Monday, February 10, 2014

Paul's Rescue: One Year Later

Copyright 2014 by Paul and Lori-Ann Willey

* If you have not read the previous blogs about the rescue itself, the links are here:

The Rescue

Paul and I wrote our year-end summaries from two different angles.  Both are rather lengthy, but we had a full year to cover, too.  Some things may overlap briefly.  Though we spent the past 365 days together, we experienced those days very differently.  I guess you will just have to read each to get a larger picture.  

The Year End Summaries

Blogger does not do bookmarks, I guess, so keep scrolling down to find our year end summaries.

Meeting Up With The Rescue Team

Meet Heidi and Mark Evers.

Paul sleds out without a rescue team!

See that large plastic bag?  Inside holds the comforter that Mark and Heidi used to wrap around Paul to help keep him warm in the rescue sled.  One full year the Evers kept that comforter for us, washing it twice.  We hoped to meet up with this during the summer months, but it was not possible.  However, they held onto it for us and returned it the day we met them in town to treat them for a THANK YOU meal.

This "Wood Spirit" was carved by Mark himself.  He presented it to us at the diner table a few days ago.  He told us, "...needs a place to live." (the spirit)  We proudly have it at camp.

Copyright 2014 by Paul Willey

Twelve Months ago today began the longest, shortest, foggiest, hardest, confusing period of time in my life with some of the worst and best moments in my health care.   

It was Sunday, February 10, 2013 and I was just rescued via Millinocket Ambulance Rescue Sled with Heidi and Mark Evers assisting.   They weren't even on duty, or on call when the call came in, but by the sounds of the call, they realized that meds may be needed on scene and they were qualified to do so.  So, they volunteered to take the call.   The care at the ER was just as excellent, I have no Idea how long I was there, but I was mobile enough when I left for them to get me into the truck and we went to our residence in Palmyra.

Bob & Hope MacDonald picked up our snowmobile trailer from the snowmobile club and brought it back to their place for safekeeping.  

Once I was home and sought follow-up care is when the anger over health care started.   Naturally, being an MS patient, I was used to having IV steroids as I was given in the ER.  The reduction in inflammation was instrumental in getting me at least ambulatory with assistance.   I've had countless treatments over the years always on my calling, when I felt "I" needed them, verses a steady dose that many MS patients receive.  I refused that kind of care.    Steroids, like many other meds, are compensated for by your body, so the more routinely you take them, the more and more you need them, and the more damage is done.   It had been two years since my last treatment.  

I called the VA the day after my rescue and requested to be seen by the lead Dr. of the Spinal Cord Injury Clinic on Tuesday.   Which I did.   During that time, he refused to give me the dosage of IV steroids that are normally given to treat an MS flare!    We were furious to say the least.   Despite the pain and immobility I had, all he did was max out my doses of medications leaving me in a stupor, and doing absolutely nothing to relieve my symptoms.   I was still pretty much bed ridden, needing constant help from Lori-Ann and when the grand kids were over I remember hollering out in pain, swearing involuntarily. Something I never did in front of them.    

Since long ago, when I have bouts of pain, I masked them the best I could but of course Lori-Ann or the kids pick up on my clues.   Long ago if we were in front of other people, they would ask if I was OK...  I asked them not to ask, because I didn't want that attention.  I would just say, "I'm fine",  regardless.   Only other occasion I remember frequently yelling in pain, was while playing real golf.  The pain was real, but thinking back, maybe it got me a sympathy stroke or two! haha.    

After a week of being in a stupor, with minimal if any improvement, I did something I never did before.  I went outside the VA system for MS treatment.    I saw my civilian doctor and she gave me Steroids right in her office without hesitation and I started getting relief that I needed.   
Without a doubt, If it wasn't for the extra meds the ER sent me home with, I would've been in the same shoes again, .   My civilian Doc also gave me a neurologist referral.

Amazingly just 3 weeks after being rescued, I saw a neurologist.    I don't want to discuss his name on here, nor get into details, but I will just say he was by far the most thorough doctor.  I ever had.  He'd order test on a Friday, call me up on Monday morning, cancel that set of test and say... "I've been thinking and studying about your symptoms/history over the weekend...." and then order a different battery of test.   He wasn’t afraid to refer me to a different neurologist either for a second opinion, one who specialized in movement disorders. 

So between steroid treatments and adjustments of my medications/new medications just 5 weeks after my rescue we make a road trip up to Millinocket to get our snowmobile trailer while graciously thanking “Bob Hope”.   Lori-Ann helped me get on my sled, and we make a long slow journey into camp to tie up a few loose ends before we go on our road trip.   The trip is exhausting and we have to spend the night at a hotel in Millinocket before we go home the next day.   

Just 3 days later, we head out on a 50 day, 9,124-mile road trip around the country.   Our main objective was to see our son Joshua in Hollywood, but we stopped to see many family and friends along the way, as well as many of the tourist attractions of the west.   Places we figured we'd never get a chance to see.   

We left March 21.   We knew we'd have to take our time as Lori-Ann was the only driver and sitting up for long was exhausting for me.   You can see all the pictures and read some of our adventures here.

The closer the trip came to a close, the more tired we both grew.  Lori-Ann had to do all the luggage duty, as well as taking care of all my needs, and driving, so it was just as exhausting on her.   

My most memorable story of the trip is summed up in this post.   This is a brief summary and doesn't include some of the thoughts running through my head like, "How do I get out of this situation, please don't let that sound be what I think it is, etc, etc......"

"... we are at a restaurant because we were way too early to check into our hotel room. It was another place with a hard to maneuver handicapped stall, and just like every other handicapped stall I've been too, I have to fight to spin around so I can grab the door and shut it.

