Lessons for Parkinson's and Lewy Bodies in the ER; I should have known better!

So last night was one of those red-letter nights. Really, really red- with lights and sirens and stretchers and backboards and firemen.And today was a red-eye day, as in I haven't had any sleep yet.

Casper had several really bad days, and was tremoring so badly I requested a wheelchair a few days ago. Yesterday her teeth were chattering again. I got home late from work, and was trying to get dinner made in a hurry when Kerry heard her yelling my name and a thump from upstairs. Casper never uses my name unless I am really in trouble. We raced up the stairs to find her on the floor, holding her side, dazed and confused and hurt. She refused to allow me to call for help, and Kerry and I got her up and back into bed. Not three minutes later there was another thump. And silence.

Dinner was turned off, back up the stairs, and Casper is completely unconscious on the floor. Nothing roused her. We called 9-1-1. She didn't respond to us holding her chest to count respirations, she didn't respond to Kerry crying, she didn't hear anything. Katrina called calmed Kerry and watched Casper while I waited for the ambulance. Those times the minutes drag on like they will never get there.

Finally the truck and paramedics arrive, and I take them up to Casper, who is awake but not alert. I had her meds out for them. I tried to tell them her history enough to get an accurate report for them. I was brushed off. I remember Linda's irritation with paramedics as an ER nurse, and their rush to know everything without asking anything. They were, at times, the bane of her existence. Last night they were mine.

"She has dementia. Lewy Body Dementia. It is part of her Parkinson's Disease."

"She has Alzheimer's" was the report across the room, over Casper's wide open ears.

"No, she does not have Alzheimer's"

"You just said she does."

"No, she does not."

"Why doesn't she have Alzheimer's meds? Why is she taking pain meds?"

"She has PD. She has pain from that. She doesn't have Alzheimer's."

• Lesson for Emergencies #1- have a medical history ready at all times. Mine was in my hard drive, which had no ink for the printer. I am obsessive about that list and history. I keep it updated after every appointment.
• Lesson #2- do not run out of ink. It does not help to be obsessive if you can't print the list!
• Lesson #3- have basic PD and LBD info available in easy to read format. Basic symptoms,

They got Casper on a backboard and had to lift her down the stairs. The stress was making her tremor more and she was bound to a backboard. She had a goose egg being pressed into the backboard. I could see where this was going. Nowhere good.

I got to the ER first. It was packed. Police cars and ambulances everywhere, On a Wednesday night! They took Casper in the back. Two burly security guards told me it would be 25 minutes before I could go back, that she had to "get settled into a room first." Right. Not on my watch.

• Lesson #4- never take no for an answer. I stepped outside and called the backline for the ER, told them I was there, that Casper could not give a history, and she needed me and so did they if they wanted to know what was going on. I stepped back in to face the guards, who told me no again as a nurse was opening the door for me.

I found Casper, still on the backboard, in the hallway, under bright lights, with the paramedic who kept insisting she had Alzheimer's. Only now he decided that she had an anxiety disorder and no other medical condition. 12 weeks of classes and he could diagnose her. He kept telling anyone who would listen she was only anxious, and that if you talked to her she would "calm down." Her feet were shaking so badly the gurney was rocking, and the straps were digging into her ankles. Not a good sign. Had she not been tied down the paramedic would be in trouble.

The first ER nurse came for report. It included one fall, not two, no other medical conditions, no history. Why did she fall? He had no idea.

• Lesson #5- bring extra copies of the medical history and med list. The paramedics lost their list. Have a rationale for each med- the pain meds created a flag at the ER that we were there seeking pain meds. I had to say repeatedly we didn't want any meds. We wanted a CT to make sure Casper didn't have a bleed in her skull and X-rays of her ribs. Make sure the list says there is confusion and agitation.

We waited for what seemed like forever but was actually about 30 minutes for a bed. Casper was in agony from the backboard. It was pressing on the site of impact on her head. I tried to get the nurse's attention. She kept saying "She's alert and oriented- she can make her own decisions." When Casper was able to get out of the restraints another nurse told the treating nurse, who responded "I told her not to." Then and only then did she actually come to Casper's bedside, took the rest of the board out from under her, and said "If you had stayed on the board you would be a priority. Now you are just a number on a list. Now you have to wait." Casper looked at her, blankly. Remember, Casper is a nurse. She should have known that. But her cognition was impacted, and she really wasn't all that alert or oriented. The nurse didn't get it because she had not heard a real history. And she still was not willing to listen.

Casper tried to get up to leave. She was dizzy, confused, and uncoordinated. She started to fall again. Then there was a look of alarm on the nurse's face. "Is this what happens?" Yep- just like that. Want to see how well she falls? Or are you ready to hear it now? Just then paramedic boy walked back in, to give yet another rendition of his song for the night. Again, it was wrong. Casper tried to interrupt him and was shushed "He has other people to go pick up. You need to stop interrupting. He's telling me what happened."

