It’s All Relative

I seem to get my most interesting thoughts when I am on my way home from the gym, probably because I am still amped from the caffeine I ingested before I left the house at 4:45 am ….I haven’t done a post for a couple of weeks as family life and ups and downs have me running around like a chicken with my head cut off. So, here goes….


I have this new gym.  It’s quite a bit different from my old gym.  At my old gym, we focused primarily on a mix of strength and conditioning, using a lot of old-school weightlifting, body-weight exercises like push-ups and pull-ups, kettle-bells, etc.  I loved my old gym.  Sadly, Andy has gone back to North Carolina and left me to navigate the wilderness of the Colorado Springs fitness scene by myself.  It was not an easy task, and there were a couple of months of trying every gym in town and every possible type of exercise. 

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Tami Onstad Comment
A Season of Change

Ecclesiastes 3:1-8

To everything, there is a season,
and a time to every purpose under the heaven:
A time to be born, a time to die;
a time to plant, and a time to pluck up that which is planted;
A time to kill, and a time to heal;
a time to break down, and a time to build up;
A time to weep, and a time to laugh;


This has always been one of my favorite songs, as I was introduced to it first by the Byrd’s (rather than at church) as most of you probably were also.   It’s always a reminder to me that there IS a time for everything and although you might be down today, tomorrow you could be right back on top of the perfect-day curve.  

There have been fewer blog posts the past couple of weeks as Mo and I are getting past the chaos of the first few weeks of official diagnosis.  As with everything else I worry about not ‘keeping up’ and disappointing or losing altogether the people who have started this journey with us.  However, I have to remind myself again that we are now in a marathon and not a sprint and there will be periods of lull.  

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Tami Onstad Comment
Tip-toeing Through the PD Tulips (or Running, or Biking…)

My last post was something of a downer, so hopefully this one will be better….

Mo and I attended a Vitality walk for Parkinson’s on Sunday with a team organized by local PT Emily Moncheski.  We attended the walk this year with a booth for the Unsteady Hand (and I say booth lightly – we were the only booth, and we were set up on a picnic table, lol).  We are incredible grateful to Emily for inviting us to set up and speak to people about what we are doing.  I think this was the first year that there was a Vitality team walking in Colorado Springs, and I can see this becoming a HUGE annual event and fundraiser.  It was much colder than expected, but there was a great turnout for the walk and we got the chance to speak to several people about The Unsteady Hand and we even had a few people sit down and play with pastels and make some art!  (If you are interested in learning about Mo’s newest adventure, hop over to www.theunsteadyhand.com)

I was incredibly inspired by all the people with Parkinson’s who were out in force yesterday walking around the lake.  I was especially motivated by an older gentleman who came back to the pavilion where his family was waiting (after he did a couple of 1.25 mile laps), and told them he wanted to do another lap! 

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Falling Up    

Warning, this has been an internally stressful week and this is not a happy post…. Read at your peril, lol…
I have been a voracious reader pretty much since birth.   I am one of Stephen King’s biggest fans, but I recently discovered someone who may knock him off my top spot.  I recently discovered Joe Hill and I am HOOKED.  If you like Stephen King or just like horror, in general, this may be your new go-to guy.
I’ve read two or three of his full-length books, and I am now partway into ‘20th Century Ghosts’, which is a collection of short stories with a horror leaning.  My favorite in this collection so far is Pop Art, which is a tale about a guy whose best friend is inflatable.  Now, Joe Hill has a way of writing about fantastical things in a way that makes them seem like they are almost completely normal.  No, this is not a story about an inflatable doll (and all the potential jokes that are going through your head right now). This is about a guy and his best friend who has an affliction like you might see in normal life with a kid who has MS or Autism or ADHD.  Except for this particular kids, affliction is that he just happens to be made of plastic and full of air.