Well, this time while doing so, the back wheels of my wheel chair caught the front edge of the toilet, spun the toilet so the toilet bolts broke off the floor, and evidently when that happened the back edge of the toilet tank hit the wall, and since it isn't flexible it split in half right down the middle. It looked like someone took a splitting maul to the tank and opened it perfectly in half. Luckily, they have a good drain in the bathroom, because needless to say the water kept running....

Then I had to tell the nearest waitress, "I broke the toilet". She quoted me, "You broke the toilet"?... I could just imagine the thoughts racing through her head! LOL Then I told her I was spinning around with my wheel chair to shut the door and I caught it.  Before we left, one of the staff came up to me and made sure I was OK, and told me not to worry about it. I felt bad, but I every time I would start to tell Lori-Ann what happened, I would burst out laughing. I finally downloaded a sketchpad for my droid do I could show her what the tank looked like. I even had to stop myself my laughing before I came out of the bathroom to tell the waitress I broke the toilet."   (Memory fails me, but it was probably 15-30 minutes before I finally thought of downloading the sketchpad... haha)

So that gives you a clue as to how tired we were.   Just before that, I parked my wheel chair on Lori-Ann's foot in much the same way I did AhChoo's tail the other day.   Thankfully, both made a speedy recovery, but unfortunately for me, the cat treats didn't work at letting Lori-Ann forget her pain, especially since I'm a repeat offender.

Three days after our return to Palmyra, on May 12, we considered our road trip "OFFICIALLY" over (even thought we didn't count it in the travel days) because we returned to camp.  

I'd spend 99+ percent of time of the previous 91 days either in bed or in my wheel chair.    I had a new wheelchair from the VA, so I now had a rugged chair for outdoor use, and a lighter wheelchair for indoor use, but still had no real ramp system at camp.

One of the things that really clued me in at this time as to how bad things went south for me on a cognitive level was my ability to focus on things once it came time to get the camp ready for summer use.  It's a problem I always had,  but usually once I felt a period of alertness coming on I could focus enough to work on a task for bit.   However, this time.... I found myself zoning out after just 2-15 minutes maximum before my day or DAYS were finished.  I pushed though even longer just so I could accomplish something, but it made my time relaxation time even less enjoyable.

A perfect example for me was the lower unit in our boat needed to be replaced and the motor needed to be serviced.   We had the replacement lower unit.  EASY JOB... Ooops... missing one part.    Normally, I would've told Lori-Ann we are going for a ride to get the part, but not this time anyway, it was  3-4 hours of work... including the drive for the extra part.    I would just get lost, not know what to do next step despite having the manual, and/or just have to abandon everything and go to bed.   So, the actual 3-4 hours of working turned into 5 days.    

When we finally finished the boat.  Lori-Ann dropped me off at the landing on the first nice day. Just driving the boat from the landing to the camp, landed me in bed.   I was really worried about even having a summer at camp then.

In the mean time, we had more Drs.. appointments, more test, etc, etc....  Before we knew it, the end of June was here.   We knew if we had any chance of staying at the camp it had to be 100 percent accessible.  So, we put in the necessary paperwork and had the work done.     BUT, I also told Lori-Ann, and she NEVER questioned me for one second, (despite as demanding as it was to take care of and worry about me)  "I have my meds, and I don't want to see any more doctors or have any more test during the summer".  We had work to be done, we wanted our granddaughters here.  I want to TRY and enjoy that time.

As much as I tried, I never did enjoy those times with them.  They came.  I put on my best face, but I spent most of my time zoned out or in bed, it seemed.  I did my usual role of cooking the boat meals.   Which is what I REFUSED to give up, but it sucked everything out of me.   I love cooking while I watch everyone else play on the beaches, or driving the boat around the lake for scenic tours in hopes of making new discoveries for them.   AND, I would do it all over again. That is what Grampy is suppose to do.   I want them to remember me like that as long as possible.    But, I had silent tears of never really getting to enjoy the time with Autumn and Ellie. They were here, but they weren't.   It's so hard to describe.    My meds essentially were the same from a year ago, so medication wasn't the problem.   My health was.

We only went fishing 3 times during the summer.   I never really enjoyed any of those excursions either.

We often went for a week or two at a time without a ride even.  Relatively few boat meals.   We only made one of our trade mark "HON-NEY"  videos during the year.   The nights sleeping on the boat were far fewer and far more uncomfortable than in the past.   ALTHOUGH, I was much more comfortable on the boat than I was earlier in the year.    I enjoyed taking Lori-Ann out so she could get her photo or/and snorkeling  opportunities though.  That meant a lot to me.  I could rest on the boat, cooking for the two of us was relatively easy, and she helped quite a bit still.   

My plans on not seeing a doctor all summer turned into not seeing him through September, or October when I finally called for an appointment in November.  He said he understood perfectly, and there was no guilt trip of any kind. 

Then he said, ‘I think I see what's going on here.   I could send you to some more doctors for some more testing, and we MAY or MAY not be able to name one or more of your problems...   But I don't think we have to put you through that.   There are three medications I would like you to try, one at a time, they are all going to be for "Off label use".    These won't be a cure, but they should help your symptoms if I'm correct.    So basically between genetic and autoimmune disorders your neurons are having problems making the right chemical transfers in your brain and in your neuromuscular system.’   

I've already forgotten the first medication he tried, but even at the lowest dose, I didn't notice a brain fog improvement... BUT I noticed rather a rather quick improvement in pain and muscle spasms.    The improvement was way beyond expectations.  However, since it was also used to treat altitude sickness, it was a diuretic, caused me many sinus problems and other issues, so after less than a month I had to abandon it.