Let's see- Casper was the patient. She may be disoriented, but she knows how she fell. She knows where she hurts. Be quiet- the professional is talking.

• Lesson #6- Interrupt. Stop bad information from getting into that record.

Two hours later, we were done with CT, X-rays, and exams. We saw the doctor, who came in with the information that Casper had an anxiety disorder that made her confused and fall over while getting dressed and that she fell once and never lost consciousness. The look on his face when we explained that she was turning over in bed, didn't feel herself fall, fell twice, was completely unresponsive, and had an injury that was palpable was priceless. NONE of that was in her record. He updated the records, and did a better exam. Then and only then did Casper transform into a real patient with a real illness, not a drug seeking zombie who fell down while trying to put her shoes on. (Do you think someone in their jammies would even be putting their shoes on?) (She was barefoot in the ER).

Suddenly the nurse was offering socks, the doctor was explaining that she probably had fractures he could not see on the xrays, and that she needed to be cautious when she got home. Then and only then did the nurse offer Casper any comfort measures. Three hours later. She never asked about her head because the paramedic insisted there was no contusion. There is now- it protrudes about an inch off her head. They never offered ice for the non-existent contusion that nobody palpated. Casper continued to be slow in her responses, and confused in hearing instructions. Only after three hours did the nurse, who had not spent any time with her but documented her stay in the ER, notice anything amiss.

"Is this how she is all the time?" (Finally someone whispered and made sure Casper did not hear). Yes, sometimes, but she has to have a concussion at this bpoint to add to the usual issues. This is not her even on a bad day.

"Why isn't she on PD meds?" LBD made them impossible. It creates side effects.

"This must be so hard for her. For you." The "for you" was for Casper- finally someone looked at her. Both the nurse and the doctor.

They got a wheelchair, and made her ride in it. They took time to explain why she needed it. They explained what to look for and to come back if needed- to Casper. Finally.

Lesson #7- make sure you are heard. And make sure the patient is treated as a person. Dementia does not make you stupid, or less. You deserve to be treated as an individual.

The final lesson of the night? Be grateful when the damage isn't that bad. And be prepared for the emotional fallout of realizing that the disease is moving into a new stage and new precautions are needed. Those realizations are just not okay. They are necessary. But they are not a happy moment. Holding hands and talking about them makes it sting a little less.

Talking about equipment- "I do not need a chair!"

After the pets stopped talking this week the roller coaster picked up speed. I think I prefer talking poodles and yapping cats. Fuzzy and I are going to have to talk later...

It's been a full week of dementia and Parkinson's. When the shaking subsided, the thoughts increased. I am  afraid to get undressed in our room because I am almost convinced my late in laws are visiting at night. Since we never met I do not want to meet them in the altogether. There are serious considerations for meeting in laws with bedhead and unbrushed teeth! Last Tuesday morning I almost had to take Jay to school at 2am. The only problem with that is that he is now almost 49 years old and lives in NC. He did not want to go to school. I know that without even asking him.

We took Casper off all the PD meds, and some of the thoughts are reducing, but the symptoms are now picking up steam. We seem to be at a crossroads- either tremor or be delusional. What a choice! PD sounds like such a simple disease. You tremor a bit, maybe you are a little unsteady on your feet...

Not so much. We tried to go show shopping last Saturday. Casper is now dragging her foot so much that one shoe wears out first.  We lasted one hour at the mall. Looking at shoes was anxiety provoking. Walking was hard. Talking was hard. And the stores- who decided that stores all need loud music? Casper gave up. She was grey from exhaustion and soaked in sweat from the exertion of walking around for an hour.

Then I really blew it. Someday I am going to learn finesse. Apparently not in this life, however.

"If we had a wheelchair you could use it when you needed it and we could stay out longer. You would not get so tired."

Ruh Roh. The LOOK. Remember, PD causes a mask on your face- there is not emotion when you reach that stage that can be seen on your face. Smiling takes effort. otherwise, there is simply no emotion. That by itself can be intimidating. But when your spouse suggests a wheelchair? Yeah- there was emotion. All in the eyes, but it was there. And completely focused on me. Not in a good way, either.

Okay, I am in trouble. I can stop, or just plunge ahead like a polar bear on New Year's. Plunge I did. "You do not have to use it. But we can keep it in the car, and I could go get it it on bad days so we can still be out and part of life." Silence. "It would let us be out more."

"I am not using a chair. If I can't walk I will stay home." One last college try- a below the belt one, I admit: "Linda hated hers too, but she used it so we could still do things together." "Please?"