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Boxing Gloves and Paint Brushes

So where to begin, honestly, I have no idea. I guess it starts six weeks ago with my diagnosis of Parkinson's disease. It hit me like a load of bricks. Well, actually, it didn’t. I wasn’t surprised at all. It wasn’t a shock, totally expected. So what to do with the diagnosis then… lay back, get sick, rollover… NAH, I was energized. Within two weeks of my diagnosis, I had attended four support groups, joined seven Facebook PD groups, started a blog with my wife(that turned into a full-blown website) and bought a treadmill. If I’m going down, I’m going down “all in” I figured.

The engagement I have on Facebook is mostly with people who are worse off than me, typically a lot worse. And among those peeps, there’s a lot of chatter about rocksteady boxing. I looked up rocksteady boxing in Colorado Springs and found… Two gyms, both over 70 miles away. That does me no good. What is a guy to do? I’ll tell you, you start your own gym. Backtrack two weeks to a support group where I Met Emily the PT. Emily has big plans for newly diagnosed for group wanted to meet to discuss. I have big plans for a new gym.  So, we get together and chat. During our discussion over coffee, Emily informed me there are multiple boxing classes, and big and loud classes, and power classes, and delay the disease classes, and cycling glasses, soon to be water aerobics classes, you get the picture. On top of that, they’re all free paid for by the Parkinson’s Association of the Rockies and free for participants. Rocksteady boxing gym idea down the toilet. But Emily says, art, what we really need is art for our PD community.

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Overpacking (or as subtitled by Mo "A Stellar Wife")

I used to travel for work a LOT.  Back before my son was born I was a consultant for a company that had me on the road at least one full week a month.  Some jobs I would stay onsite for weeks and only come home for weekends.  I don’t travel as much now, but packing has gotten harder.  The older I get, the harder it is to leave home and the more of my home life I end up wanting to take with me.  Of course, you can always buy what you need if you forget it, but many of the things I use and love are things you can’t go to Walmart or Target and replace. (That is a whole other post, lol).   As a result, I am a classic over packer.

Every what-if scenario gets consideration.  It’s springtime and sunny so short sleeves for sure except that I always get cold and it might rain so long sleeves and maybe we will go somewhere nice for dinner but I’m not sure if it will be really nice or semi-casual, so I need several choices for dress up.  Don’t even get me started on the pants and shoes to match these choices, or the pile of workout clothes that still need to be tucked in there somewhere…. This last trip also included all my rug-hooking clobber, so this time I actually needed a second suitcase to cram it all in. 

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From the Inside

My thoughts lately have all been relationship-focused.  With the royal wedding front and center this last week it was interesting to read everything that was in the news, and I began thinking a lot about the outside of a relationship that everyone sees, vs what is really going on inside of things.  It would be interesting to be a fly on the wall, but however fairy-tale that relationship looks I bet you they still argue over who left the cap off the toothpaste.

I had a fairly bad moment this week.  It was a bad week in general - stress in my house, being sick for a few days and just generally feeling like poo.  I dragged myself to my haircut appointment in Denver on Saturday, because I knew if I missed it I would not only screw up Nicole’s Saturday but I would not be able to get back into the schedule until July and I was overdue for a cut already. 

Nicole is the most chipper, upbeat, positive person I know.  Her first question to me is always, ‘what’s good?’

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Tami OnstadComment
The Physics of Health and Families

This sounds like the start of a long, boring research paper, doesn’t it?  Instead it is the start of a discussion that most of us don’t want to have.  We would almost universally rather read a twenty page, single-spaced, double-sided paper on physics instead of talking to our families about end of life care and arrangements.

Newton’s First Law - Every object moves in a straight line unless acted upon by a force.   This is true for our lives as well.  We will trundle along, not thinking much (if at all) about what the later years of our life will look like.  For most, I think we just hope that decent health will continue until we reach an advanced age, and then we will quietly and peacefully pass in our sleep.  No intervention needed.  Unfortunately for most of us, the straight line begins to zig-zag at some point.

I am currently pondering multiple family situations and end of life care.  My grandmother, who is 89, has not been in great health the last few years. 

