spouses, we share many intimacies.  I don't think that has to change.  What greater love and honor than to care for the body so familiar, that I have loved and has loved me for so long?  He's not my parent or extended family member - he's my spouse.  I think that makes things different; for me, at any rate.  There's nothing about caring for him that will make me think of him any less, nor any less of my mate, if you know what I mean.
We could get into a whole other debate about the difference between couples in which the relationship devolves into a patient-nurse, non-intimate one vs. those who are able to perform (and receive) care without losing the intimacy of couplehood, but that's a whole other issue.  I wholeheartedly believe that the second option is possible, and that we can hold onto that.  Is that one of the patients' fears?  I can only imagine that it would be.  I've heard some pretty bitter and disturbing things from caregivers who have let their relationships devolve, and I know the patients hear the same things I do.

Q:  Have the two of you discussed what the absolute worst possible scenario would be for your situation?  If so, what would it be and how to you plan to manage it?
Ben:  Mobility is concerning.  I don't think that I would be very good at being pushed in a wheelchair.
Michelle:  When I think "worst case scenarios" I think along other lines, like complete disability and end of life issues.  We have both anticipated these scenarios by getting our wills, DPA's and living wills drawn up so that we have a clear plan for unexpected times.  No matter what happens, I have faith that we can face it together.

Q:  Can you give me a timeline of all the PD medications you have taken,  both past and present, and in what dosages?
Ben:  I was first given selegiline at my initial neuro appointment.  That lasted about a year when I started taking Requip.  I was able to function well on 8 - 10 mg/day for about 8 years when I added 1 - sinemet 25/100 twice a day.  My new neuro has be taking 2 sinemet 3 times a day and 1 - 12 mg Requip XR.

Q:  Have you experienced any negative side effects of any of these medications?
Ben:  I had problems with Requip causing nausea an hour after a dose.  The only thing I found that would help was to take up smoking again after having quit for 12 years.

Q:  That is very interesting.  Studies have shown that smokers have a decreased risk of getting PD, and now for you, smoking helps with the side effects of Requip.  Have you found it to help any of your other symptoms, as others with PD often do?
Ben:  I really can't attribute any change in my physical symptoms to smoking.  There hasn't been any sort of physical benefit that I can determine from smoking, other than help with the nausea.  Now that I'm on the Requip XL and the nausea isn't a factor, it fills the time that I'm up walking around and stretching out a little bit after sitting for a long time, getting rid of the stiffness and cramps.  I feel better after that break.  Who knows if it's the nicotine giving any sort of benefit, or if it's just getting up and walking around?

Q:  What, if anything, are you doing to treat the disease other than taking medication?
Ben:  I'm ignoring it as best I can.  Michelle has some fish oil and Co-Q 10 that I'm trying to remember to take.

Q:  I want to switch gears here and get into the politics of PD a bit.  Where do you stand on embryonic stem cell research?  For it or against it, and why?
Ben:  How can you be against using tissue that would be destroyed anyway?  If you don't want the embryos to exist then outlaw the procedure that creates them.
Michelle:  Definitely for.  We aren't talking about 'wasting' or 'killing' babies here.  Those small bundles of cells are destined to be destroyed no matter whether we intercede and use them for stem cells or not.  I believe that there is great value in stem cells, and that someday we will understand how to use them well enough that they are going to make great changes in how we handle a lot of conditions.
I feel that a lot of people who are against ESCR on a moral basis might feel differently if they or their loved ones were the ones waiting against time for someone to find something that bought them a little more time in this world, especially if that something arrested or reversed the process of their disease. 

Q:  That these embryos used for stem cells would be destroyed anyway is a strong argument in favor of ESCR.  Why not use what's going to be destroyed, especially if it can save a life, or increase the quality of one's life?  On the flip side of that, opponents argue that allowing ESCR with already harvested embryos may encourage banking, or massive harvesting for the sake of research.  Do you think that's a possibility?  How do you feel about that?
Michelle:  It could only be a hazard if it's uncontrolled.  I think that's what regulation is for .  There will and must be limits set on this process, as there are limits set on every other process.  Unfortunately, I think there are a lot of embryos being generated at any given time, so the impetus for someone to do massive harvesting or artificial creation would be fairly low.  Demand would have to outstrip supply to a degree where society would support such a controversial technique in order for that to happen.
I'm happy with the current proposal for progress.  I think if we push harder, we're pushing into people's belief systems, and we won't get anywhere but stepped backwards.  If we can show some results, that will go a long way towards easing the process.