The next medication is primarily an anti-seizure/migraine medication.   He said I should see almost immediate results if it works.   And  WOW, did I ever.   However, it worked JUST the opposite of the first medication.   It did not improve my pain levels, or muscle spasms, but, it took away my brain fog, I found I could focus, I could push through pain without it shutting down from the pain.   I'm not what I was even a few years ago,  but I can function for hours at times before I start to "zone".  Zoning is not as sudden, IF I pay attention to it.   I don't want to sometimes, and try to finish things.    I still need "days" off, but I just had to take 10 months off from my life.      

I've done some unintentional experimenting by not taking my new meds a few days earlier this year and I found I was almost instantly back in the same confused state as before.  So that eliminated the placebo effect.  I've also discovered that I STILL rely on the meds I've always had as well as two new ones.   If I don't take them, along with the new meds, I found a determined brain can only push a body so far.   In reality, I like to think my body has years back, but from the days of ice fishing I can tell that the combination of my old meds, a med I started a year ago, and my newest med have my body back to where it was in the few weeks before I was rescued.   So I still have to be smart, and wise.  Hopefully more choices are ahead of me when I see my doctor in the future.

I also want to note, that in my first blog of, I noted my cognitive function test were all 100 percent up through 2013.  I was tested again in late November 2013, and for the first time ever, I did not score 100 percent.  The words the therapist said in Januray 2013 of “Even though you are noticing changes, you are still way ahead of the rest of us" were no longer true.   

Even on Facebook, my postings may have seemed "normal", but many of my post took 20-30 minutes on a daily basis, and I gave up on a number of my post.   So while I could communicate with written words easier, it took a considerable amount of time for me to do so.  Even though I could communicate what I knew about subject matter, it took so long time for me to dig it out.   I still caught several after the fact mistakes that I would correct.   Except for this paragraph and the next, I wrote this entire blog in one three hour sitting.  If I would've tried last year, it would've taken Months.   

UNTIL VERY recently things didn't seem to be turning around in the cognitive area.   I'm always repeating things, even in my Facebook posts I'm constantly finding that I repeat sentences or phrases.   That seems to be improving quite a bit over the last 2-3 weeks and I've even noticed my math skills are warming back up.   I still can't even guesstimate percentages and have to use a calculator, but I know how to do the math without using a formula.    While I still can't multiply triple digit numbers in my head, on February 7th for the first time in ages I added 3 triple digit numbers in my head. 

Then Today, February 9th, for the Dam Weather Page, I added 8 numbers in my head, 7 of which were triple digit, and then divided by 8.   I was off by .04, that's acceptable in my book!!  :-).    So while my body is lacking, my brain is still improving in function.   That's what was missing in my quality of life around here.   My body still needs many hours of rest, but at least if I manage my time correctly I can enjoy my awake time.  It's still a delicate balancing act, but I gained the upper hand again.   

As a side note, remember that VA doctor I mentioned WAY back at the beginning that refused me treatment?   He was "transferred" elsewhere.   I won't get into what we heard through the "rumor mill".   As the Spinal Cord Injury Clinic saw its patient numbers dropping dramatically over the few years he was there.  He disappeared.   Draw your own conclusions.   I like the conclusion we drew.

My unreasonable guilt of this past year was not having Mark and Heidi Evers at our camp as I promised.   As I know they understand, if I couldn't even muster up the energy for the grand kids, I couldn't find myself able to do that either.   We talked about planning lunches, but even that seemed next to impossible for me. 

Thankfully, they graciously allowed us to treat them to lunch this past week as a small token of appreciation.   They also gave us a "Wood Spirit" carved by Mark that needed a "place to live".    He will be MOST welcomed here in our home.    

I would just like to close with a post I put on Dam Camp's Facebook Wall on Christmas Day, 2013.

"Even though we didn't say so publicly, we knew in our hearts that things didn't look good for us being able to stay here this winter up until a month ago. We stayed here this year, but everything fell on Lori-Ann's shoulder's, to include worrying about me. BUT, a new Neurologist I found last March wouldn't give up, and he found the right class of meds that is helping me where I have the ability to fight through things again. Not a cure, but I am taking steps back towards my life before the Rescue Sled. 

The best gift I have is seeing Lori-Ann able to relax without worrying about my every move, or what will happen if she goes outside. 

The most ironic thing is despite this statement, Lori-Ann will confess that to her; the most frustrating thing this past year was that she couldn't give me a swift kick in the ass to get me doing something. She just could not understand why, and understandingly so. I always relied on her when I needed it as well. I tried so hard to make them (the kicks in the ass) work. BUT, now with the new meds; she keeps telling me... 'STOP.. You're going to over doing it.. you need to rest'. She can see I'm tired, but my brain is still going, and pulling, so she is trying to protect me.

I wish I could tag Mark & Heidi in this Post, but it all started with them, literally pulling me in a new direction. 

Merry Christmas Everyone!"

Copyright 2014 by Lori-Ann Willey

Edited by Patricia Tobin

A very special thanks to our friend Patricia  who helped me edit this piece.

It has been a year since Paul’s rescue last February 10th, and it is impossible to write about everything because so much of it was a blur for me, too.  What was not a blur were my struggles emotionally while watching my husband becoming more and more withdrawn as time went on.  I will try to explain how it affected me, and how it all affected our day-to-day living.

In the days and weeks after Paul’s rescue, I stayed by his side as much as I could, however, he slept nearly all the time.  I did everything for him to include cathetering, washing him, helping him roll over, to sit, to stand, and of course, needed to continue giving his allergy shots, too.  I catered to him.  

I hope he will get into the fiasco we had to go through with his VA doctor that was put in charge of the VA spinal cord clinic.  All he knew how to do was max Paul out on so  many pain meds and muscle relaxers that all Paul did was sleep, and was unable to form words or sentences for weeks on end.  I was missing my husband and did not know how I could make him better.   I felt helpless.  We were both very frustrated and emotional.  Doping him up was not a quality of life we were going to accept.  How long could I care for him as he was?  I would need help from professionals if that is what his life had become at that point.