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Mo OnstadComment
It’s Not All About Me (Really!)

Ok, I started out this morning writing a nice, heartfelt post about letting go of the things that don’t serve us (thank you Briana for posing this question to us in yoga this morning).  Somewhere in the midst of all the sticky-sweet loftiness I lost track of what I was really trying to say.  As I told Mo earlier, somewhere my words took a wrong turn and got stuck in the mud with no GPS.  I think the idea was that there is stress, stress, stress, stress, and yes, a little more stress.  And today that stress is NOT serving me.  It’s giving me nothing and, so I am giving it nothing in return.  TODAY I am not thinking about hail damage or puppy house training (or lack of) or the metric ton of storm s*it I am going to have to clean off my deck and patio before it looks like a normal yard again.

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Tami OnstadComment
"Badass Treadmill"

So my dear wife bought me a new toy. A NordicTrack “1750 bad ass treadmill”, really, that’s what it says on the side. This thing is a beast. Basically, it is desktop computer with a spinning tread. It’s pretty amazing. The problem being, I have some thoughts on exercise. Uh, exercise sucks. I think it’s safe to say I haven’t done anything that could be considered exercise for at least the past seven years. A stint or two at a gym or two that might have lasted three weeks tops. That would be the extent of it. I don’t “do exercise.” Back in the day, and were talking 30 years ago, I was quite athletic: biking, scaling Mountains, climbing rocks… Generally fit and rather buff. Those days are long gone as is my will to exercise. Enter Parkinson’s. Everyone says exercise, exercise,

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Cherries On Your Sundae

I'm still in recovery mode from my vacay/staycay in St. Louis. I was way out of my normal eating mode, eating every snack mom had in the house, plus eating the Gooey Butter Cake that I cannot get anywhere except St. Louis. If you have never had it, fly immediately to St. Louis and get a piece. Maybe have another before you fly home. Maybe grab an extra piece for the plane ride.  Did I mention I also took home a pan of walnut squares in my carry-on? Thanks mom, they were gone within 24 hours of arriving home. :)

So here I sit, bloated and uncomfortable, trying to get back into my routine of work and exercise and being an annoying slightly-helicopter-end-of-school-year-parent to my seventeen year old son, and of course being a care partner. My thoughts today and the last few days have been about relationships, especially the ones that have been established and moving along for a long time before PD became part of the vocabulary. 

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It's Quiet... Too Quiet...

I'm back from my little vacation that was more like a staycation, even though I was in a different city.  It was nice to get out of my house for a little while and escape this pit that all of us have probably experienced around the time of diagnosis – the hole you fell into where it was ALL PD, ALL THE TIME.  It’s all you think about and worry about and talked about and stress about and it becomes an inescapable thing.  Lucky me, I got to climb out of the pit for a little while and breathe some non-PD air.  Unfortunately, I left Mo in the pit for a little while.  There is definitely some guilt that goes along with the notion that you the care partner can exit the building, while your Parkie is stuck.  However, I think we have to let the guilt go if we can, because those moments of ‘freedom’ might be few and far between, and we have to accept the respite from stress when we can get it.  And let’s face it, your Parkie may be grateful for the quiet and break from the constant chatter about PD as well.  It might be nice not to be reminded about Parkinson’s every minute of the day.  Have you taken your pills?  How’s your tremor today?  Are you having trouble swallowing?  Is that dosage of C/L still working?  You need to exercise.  When’s your next neuro appointment?  So, maybe a break for Mo, too.

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11 things I learned... 5.5.18

Spent the day today with 200 of my closest friends at a Parkinson’s symposium here in Colorado Springs. Guest speakers- neurologists, PTs, OT’s, STs and the like, vendors and door prizes! (I didn’t win anything)

Things I learned today:

1.       Now that I’m on carbidopa-levodopa I can fill out a name tag without my wife. It’s been a good while since I’ve been able to fill out a name tag that anyone else could read.