Q:  Do you feel that the government is doing enough to fund research for a cure?
Ben:  It's a partnership between the government and private research that is most productive.  The government can only fund a certain amount for research and there are worse things that you can be diagnosed with.
Michelle:  Hard question.  Coming from a governmental point of view, it's hard to have every single issue look to the government for funding.  I have a budget at work.  If I had fifty people coming to me for special projects, I wouldn't be able to fund my own work.
However, that said, I wish for MORE funding, because I'm selfish - I want my husband happy, healthy, and with me for as long as possible.

Q:  In your opinion, is government funding for PD research a bipartisan issue? 
Ben:  I don't have much faith in the government of either party doing more than minimal funding for the near future.  There doesn't seem to be very many issues that are allowed to be bipartisan and I don't think that PD is enough of a headline grabber to get pushed through.
Michelle:  I'm going to pass the political questions to my better half.  He is far more eloquent.

Q:  It seems to be quite a headline grabber when embryonic stem cell research is on the table.  Were it not for this hotly debated issue, PD and the government might never have crossed paths in such an open forum as we've seen in recent years.  If it were not for this exact issue, do you think PD research would be further behind where it is today?
Ben:  No.  I don't think that the government is funding PD research at this level as an olive branch for the stem cell people.  The PD research that is being undertaken now is based on percentage of population who has PD, not that there is a 'hot button' item of embryonic stem cell research that people have to be placated over.

Q:  When it comes to government funding, where do you think most of the money come from?
Ben:  My guess is that the National Institute of Health probably oversees most of the dollars for research.

Q:  Do you think "ObamaCare" will help or hurt PWP? 
Ben:  The current system of un-insured patients will create more problems for the health system and continue to pass the costs of the un-insured to those who have insurance or assets.  Being able to get coverage isn't as important as making sure that everyone shares the risk of paying to treat illness or injury.

Q:  Treatments for PD can be expensive, especially in the later stages.  Many PWP will require home health, mobility equipment, alterations made to their homes.  Should insurance cover only the most basic, traditional forms of therapy, like medication, or everything that would assist a PWP in getting through their day with the greatest of ease and comfort?
Ben:  I know this may be a controversial answer, but: No.  The government/health care shouldn't cover everything.  Insurance is to cover the cost of your treatment, not the cost of your well-being.  You can't pay to remodel everyone's house simply because they have a disease.  You can't pay everything for everyone, or basic health care will be sacrificed. 

Q:  What do you think of celebrities raising awareness for PD?
Ben:  It makes explaining my problems easier and I do get some feedback about programs that people see on TV about PD.
Michelle:  Amen, brother!  We need as many voices out there as possible, preferably ones that the general population want to listen to.  Celebs have the most influence there.  After all, would you rather hear about a condition that needs your attention from some guy in a white coat, or The Greatest boxer of all time?  Or a young NBA star?  Or Ryan Reynolds, the Sexiest Man Alive?  Or Alex P. Keaton?  People worship celebs, for good or bad, and what they say carries weight.  I say, let as many of them as possible pick up the banner and carry it as far as they can.

Q:  Many public figures have PD but don't speak out about it as often as others.  Do you think they should?
Michelle:  I think everyone has a right to privacy if they so desire.  I'm overjoyed if they decide to take up the cause, but they have to put their own welfare primary.  We forget sometimes that they are only human being like the rest of us.  Some need to 'hole in' and fight private, while others find solace in more activist pursuits.  Both are equally valid. 