As I listened to Paul try to talk with that doctor on the phone one day, I could tell by Paul’s already struggle to communicate, that the doctor was set in his ways and he was not listening to Paul at all.  I sat quiet, but as the conversation continued, I grew more and more upset.  Angry even.  I motioned for Paul to hand me the phone.  I spoke my concerns to the doctor, and then I listened to what he had to say.  I was not happy with the man, and I had him on the phone for about 20 minutes cussing him up one side and down the other.   I was frustrated, angry, and felt helpless.  I told him that I wanted it in Paul’s records that neither Paul nor I was satisfied with his treatment.  Surely, there was something the man could do for Paul except dope him up into nonexistence, but the doctor was set in his ways and would not budge in thought and my concerns went unheard and I made sure to let him know that several times.  That doctor had a history of NOT listening to his patients!  I was not going to give up that easy!

Keeping in contact with our kids, family members, and close friends, Josh (our son), feeling helpless as well, was clear across the country.  Hearing our struggles to communicate with a doctor whom would not listen to our concerns, he called the doctor himself.  Of course, the doctor could not talk with him, so that frustrated Josh even more.

Finally, we decided to go through our civilian primary care doctor.   She could tell that Paul needed steroids, but in the office, there is only so much she could give him legally, but would give him a prescription of the same dose to take over the next few weeks.  She recommended he see a new neurologist in the area. 

We were so tired of doctors that we both dreaded the entire diagnosis process all over again!  We were so tired of starting from scratch just to have yet another new doctor come to the same unknown solution and to an unknown diagnosis as the others did in the past.  Paul was diagnosed 18 years earlier with MS and it took years to get that diagnosis, why would we want to start all those tests all over again?  What could be tested for that was not already tested? 

A couple of years earlier, some doctors had already suspected that he did not have MS after all, but would not test further to see exactly what he had, so they just treated the symptoms.  Because he did not have the lesions in the brain, spinal column, he did not meet the new criteria for any sort of MS treatments, though some treatments in the past worked.  Some didn’t, but some did!   Because of the new criteria, he was stuck in limbo and prescribed medicines for symptoms without a clear-cut diagnosis.  That is where some of the medical professions left him…”I don’t think you have MS, but that is what we’ll stick with”.  It was so frustrating!

Now, with the drastic decline of his un-named disability, we thought long and hard.  We knew that this new stage of his health, the steroids helped, but he was by far not back to where he was before the rescue.  Something was not right.  Something had to be done.  Someone had to help!  We were not satisfied that all testing was not done that could be done, but at the same time, we were tired of all the tests and doctors that came up with the same inconclusive answers, too.  At what point do we say enough is enough if the doctors had already said that years ago?

After his rescue, his memory was way off.  Time perception was way off, too. When he was able to talk, he reflected backwards a lot such as talking in the present tense, when “the other day” was a year or so before that.  Not naming his nouns, or giving me a topic, or excessively using pronouns in referencing several people, and not naming them initially got me frustrated, too.  He would start off talking mid sentence and I would not have a clue as to his topic, time frame, reference, or anything.  All this while his sentences either, stopped abruptly mid-sentence or trailed off to inaudible mumbling.  I tried so hard to be patient and so hard to try to fill in the blanks, but often times I could not no matter how hard I tried.  My life had become being unable to communicate with my own husband and that frustrated us both.

Cognitive abilities? Paul had very little to none for a long time.  He would try to talk and hold a conversation, but many who listened could not understand much of what he was saying.  Some played along and nodded their head.  Some gave the same responses themselves, or simply answered their own questions.  Some dominated the conversations leaving Paul little time to try to talk in fear of not understanding his responses.  Sometimes, people would just talk to me as if he was not even in the room.  In Paul’s mind, sometimes he was audible,  sometimes he was making sense, and sometimes he was holding a conversation…and sometimes he was right, but mostly not.  I tried to prod him to find the words he wanted to use, to help guide him, but all he could say in return was, “Honey, I’m trying”.  In addition, he was confused as to why I could not understand him, when to me, he was making little to no sense with his words.  Just because he knew in his mind (kinda) what he wanted to say, did not mean that I did.  It was a constant struggle.

A few weeks went by and he was to turn 50 years old on March 16th, and he wanted a birthday party.  Honestly, I could not see how that was to happen at all, and I had my hands way more than full trying to just keep up with daily living, tending to Paul and his needs, too, that I could not plan for the party even at our own business.  Instead, he contacted his niece, Sara who ran the business and told her to “have at it”.  Gave the date, approx. number of people and to run with it.  She did a great job.  The cook that is also our friend worked for us. She was given my permission to “run with it”, too, with whatever she wanted to cook and serve.  She tried to bounce ideas off me, but I could not think long enough to say yes or no, and instead encouraged her several times to just take it and run with it.  I trusted her judgment.  Honestly, I was not looking forward to the event myself.  What would happen if he could not attend last second?  How could he plan such a thing if he couldn’t even roll over in bed by himself?

With lots of meds and lots of rest in his body, he was able to attend and did rather well, too.  That was very nice to see.  The turnout was plentiful, too, so that was a big plus.  I mingled a lot, as others kept him busy by gabbing.  I had been his voice more often than not up until then, would answer questions for him, would restate his sentences for him,  clarify what he was trying to say, etc., but that night I needed a break, sad to say, I know, but I needed to step away and instead of being at his side every second.  I  kept checking back often, and he was always surrounded by friends and family, so he was well tended to.  If anyone caught on with his lack of abilities to communicate audibly, they didn’t let on.  Maybe there were enough  people in the room so that people just simply pieced words together and called it good.  Even as I type this, I asked him, “How many people attended your party, do you remember?”  His reply, “I don’t have a clue.  I was too out of it.”

