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!

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