Q:  Michael J. Fox has been highly praised for the role he play is raising awareness and in funding research for a cure.  However, some have criticized his descriptions of PD as not being real enough, and not showing how serious and devastating the disease actually is.  What is your take on that?
Ben:  It is as serious as you make it.  He is continuing with his life and not letting PD rule his existence.  It seems like every time you see him on TV, he is in the middle of a bout of dyskinesia and not letting it bother him.  He and I are about the same age and started about the same time.  He quit show business because of the long work days and has been able to continue with his family and a limited number of appearances that allow him to stay in front of people without wearing himself out.  He isn't going to let it control his life, neither am I.
Michelle:  I'm really tired of the great debate about MJF.  The man has put himself out there, for good and for bad, and takes a lot of heat for doing so.  Instead of tearing him down for not being 'off' enough, or for being 'too upbeat' and not depressed enough or disabled enough, I wish people would look at him and think "Wow.  That takes a lot of guts to decide to live the best life that he can, not let PD beat him, AND to go out into potentially uncomfortable situations and talk about personal and private challenges in an honest way."  He's using his own personal discomfort to benefit everyone else, and that should be lauded, not bashed.  I know bitter people just want to be bitter, but it takes a hopeful person to lead us into hope, and back into life.

Q:  Has PD ever interfered with your relationships with the children?
Ben:  There have been times that I couldn't do things with the kids that I would like to.  I miss playing golf and some of the other things that require physical activity.  Even as simple as not going to the moves because I can't sit for 2 hours straight.  And the dreaded "shhhhh - dad's taking a nap."

Q:  In what ways have you had to adjust your lifestyle to accommodate PD, and have the adjustments affected the children?
Ben:  I miss playing golf and some of the other things that require physical activity.  Naps are nice.  I've always done everything by myself and it's hard to remember that I can have some help when I need it.

Q:  What are some of your favorite hobbies?  
Ben:  Sudoku, wood working, reading, music.  Typical engi-nerd.

Q:  As a couple, have you adopted any new routines, schedules, activities, etc because Ben has PD?
Ben:  I'm not going to make more restrictions than I have now.  Naps are nice and Michelle  sometimes joins me.  Sometimes I need to be in bed too early for Michelle.
Michelle:  See "napping" in one of the questions above!  And we've taken up the Wii, trying to get some exercise.  Mostly we are like any other couple.  We haven't had to really make many accommodations yet.  Ben would say that we live life as if the PD doesn't exist, and that's honestly been our best strategy yet.  We cross bridges as we come to them (although I do like to at least see them on the map first!)

Q:  I have heard of PWP using the Wii as a means of exercise.  That can be a fun way to get moving and spend more time together as a family!
Michelle:  Oh, it's been fun!  But watch out for the dreaded "Wii elbow"!
Seriously, we play with family when we can, but mostly Ben and I play together or separately.  We like the variety of games, and currently have the balance board with the Wii Fit Plus, the Wii Sports Resort (with all the attachments), the Wii Sports and Wii Play.  Between those, we find something that's interesting most of the times we pick it up.  I like the fact that we're gaining balance and body awareness, which the board does a good job of pointing out.
There are a lot of studies using the Wii with PD and elderly patients touting the maintenance of good range of motion and body mechanics.  And one of my favorite bloggers, Peter Dunlap-Schol, has just posted a series about his (mis)adventures with PD and the Wii.  Hilarious stuff - check it out:  Off and On: The Alaska Parkinson's Rag

Q:  In closing, what advice to you have for young couples who are dealing with PD?
Ben:  It isn't the end of the world and there are a whole lot of worse things to have.  Don't give in to the tendency to self pity or take out your frustrations on the other.
Michelle:  Don't give in to it, and don't make PD your identity.  Do be prepared; there's a road map for PD drawn out by others who have taken these same roads.  You won't see all of the sights, but most of the sights you do see will be on that map, so it's to your benefit to know what could lie ahead.
That said, take things as they come, live life, be happy, and don't worry.  Not one thing in life has been changed by worrying.  Invest your energies into being the best partner you can be for your spouse, both of you, and your love and care will be the best investment  you ever made.
Above all, don't be afraid to love someone who has PD - it's a bum card, but it's not a death sentence.  Keep the faith, and stay connected with the rest of us!  We all need each other's support.