Paul continued to insist that he also wanted to do a road trip from Maine to visit our son, Josh, in California and then back to Maine again.  “Are you kidding me?”  I shook my head in disbelief,  “No!  Honey, there is no way we can make that trip how you are!”  I figured it was some farfetched fantasy idea and there was no way he was thinking in realistic terms AT ALL.  I was not up for driving all that way, take care of Paul, and me, too.  How could I do that?  The thought was impossible for me to even begin to comprehend.  I would need help driving, a passenger that could tell me the vehicle I was passing or the lane I would be merging into was safe to do so, etc.  Then, to unload our luggage with each stop, too?  No way.  I was struggling as it was!  I wondered if he was even considering my “job” at all during the trip.  In hindsight, I can see that he needed to have determination, a mind-set, a goal or goals in place to help push himself through it all, and eventually, I did see that, but only after I was over the initial shock of such a trip!  Only then, did I support him.  However, I am shameful to say, I was a big skeptic!

Each day, Paul made a little more progress thanks to the oral dose of steroids on top of the in-office IV treatment he got.  Luckily, his doctor agreed to give him another dose for the trip.  That was the only way I agreed to consider the trip at all.  I was still not sleeping well even then, and I would wake up or stay awake to make sure he was still breathing and was still with me in life.  This was throughout the summer months, too.  Many of you remember my countless near sleepless nights.  I even had them during the road trip.  I became very protective, as I always am anyways, but even more so.  I am a protector and a nurturer by nature, but I think for others that is a great thing, but for me, it creates a lot of stress knowing that he will be in my care and far away from his doctor, too?

We took our time to get from Maine to California. Driving 4-6 hours each day was long enough for the both of us. My problematic back did great and I loved the heated seats.  I could drive about 2 ½ - 3 hours before I needed to stop and rest my back, so my driving days seemed to linger.  Days were long and tiring, and still had to check in and lug our luggage up to the hotel rooms, and having to find a place to eat each night made for very long days for us both, but we managed.  Sometimes, we would just eat something out of a vending machine and call it good.  Sometimes, we would only eat one meal a day due to fatigue more than anything.  If we were hungry, we would order take-out delivery.   Our stops in Indiana, were the only time we had home cooked meals, and boy were those rewarding!  REAL food never tasted so good!

The days were filled with new sights and sounds, new faces, and new attitudes along the way, and finally, 50 days later, we were home in Maine.  The past 50 days kept my mind busy, and that was good for me.  However, once back home, reality hit me fast and hard in the face.  It was spring, May, and my whole being wanted to be back at camp and continue our lives as we had in the past, however, things were not the same.  Paul still needed a lot of rest, and a LOT of care.  His days were spent mostly in bed.  When he got up, he spent time at his laptop.  He barely spoke, and when he did, his voice was still weak, and his sentences still broken up, and inaudible when tired, especially.  I spent more time asking him, “What?” than anything else, I think.  Everything he tried to say, resulted in me saying, “What?”  Sometimes, it was several attempts to complete a sentence before I understood what he was trying to say.  That frustrated us both.

At camp, his daily energy was spent reading and researching topics of question when he could, but his cognitive abilities were not nearly what they were before.  People on Facebook always went to him for clarification of things, and he would always comply.  He was a reliable source, but now, it fatigued him beyond words…literally.  Yet, still, he would spend his wake time researching for them, debating when he could, and when he was finished helping them, he was too tired to do much of anything else, to include conversing with me.  Though I missed my husband, and he was sitting here three feet from me, there was very little communication between us.  One day, he got up and went over to feed the cat, and that was a shocker to me.  When I say he did absolutely NOTHING, I do mean nothing, and feeding the cat a can of food was a huge undertaking for him.  He had the ability to do that daily task about once a week this past summer.  Although it was a menial task for me, it was huge for him.  Even so, just feeding the cat once a week was a great help.  Yes, just feeding the cat.  It is hard to explain how that little bit of relief was huge for me.

 I spent much of my time inside camp, only going out when he was napping.  I was afraid to leave his side for very long, so I stayed pretty  much in the camp yard only and checked on him often.  It was a good year to pick up gardening again!  I spent a lot of time making soil (collecting natural debris and composting them).  I spent a lot of time with the chipmunks, too.  They would follow me to my garden and linger around there with me while I worked in the soil.  I would sit down and they would be up in my lap.  They made me smile and feel more at ease about being outside.  They helped distract myself from worries.  When I was on the phone with our friend (mentioned below), I would always sit on a log that lined my garden.  Between those conversations and the chippies, I would actually enjoy a few laughs.

Paul was still laying down and sleeping much of the day, so when he was up and sitting in his wheelchair at least I was seeing him, and repeating that, “what?” several times per sentence.  It was good to see him trying to engage others and his brain, too, but at what expense?  It fatigued him to the point that there was nothing left and needed naptime, but at least he was social with his typing fingers.  That was great to see him trying to get back to his social being, but I longed for conversation still, and longed for a conversation that made sense and not end in frustration.  It was like trying to communicate with someone who spoke a different language and was in search for words to help describe their meaning.

I kept busy as I could, but my mind was full and screaming.  When he laid down one day, I decided that I needed to vent my frustration, to preoccupy myself, to do physical labor, so I decided to lug rocks, and the larger the better!  It took me weeks to build a couple rock fire pits, lugging rocks so heavy that I could barely lift them, never mind carrying them through the woods and to the fire pit area.  All this was taking a toll on me mentally and emotionally.  As I felt my body getting stronger from all the lifting of rocks, I pictured them as making me stronger emotionally, too.  I had to be stronger than I was, and I would try any trick to get me there.  All this meant so much to me to keep it from Paul.  He had a lot going on within himself to worry about me in any way.  I knew I had many friends out there that would understand that I needed an ear, and family members, too, but I just could not bring myself to talk with them.  Pride, fearing they would not understand, fearing that I would be called a dramatic again (referenced below) all held me back.