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The Things We Keep

  I am visiting my parents in my hometown this week, in a little tiny town most people have never heard of.  I’ve spent my life just telling people I am from St. Louis, although it is a 45-minute drive away.  The past few days have been spent driving around to places that look only partly familiar to me.  I grew up here in the 70’s and 80’s when there wasn’t much of anything.  No McDonalds, no Starbucks, lots of not-much.  There is now an overlay of growth over everything.  An area that was once just a huge wooded hill across from the parking lot where I had my summer job before college was flattened and turned into a giant complex of shopping centers, restaurants, and movie theaters.

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Grief... short and sweet

Greetings peeps. Have a BS in psychology which makes me totally unqualified to discuss the following subject, but here I go anyway. Thoughts today are swirling around grief …in terms of Kubler Ross’ definition. She described five stages of grief: denial, anger, bargaining, depression, and acceptance. When this theory first came out it was presumed one traveled through these stages in order, denial to acceptance. The theory has evolved over the years and now it is assumed that you bop back and forth between all the stages over time.

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Testing... one, two, three...

Feeling a tad guilt ridden; mostly because my wife is being prolific and I’m not. So I thought I would do a quick blog about a new toy I have. I purchased Dragon NaturallySpeaking and headset. My trimmer was so bad I was unable to type on my phone send texts or emails, so I started speaking to text on my phone. It works swimmingly. I thought why not on my computer as well, specifically write blog. Typing is not my skill set nor will it ever be. But talking, that I can do. At this very moment I’m using Dragon speak my new headset out of the box. Hence the typos I’m sure you’ve noticed. You wanted to give you an idea what you can expect on day one with your new toy.

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Moping and Coping

The weather here is typical for April in Colorado.  Gorgeous and sunny one day, snowing and freezing and gray the next.  After sixteen years here I should be used to the volatility, but it still catches me off guard and throws me off my game...

I have a fairly serious case of Seasonal Affective Disorder, and lack of sunlight does bad things to my state of mind in the fall and winter, probably more so in the springtime when I am not as diligent about my SAD management.  A few sunny days and I stop thinking I need my routine.  Adding PD stress to the mix is a recipe for disaster.

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No 'Stress 101' Here - This is the Graduate Class

The last year of my life has passed in a blur.  Most of the year has been a whirl of doctor's appointments, speculations, and fear about what might or might not be happening with Mo’s health.  I know many of you have experienced the same things.  Unfortunately, on top of this we all still have to deal with ‘regular’ life.  I found out this past year that one of my oldest friends had passed away, in one of those typical situations where you’ve lost touch for a while, but you are certain that you will eventually pick it back up where you left it last.  Always time for that, right?  Then I learned of another friend that I lost.  That makes three of my best friends from high school, all gone by the age of 40.  My grief has been somewhat buried, but I am still in the stage of mourning all of them and wondering why I am still here when they are gone.    On top of the ‘on top of’, my 89 year old grandmother has been in the hospital this week in Seattle.  It’s difficult not knowing exactly what’s happening, and not being there with her is hard.

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This ain't no picnic...

So, the call for "personal definitions" went swimmingly!  Thank you to everyone... Rocky especially as I used his for the static page. That said, I wanted all of you to have your voice so I compiled everyone else's in this first of many guest posts.  Being so new in my Dx, it was awe inspiring, touching and terrifying  to read these. I thank you again in in for your openness and candor. 

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Mo OnstadComment
I'm No Superman

The inspiration to write does not come easily to me. Participating in a blog with my wife is almost ironic on some levels; not a great sharer, not a great writer, and my follow through on such things leaves something to be desired. Figuring out what to write about, also, is a challenge, one that I'm not sure I will always be up to. My guess is my wife will post more than I will. My guess is I will respond to comments, feedback (and our soon to come forum) and do admin tasks more than she will. Like all things, this will be a balancing act and delegation of duties, not unlike our marriage ; )

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