Q:  I really like the way the two of you make a point to say that PD is not a death sentence.  Why do you think so many individuals feel it is?
Michelle:  I think that's everyone's first reaction when they or a loved one are diagnosed with a long term, chronic illness.  There is a tendency to jump to the worst case scenario and get very overwhelmed.  It's a natural reaction.  But in reality, there are drugs and treatments, there are lifestyle changes you can make to improve your outcome, and the disease itself has a fairly long arc.  If you look, there are people out there having good, satisfying lives, even with PD.
I hate to say this because I don't want anyone to take it wrong, but a lot of what you get out of life has to do with what you put into it.  If  you want to be an invalid, there are plenty of opportunities to do that, but the people that continue to get things out of life won't lie down and let PD beat them.  Rather than doing things BECAUSE of PD, they do things in SPITE of PD.  Don't hang up your hiking shoes until you see what's around the next bend.
Can't say it enough.

Thank you Ben and Michelle for an AMAZING interview!

Wednesday, March 9, 2011

Shaky's Kids Interview with Rielly-Anne

Rielly-Anne talks about her PD children's book -

Shaky's Kids Interview with Bryan, Part I

Here is what Bryan had to say about having a father with Parkinson's disease:

Q: What is your age and occupation?
27, Dental Technician

Q: How are you related to Shaky?
He's my Dad

Q: How old were you when he was diagnosed?
22 or 23 I believe.

Q: Was your father's diagnosis of PD upsetting to you? Why or why not?
Sure. For many reasons, but mainly because of the unknown, and from what I had already seen in my Uncle Eddie, who has Parkinson's plus/MSA.

Q: What were some of the symptoms you noticed in Shaky?
The only thing I noticed initially was tremble when he ate soup with a spoon. The spoon always shook. Other than that, I didn't notice a lot until things progressed a bit further.

Q: Did you have any knowledge of PD prior to your dad showing symptoms, or getting a diagnosis?
Only what I had seen with my Uncle Eddie, which isn't the same animal as regular Parkinson's, but yes, I guess I did.

Q: Have you done anything since Shaky's diagnosis to educate yourself more about the disease? If so, what?
I have. Not as much as I should, and I realize I'm the only one that can change that, but yes, I have. I went to a seminar with him, I've read up on quite a few websites, but could definitely do more...

Q: You've had the addition of two younger sisters since your father's was diagnosed with PD. Looking back, have your feelings regarding Shaky expanding the family in the face of PD changed any? If so, how?
Quite a bit. When the decision was made to have another child, I was pretty apprehensive. I thought, is that REALLY the brightest idea? I mean, Dad's getting older, PD is going to creep in more and more, why complicate things?

Now? I wouldn't trade EITHER of them for the WORLD. Sure, life is different with them. Can they be a handful at times? Sure. Any more-so than any other kids? Nope. Do they bring more joy than difficulty? BY. FAR. I'd like to think I speak for all of us when I say they've taught us all things we may never have learned without them. Hand in hand, with PD, teaching us day in and day out, that every second counts. Don't waste it. Blink. There went a second you will never get back. Blink... there went another. Tomorrow is NEVER promised. "There will come a day..."

Q: What differences do you, as a brother and as a son, see in the way Shaky parented you and how he parents your younger siblings, in regards to PD affecting his ability to parent?
Hard to say because I don't really have a lot of memory from being that young. He's definitely a great Dad to all of us. It's plain to see those two little angels have him wrapped around their tiny fingers.

Q: Has PD changed your relationship with Shaky in any way? If so, how?
I'm sure it has, but I wouldn't necessarily attribute it solely to PD. A lot of things in my life in the not so distant past have changed my outlook on things. PD is certainly part of that. I feel like I don't take things for granted as much as I used to, although I still find myself doing it from time to time. Some of that is human nature, I'm sure, but regardless, I try my hardest not to. I know things will only progress, which makes the here and now that much more precious.

Q: What are your biggest fears and worries about your father having PD?
I try my hardest not to worry. It won't do anyone any good. Sometimes it's inevitable though. I worry about when things get worse. I worry about whether I'll be nearby to help, or if I'll be able to be selfless enough to help as much as I should. I worry about not being nearby in the event of some random accident. I worry that I won't have the patience I need. I notice myself occasionally being impatient already, with his general pace of doing things, and know it will only slow more and more with time. I worry about losing him, although none of us are promised tomorrow, so that's not as much of a PD concern as it is a general fear/dread.