I was afraid to leave the camp yard in case Paul needed me, so I felt like I could not do my usual summer activities.  I almost lost him to illness back in the 90’s and I was so afraid I would lose him if his body turned on him yet again.  I snorkeled very little this past summer and walks with my camera rarely happened.  I stopped sketching, and painting, and writing, too for a while.  Other than building a large rock fire pit, I was afraid to resume my  normal activities, because I was so afraid I would get hurt and how would that work?  If I got hurt, I could not care for Paul as he needed me to.  We would both be up “Shit’s Creek” and in Maine we have no “creeks”! 

It was not until this fall when I finally admitted to Paul that I was stressed.  Slowly, I was allowing others to see that within me, too.  There were illnesses within the family on top of all that…stresses from every angle, too, it seems.  Alzheimer’s, cancers, and dementia, depression, “missing” family member, and other issues and I felt like the world came to me with their issues and how could I help take care of others if I was struggling to take care of Paul and myself, too?  Family came to us for help with various things and though we could not physically or emotionally, we found a way to help most of the time, if not all the time, but it was a huge strain on us.  I could not understand why they could not see our struggles with all this, but I guess we hid it well, put on a smile, made the best of every day that we could, because we knew the alternative.  Health issues are our life, but because we do not work, and live at our camp does not mean we are able to help everyone that comes knocking near and far.  As much as it killed us to do so, we had to start saying no, especially if we saw other avenues for them to explore. 

I went from being a somewhat passive person whom would go out of their way to help people, to the point of hoping that I was not called upon to do anything. I hated that about myself, because I am the type of person that would put myself in danger to help anyone and not think anything of it, but I could no longer volunteer myself.  That was frustrating.  I just wanted our life back before the rescue.  I wanted my husband to be able to hold a conversation again instead of me listening and when he was done talking, have no idea what he had said much of the time.  In public, he stumbled over his words greatly and he often confused people.  When he would look away, they would look at me, like “huh?”  In talking, he would mix up his nouns and call objects by a different name totally and that added to the confusion.  It was like his brain was wired in opposites.  Right was left, up was down, here was there, that was this, etc.  I learned QUICKLY that I could not depend upon him helping me drive by telling me the way was clear when there was a vehicle coming.  Go was stop, stop was go, clear was not so clear.  He would try to the help me with the stoplights, but would tell me to go when it was red, etc.  He tried to help though.  Ha ha ha The boat was “the truck” on many occasions, too. 

Sometimes when Paul napped, I would go outside and call a friend of ours.  He distracted me, made me laugh, and talking with someone with same likes and dislikes was a great distraction for me.  However, it was not long before I apparently wore him out, because he would tell me that I was being a dramatic when I tried to discuss serious stuff…things that were emotional.  He would tell me that he was not my husband and to go talk to Paul about my concerns.  He did not know all the details about how Paul was doing, so I am sure my stress levels and emotional being did not make sense to him, but if he was already calling me a dramatic, then how could I tell him about the rest…things he did not know, things that I was working my way up to?  I could not.  My goal was a distraction, not a “pity party”, and felt that my outlet was instantly gone.  Our friendship spiraled down to no communication at all these days.

Tests after tests after tests, his new “outside the box thinker” neurologist is close to a diagnosis, and it is most likely not MS as thought for so many years, but possibly a genetic and autoimmune disorder that he probably has had all his life.  With new meds and a new direction, Paul is able to communicate better, is now up much of the day, and can think better, too.  His ideas are flowing again.  He is more mobile, and he is more himself, but that is all within the past month or so on these new meds.  He still struggles with speech, but in a different way.  The medicine that is helping him makes his voice hoarse and weak.  He is better at naming his topics, subjects, and uses fewer pronouns and uses more specific names now, too.  PHEW!  CONVERSATION again, though often short lived, but still!  PROGRESS!

The most recent “battles” have been over how I do things.  His thought processes have returned somewhat with this new meds, but in the past 10-11 months, I was the one that did everything and during that time, I did things how it was easiest and most convenient for me as I was the one doing them.  Now that he has some of his thought processes back, he has his own way of doing things again, and guess what?  It is still me that is doing those things, so I told him that I have lived like this for nearly a year, adapted my own ways, so just let me do things my way.  He means well, and is trying to be helpful, but his way is not helpful to me when I am the one still doing the task.   I think that is difficult for him to understand.

He has no real concept at how “lost” he was for such a long period of time.  Sometimes, I will listen to his directions, start to do them and he changes his mind;  that is not what he wanted me to do, so I listen and follow a different set of instructions all over again.  Sometimes, this is repeated several times when I could just do it my way in a matter of seconds.  That is our latest frustration.  I applaud him greatly for having his own thoughts, but he needs to remember that it was ME that was having to do things on my own for all those months.  That is a concept that he says he understands, but I do not think he fully comprehends how everyday living has changed for us both, and how I had to go about things differently without help.

Paul will “never” get better, and damages done are done neurologically, but if medicine can help in other ways, such as stamina, in cognitive abilities, socializing, and more mobility, then bring on the medicines, because it is good to see him more active and able to think, and hold a conversation again!

During all this, I have changed some as a person.  I learned that I am not as strong emotionally and mentally as I thought.  Nowadays, I call people out when someone tries to pull something over my eyes and then denies it.  When someone lies to me and I catch it, I let it be known, too.  Why should I let them lie to me?  Where is the respect for me?  I call out deception when I see it now, too.  I figure if someone thinks so little of me, or us, to do any of that, then I need to open my mouth and call attention to it, because how dare they think we are too stupid to know better?  We are not stupid people, and our perception is keen.  If I call you on a lie or deception, then maybe one should just tell the truth in the first place and do not take us as fools.  I will call attention to things and hold that person accountable for their words and actions, too.  People do not see what they choose not to see, but if it affects Paul or I, do not expect me to sit idle...I will call attention to it like it or not.  THAT is the new me.  Honestly, now, I would not decline a reality show, because I will not mind telling the camera operator to get the f*ck out of my face or care if they aired it!  (Joking, of course.)

As Paul slowly returns, and I do not think he will return to the state he was prior to the rescue, I am relieved, more relaxed, laughing more, whistling more, singing stupid songs more, and find myself wanting to be more creative, to look for unique things in nature again.  I am also returning more to my old self, too.  But, remember my new self, and “don’t piss me off”.  Oh wait, I was like that before.  The family always warned people, “Just don’t piss her off”.  But, honestly, I have the biggest heart of all…until I am crossed.  So, I guess not much has changed there, huh?

I love my husband to no end and we are a very, very happy couple.  We can and always have been able to be open and honest with each other.  There is nothing I would not do for him and I will always be here as his closest friend as well as the best wife I can be.  He is my soul mate through and through.  I applaud his determination that seems never-ending.  He is my hero, and a “superman” to so many. 

Thankfully, this new doctor is that outside the box thinker and has given my husband back the best he can be versus that doctor that kept him a zombie for so long.  His doctor “came” with a 5-star rating.  I would easily give Doctor Bomprezzi a 10 star rating without thought, without question!  He gave me “My Paul” back….kinda, but I will take him as is forever and ever. 

Thank you all for your patience in my posts in the past year.  I know I have come across as harsh and direct sometimes, but direct was my goal, as I had little or no time to eloquently type anything, or to please everyone either.  What you saw was my true being coming out under stress, I guess.  I had a few rants, but I always do.  We have done very little joking online and many of you have asked where we were because we were not the same, less jokes, less fun, fewer conversations, only one “Hon-Ney” video, I think, and we were both somewhat serious all the time.

I think many of you are as serious as we are when it comes to such a post as I just plopped up on my personal Facebook wall.  I just typed, “Who is here right now?” and that scared a few people thinking that I needed help or there was an emergency.  That is how serious we have been in the past year, and that is how serious Paul’s condition was throughout it all.  People that understood truly, deeply understood, and could read between the unspoken/un-typed lines. 

I am hoping, more so than you are, that we are slowly returning to those fun people, because we miss those people, too.  I have lost a few friends in the past month because I held them accountable for their words and actions, and that still saddens me.  I may have been wrong in being so blunt, but I KNOW what I saw and heard, and it is not my issue if they deny it or cannot admit to such things to themselves or even to each other .  I HAVE to look after Paul and myself…simple as that.  One does not have to understand what we have been through this past year, but if one does not try, then how can one understand our being throughout it all…or even how we were forced to change?

Thursday, February 6, 2014

As seen from Paul's eyes...

As seen from Paul's eyes.... 
Copyright 2014 by Paul Willey

I had a MS diagnoses for years and I am technically labeled a tetraplegic (same as quadriplegic) because of partial paralysis of all four limbs, I usually need some assistance but we try to spend as much time as possible living at our off grid camp on Millinocket Lake in T1R8, Maine.

We always knew there was some inherent risk with me staying in here with its snowmobile only access during the winter months; MS isn't my only medical condition.  Neither the dramatic change in both of our lives on that day before Nor’easter Nemo would hit in February 2013.  I found myself trying to help Lori-Ann prepare for the blizzard by trying to hooking the Ranger up to the plow, to her having to use every bit of her strength to get me to into bed, where I would lie unable to move for the next 48 hours....

As shocked, as I was that it happened, only with foresight, did I realize how the warning signs were there all along, especially in the 3-4 years prior.

1.   I was losing my ability to push through things.  Projects or ideas of things I wanted to accomplish around camp were piling up around camp.  It was getting harder and harder for me to get around.  I could no longer fish the stream at all, even on my best days, and my "good" morning time, had faded away.  A time of day when I knew I could always count on being able to get things done.  I relied more and more on Lori-Ann doing things.  We lost a GREAT ice shack due to it freezing in the ice in 2012.  We built the shack back in 2004, but we had to buy a commercial one to replace it as I knew it was beyond my realm of abilities to help Lori-Ann make a new one.  Other projects Lori-Ann wanted me to hire out, because she couldn't do them alone with her back, but I refused because I kept refusing to admit that things were more permanent.

2.   I'd been complaining to the doctors about muscle spasms usually on my left side.  They were increasing over the years, making it more difficult to breathe, reach, and move, and the episodes were increasing and lasting longer and longer.  More muscle relaxers ware the answer, but I rarely took them, because hated the extra drowsiness.  Other pain types increased as well, and the cure for those was a seizure medication that did help.

3.  During this time frame, my cognitive ability had dropped, and it was apparent to us.  We would tell the examiners what was changing with me.  Every year, the VA tests me because MS can affect cognitive ability.  However, normally when I took aptitude test, I always tested very high.  For example, I took the National Teachers Exam when at one point when I was thinking of getting out of the Army despite only having six actual college classes and placed in the 98th percentile.  I would explain to them, I went from being able to always being able to multiply triple digit numbers in my head up until a few years ago to using a calculator for routine math, which is very frustrating for me.  Nevertheless, the testers would say, “Even though you are noticing changes, you are still way ahead of the rest of us".  Those words came to me last in January of 2013.