Q: Do you think that one day you or your sisters will get PD?
It's a possibility, and from what I've read, a bit more likely with a father that has it, but stressing over it won't do me any good, soooo, yeah. Until that day comes, does it really matter?

Q: What bothers you the most about Shaky having PD? Is it the symptoms, the possibility of becoming fully disabled one day, the fact that it could run in the family? Please explain.
Yes. Yes, as in, all of the above. The symptoms, they're just symptoms. We learn to deal with them as best we can. Patience is the key there. Fully disabled, sure, that's a huge worry. Running in the family is also a worry. But again, what good is worrying going to do anyone? Absolutely. None. So I try to do it as little as possible.

Q: Have you noticed any cognitive changes in Shaky? If so, what are they?
Ummm, maybe. He seems to forget things a bit more than he used to, but I'm not entirely sure PD's to blame, and not just the general aging process. He is an 'old geezer', after all. ;-)

Check back next Wednesday for the conclusion of Bryan's interview!

Saturday, March 5, 2011

Parkinson's Interview with Ben and Michelle, Part II

Here is more of what Ben and Michelle have to say -

Q:  Explain how you told the rest of your family, your children and your friends that you have PD?
Ben:   I'm pretty blunt.  I just put it out on the table and say here it is... I have PD and I can't do some things any more.
Michelle:  The time of our getting together and moving in together was pretty hectic and blurry.  I don't remember a lot about that time, but I told the kids at that time.  They did much of the research on their own.  I told the family and close friends as necessary.

Q:  How did your children react to the news?
Ben:  My daughter was 12 and knew that something was wrong.  Being able to put a name to the problem was actually helpful and after a few months, it got to be just one of those things that you live with.  Most of my symptoms were pretty well covered by the medications so I was able to keep going.
Michelle:  Mine took it mostly in stride.  We were still learning how to be a family at that point, so that news took a back seat.  I didn't realize that they had learned much about it until my daughter chose PD as the subject of one of her school research papers.

Now, several years later, it comes up from time to time.  I try to make them aware when we have things out of the ordinary that we need to accommodate (like when he's fatigued and grumpy after a period of high stress, or when he can't get back to sleep when teenagers get up and rummage around the kitchen at 3 a.m.), so that they learn how to be considerate.  I have talked to them about it a little bit, enough to know that they have a pretty good handle on what it is and what our limitations are.

The bottom line, and the most blessed thing, is that they love him (and vice versa), and I have no doubts that they'll be here for us/him whenever we need them.  It's taught them to be better people and has strengthened our family bond, in much the same way that our daughter's serious illness a few years ago pulled us all together.

Q:  How did the rest of your family and friends react?
Ben:  Everyone has been very supportive.  I asked for some concessions at work so that I didn't have to be on my feet as much.  For the first 4 or 5 years I was able to continue my job duties as a construction inspector watching projects building roads and water projects.  But after that, I started to need to sit down and rest more.  About 4 years ago there was an opportunity to move from engineering to planning and implement a Geographic Information System for the city that allows us to father information and answer questions about the people and infrastructure for future development.
Michelle:  I would say that our friends have been largely supportive.  I personally did not have a large circle of friends to begin with other than coworkers.  "Being in a relationship with someone with Parkinson's" wasn't as big a deal as "being in a new relationship" at the time.  We went together to a select group of coworkers to 'break the news' of our relationship, which was a big scandal at work for a while.  (Coworkers dating aren't prohibited, but it's a small workplace and any thing out of the ordinary is grist for the gossip mill.)  It was about the PD, but more about two people getting out of crazy, bad places in their lives and finding peace with each other.  I think most people who were close enough to know what our situations were could definitely see a positive difference when we got together.

My family, on the other hand, has a medical background, so I knew that they understood the implications of the issue.  There is also an age difference between us, which I was actually more concerned about as far as people's reactions.  I was afraid that I would be criticized for my choice to enter into a relationship with Ben because of both factors, but I think they saw right away that it a good, healthy place for me and the kids (which is a big change from the last twenty years of my life), and it didn't take long for them to get totally behind it once they met him.  (In fact, sometimes I think they like him better!)