As if fate or intervention stepped in along the way, we decided that in the spring of 2013 we were going to make a road trip to see our son Joshua in Hollywood and it was time to get a new accessible vehicle as well, so in Oct. 2012 we started that process as well.  The old van was on its last leg, and the ramp was unsafe.  The van came in around the first week of January 2013, and off we headed to camp for another winter.

We finally get to camp and look forward to spending a good two months of winter seclusion before heading on the road trip around the country.  In the mean time I notice the episodes of spasms in my side are getting worse and worse, I am feeling more and more as if I have broken ribs and split open sides after we do anything.  Our days of Ice fishing are relatively short, and I have to spend days recovering.  I cannot remember if we actually went two days in a row, but if we did, the second day was very short.  I was starting to notice my right side starting to get involved more and more.

January 28, 2013 was supposed was supposed to be relatively warm that night, and clear so we decided to sleep out in the ice shack.  It was supposed to be 15 degrees, and like fools, we didn't insulate the bottom of the air mattress from the cold of the Ice.  We checked the traps, but after each hour, they took a LOT of effort to free them from the Ice.  The actual temp back at camp was -6, it was probably much colder out on the open lake.  Both of my sides were in severe spasms and I could barely breathe that night.  Instead of spending another day Ice fishing, we decided to call it quits shortly after sunrise as I was in too much pain.  I had to drive extremely slow back to camp and thought I would never make it back here.

I took the extra muscle relaxers and rested up for a few days as the spasms relaxed.  We made it back ice fishing February 1st and 3rd though.  Before I needed a few more days rest.  Then Nemo was in the forecast for February 9th.

The blizzard was supposed to keep most of its fury south of here, but we wanted to be ready.  So, we started to prepare in the morning of February 8th.  I was already having spasms on both my sides that day from our typical 16-mile loop simple snowmobile ride out to the snowmobile club to meet up with our good friends Bob Hope the evening before for a supper.  

I wasn't thinking quite clear when I went to put the plow on.  It's a simple drive up operation, auto mount.  Just hold a rocker switch and it mounts the on plow.  I crawled into the Ranger.  Drove up to the plow PERFECTLY aligned.  Crawled out and the rocker switch didn't work.  My spasms are increasing, and I'm fighting to breath and move and I am feeling the spasms in my legs now.  I hit the toggle switch, NOTHING... there is no power to the plow.  I look under the hood.  Fuse is good.  I have no I try two more times.  Nothing.  I barely make it back to the camp where Lori-Ann is inside getting something.  I tell her I need her to get me undressed quick and get me to bed because I am not going to be able to move soon.  This is something 100 percent new to me.  I've been stuck in bed, but not because my body is totally seized up.  In the past I was able to go to the bathroom with assistance, but not this time.

 (As a side note, we did still make the road trip, and during it I was thinking about the plow and I told Lori-Ann, I don't think I had the Ranger running when I tried to mount the plow, and yes in fact that was the problem) 

So I take more meds and just try to relax assuming the spasms will subside in a few hours so I can resume our normal lives.  After several hours, I still can't move.  At this point I start taking maximum prescribed dosages of my meds, still no relief.  The next morning.  STILL not one bit of improvement.  Totally immobile.    

My thought process is this.  "Nemo is here and there are other people out in civilization that may need help that could be in a car accident, a house fire, or whatever it may be.  IF Nemo wasn't here I would call for medical help, BUT "I" willingly and knowingly put myself in this situation, knowing my medical condition, knowing I am always at risk needing rescue.  "I" don't want to be responsible for delaying rescue to someone else so I will wait until after the storm is over."

So, I look up online for maximum dosages of my medications, and carefully use them as a treatment guide in hopes of relief.  All I need to be able to do is get out of bed, so I can get on a Snowmobile come Sunday morning.  Nothing…  

I am trying to time calling for a rescue, to include Lori-Ann taking everything out to the truck.
I expect 2 hours.  After all, it is snowmobile only, and whenever we've had to call non-rescue type authorities in here when they could drive in.  The on-scene response time has varied from 2 hours to never in the past.

I can't remember when I called; I think it was around 1PMish.  Lori-Ann did everything she could do at camp, to include draining all the water supplies, shutting off all the power she could for the time being, setting up the extra security, towing in the ice fishing shack by herself from the lake, etc, etc, and was already making her first packing run out to the truck.

Upon her return I heard other voices.  It was just an hour and the rescue squad was already with her!  I was in shock!  When she returned from the truck, they were already at what we call the "4 corners".  They were able to follow her in via snowmobile the rest of the way into camp.

It was Mark and Heidi Evers.  I explained to them why I didn't call the day before was essentially, that with my medical history "I" put myself in a high-risk situation during the storm.  While they didn't scold me in any way, sort, or form.  They both assured me that they don't feel that way and I shouldn't either.  They assured me that they appreciate rescuing someone that's trying to make the best of life despite their struggles.  They had appreciative nods and there was no need to go into any details.  Even though I still don't know if a repeat event happens, if I'd do anything different, the sentiment and true emotion behind what they said still brings a tear to my eye one year later as I type this.  

I don't remember a lot from the actual evacuation and emergency room stay.  I remembered a lot of medications.  They managed to get me on a stretcher, out of the bedroom and out of the camp and into a rescue sled.  I JUST remembered they put my snowmobile helmet on me.  I was packed VERY tightly in the newly acquired rescue sled by Millinocket, and I definitely did not have a room with a view.  It was a smooth trip out and there was a place for Mark to sit as Heidi drove and towed us out.  Lori-Ann stayed behind to finish packing up the second load and finish winterizing the camp, (We thought she'd have time to finish that while we were still waiting for them to show).  I was already in the ER.  When Lori-Ann arrived.  I didn't get a chance to see them, but I remember Hope MacDonald and Nancy Davis stopped by as well, and Lori-Ann had a chance to talk with them.