Q:  Ben, how do you foresee the remainder of your career as it relates to PD?  Will you need to ask for more concessions in the future to continue through to retirement, or do you think you may have to retire early or go on disability?
Ben:  You're really asking if I can make it another 10 years to retirement if I have concessions.  I'm halfway there.  I was 42 when this all began.  I need to go to 67 to retire.  I'm 55 now.  The degrading of my physical abilities has been a matter of stamina.  As far as my mental abilities go, I actually feel as acute mentally now as I did ten years ago.  As far as adding other concessions from my employer, minor changes in equipment may be necessary to do my job.  Some concessions are already ongoing.  I recently changed to an ergonomic mouse in response to a joint injury and recurrent pain.  You could also look at the way that they have handled some of my personal habits like smoking as a concession.

Do I see me making another 12 years?  Most of the time.  Do I think it will actually happen?  Probably not.  I'm glad that I have my disability lined up for when I need to take it.  It takes the pressure off.

Q:  Michelle, what made you decide to head full-swing into a relationship with a PWP?
Michelle:  What makes anyone decide to head full swing into any relationship?  I decided that I was going to set PD aside and go into this as I would any other relationship.  I looked at Ben and saw an incredible man that I wanted to spend the rest of my life with.  He's strong, even-tempered, loving, giving, fair, quiet, and incredibly smart: everything I'd been looking for in a partner.  He was willing to take me, as flawed and broken as I was, and take my children as his own.  I admired him, I felt very comfortable with him, and I knew that we could be good for each other, and I was right.  I knew that PD was a part of him, but it was only one of his characteristics, like blue eyes or shoe size, not the thing that defines him.

If I had to choose one statement that stands out about Ben, it's that PD does not define him.  He isn't a "PD patient with a job and a family", he's a man: a skilled craftsman, a valued partner, a beloved father, a friend, an amazing individual with hopes, dreams, skills, and emotions that also happens to have PD.  I feel that if we choose a label like "PD patient" or PWP, it has the danger of becoming a very small box that defines a person, and the real self can get lost.  When I looked at Ben, I didn't see PD, I saw Ben.

Q:  Do you feel that those with Parkinson's, including Ben, are often defined by their illness?
Michelle:  Unfortunately, yes.  For outsiders, the most visible part of an individual is often the disease.  As things progress, people tend to forge that there is a person behind the symptoms.  One of the worst contributors to this problem is the facial masking.  Many times when talking to patients it emerges that the most crucial thing they want people to know is to "Remember - we're still in here".  At this point in time, I think Ben is able to hide PD really well, so most observers can't tell.  His most visible symptom is the fatigue and energy crashes.  He had some left side weakness and a slight limp prior to seeing his new neurologist, but a change in medication took care of that.  I think one of his biggest fears, if I had to guess, is that people will define him by his illness.

I do believe that the hazard is even greater when those with PD begin to define themselves that way.  We all know that depression is biochemically a part of the picture to begin with, and a very real hurdle.  When patients are surrounded by people, well wishing or no, that are filled with pity and condescension for the illness; when the subject of every conversation includes reminders of the things that they already can't do or will not be able to do; when we focus too much on the tomorrow and forge to live in the today; it's all too easy to lose the hope that keeps up all moving forward.  In every chronic disease, hope and the drive to get to tomorrow are key in keeping people as healthy as they can be for as long as they can.  People who lose hope lose it all.  There is countless evidence that human beings can literally thing themselves to death.  I think we owe it to ourselves and to our loved ones, both as patients and as caregivers, to believe in that quality of life and to pursue it as long as we can.  Look at the exercise studies - as long as you're using it, it takes longer to lose it.  Hope works the same way.

Q:  Michelle, what were some of your biggest fears about PD, and were you concerned about how it would affect your relationship?
Michelle:  My biggest fear is, and always has been, losing him.  All couples have to face that someday, no matter how healthy they are.  Either of us could be called home at any time.  I have a huge fear that, having waded through so much fire to find each other, any time we have left is too short, and very precious.  I feel 'hungry' to be with him much of the time, and it comes from that feeling that we started late in the race and that time is shorter than we'd like it to be.

On the other hand, the view that those remaining moments are too precious to wast is a gift in and of itself.  However, I am concerned that it makes me hang on too tightly, and I am sometimes afraid of making him feel smothered.  It's hard to balance how you feel inside with how you react on the outside.

Q:  In what ways do you feel that you may make Ben feel smothered?
Michelle:  I talked earlier about killing hope by trying to be over prepared.  In trying to  make his life easier by anticipating his needs, I think there's a danger in 'mothering' him too much.  It's a real challenge balancing being in tune with him and still allowing him his autonomy.  Especially at this early stage of the game, there really isn't much he needs from me besides love and support.

Sometimes I think that by trying to be organized and prepared, I'm getting in his space and making him feel uncomfortable.  I came from a very scattered childhood, and I have a real need to be in control of things to feel safe, so I tend to try to anticipate all the possibilities and prepare for everything.  The fear and the emotion involved in loving someone who has health challenges drives a need to make everything as perfect as you can so that you can deal with what's coming.  I recognize that even as I sometimes get caught up in it.  Where is the balance between taking pleasure in the fun of house-hunting for a new home with your best friend, and making sure that you're looking at walk in showers, easy access bathrooms, and wide doorways?  It's easy to get lost in that, and even easier to make your partner feel uncomfortable.  I struggle with it every day.  I can't just put it away as easily as Ben can.  Then again, he's had a lot longer time to internalize the reality and come to terms with how he wants to live with it. 

Q:  Did you do any research on PD, and if so, what resources did you use?
Michelle:  I did a lot of research, primarily online and through books.  When we decided to join our lives together, this disease became mine too, and I've never been one to sit idly by taking things for granted.  I needed to know what we were in for, and I wanted to know what he was experiencing.

I did spend some time talking to my primary care doctor about it.  I had the nuts and bolts by then, but what I really wanted to know was how to know that I wasn't asking too much of Ben, given his energy levels, etc. I tried to figure out for myself what our 'norm' was going to look like, so that we could adjust our lives accordingly.  I also wanted to be prepared for the future, with whatever complications might come along.  I'm a long-range planner type of person.  I still do a lot of research, stay active with the community, and try to keep my finger on the pulse of what's new in the PD treatment universe.

Q:  Ben, did you/do you have any fears or insecurities in your relationship as a result of having PD?  If so, what are they?
Ben:  There are things that I can't do at certain times and I am still concerned that it isn't fair for Michelle to have so many restrictions on her life because of my limitations.
Michelle:  Just to interject here for a moment.  I don't feel like our life has any more restrictions due to his health issues than it has with my own.  I keep us plenty tied down some days when I don't feel up to snuff, so comparing apples to apples, I feel we come out pretty even.  I am very happy and gratified with our life!

Q:  Can you be more specific about what restrictions are on Michelle's life right now?
Ben:  "Honey, I need to go to bed and its 8:45."  "No, we aren't going to go for a day hike to the top of Mt. Rainier."  "No, we're not going to do the 5K walk."  The restrictions of energy and ability have modified our relationship.  I can't walk long distances.  That's a restriction.  When I'm tired, I have to go to bed.  That's a restriction.  I haven't felt many restrictions with the kids, other that that there have been things that I have asked them to do because I was too tired.  I don't think it's really affected my relationship with them, and I don't believe that my lack of energy has affected my relationship with Michelle.

Q:  How do the two of you work through the fears and all the unknowns that go along with this disease?
Ben:  Michelle is very supportive and makes sure that we work around problems.  She spends more time researching PD than I do.  I feel like I have enough to do with making it through each day without spending time on the computer following up this weeks headlines.
Michelle:  We communicate - communicate - communicate.  We found out right off the bat that the lack of it was what hurt us the most.  The other partner can do plenty to fill in the blanks with misunderstandings if one of you isn't talking, so it's important to talk about the serious stuff.  Don't leave the other person guessing!

We're also both engineers, so we tackle our problems like any other problem:  very linear, towards a solution.

Michelle and Ben have both done a wonderful job of letting us peak inside their world, but it's not over yet!  Next Saturday we will have more of this remarkable interview.  Come back for Part III, the final interview, and find out what they have to say about Obama-care, celebrities, and so much more!