Silence. This is one of the many hard talks that have to happen when someone is seriously ill. They are unavoidable, they are never fun, and they are absolutely necessary. Being locked in a house is not good for anyone. PD is especially cruel in that one day you feel good, the next you can't walk, and one day you think you feel good and an hour later you have to sleep. There is no way to plan for anything. So things like wheelchairs and scooters and walkers become necessary, and are universally despised.

"No."

Two minutes later Casper nearly fell simply walking. When we got home she fell trying to get undressed. She was tremoring so badly her teeth were chattering.

Yesterday I requested a chair from the doctor's office. They are getting it approved. I told Casper as we were talking about her illness. She asked me how she was going to die. Another one of those hard conversations. We talked about choking, pneumonia, falls, The usual end of life for PD. The ugly side of what we face every day. I told her the chair would be coming.

When I got home yesterday evening she was ready for walk. A long one. The fight was back in her. Walk we did- and even visited good friends along the way. Then the symptoms roared back. We got home with a few minor incidents, and she was in bed moments later. Today she can't get up without assistance. It is life with PD. And we need the chair. It's a process. So is learning finesse. Maybe we can both get there at the same time?

Dear doctor,...

Dear Doctor __________,

I realize you went to med school and all that. I know you are highly educated and work hard. I know you see a lot more patients than you really want to. I get it.

I know you spend more and more of your time fighting insurance companies and HMO's. Believe it or not, those of us trapped in that system, or who work in billing those groups totally get it. Really we do.

I know you went into medicine for a reason. I have to believe it was for more than to make your mom happy. I want to think you want to meet your patient's needs despite the insurance mess and the tiny amount of time you have available for each patient. I really need to think you walk into that exam room with only my spouse's needs in front of you. I need to think you read my list of symptoms and that you are hearing what is being said.

But here's what the issue is. We need you to be honest. Honest to a fault. And tot ake the time to have conversations you don't want to have.

Med school doesn't teach you to talk about talking to your patient. About those "hard talks." I know they don't cover much because we get the residents in our hospice office to learn what to say to dying patients. They ride with a nurse a couple of times. I am glad they are making male students climb into stirrups these days (that's pretty awesome- now you know what it feels like to be told to slide to the end of the bed and "relax.").

But what is not covered is how to talk, openly, with your patients about their illness. About prognosis. About what might really happen. What patients and families need most is your honesty. I can't count anymore the number of families who have been sent home on hospice who never expected it. Never saw it coming. One woman with two small kids who was being offered experimental chemo only a week before she died. She never got to say goodbye to her kids. Families are afraid to sign  DNR's because their loved one might be brought back and live longer. They saw it on TV. Nobody ever told them that it would be futile- and hurt.

There seems to be some idea out there that being honest about illness and disease process will take away hope. That giving a patient the real picture so they can choose a course of treatment, of life, will cause the patient to shut down and give up.

Maybe it's because I work in hospice. Maybe because I have always been the emergency manager in the family. Maybe I am just weird. But it seems to me that being told what your options are, what to expect, what choices you might have- those are things someone should know about their own body. When you are prescribing birth control you give more options and information than you do about cancer or heart disease or Parkinson's. Why is that? Why do patients and families need to go to support groups and online to learn what you are not comfortable saying?

It took us over three years to get a real diagnosis for Casper. The symptoms were all there from the beginning. Had anyone been really listening her illness is classic in its progression. The prognosis is very clear. Yet, when we asked what to expect (after being in a waiting room filled with folks who were far more debilitated) you said "there is no way to know. We will have to wait and see. Not everyone ends up on hospice." When Casper asked you about work, you patted her knee and said "Let's take this one step at a time." That's so cute considering she has PD and sometimes can't step at all. When we told our other docs about her disease progression,  I heard "She'll get better. This can't happen. It will turn around." Really? What research are you reading?

I appreciate that you are all uncomfortable admitting you can't fix this. You would be amazed at how many families I have worked with over the years who could see their doctors were struggling with the words and ended up comforting their doctor. I know we did with some of Linda's too. I know you see the look in Casper's eyes begging you to say this could all be a giant mistake. I know it hurts. I am the one who has to get in the car afterward for the fallout. But please- when you can't find the words to say, say that. Say "I hate telling you this." Say something. But be honest. She needs to know you hate it too. But she needs to hear what is real.

We have plans to make. We know you do not have a crystal ball. We say that to folks all the time. But we do have an idea of where each path leads. We know you do too. Talk about that path. You would want the same too.

"Please Come Home- the Pets are Talking."

Sometimes you just have to laugh. Now matter how bad it is- laughing helps. Not laughing at Casper- laughing with her and trying to lighten the mood when things are, well, not-so-good.

It's been a long few days. We had lunch out on Saturday, and Casper was able to enjoy some of it. She didn't understand some of the conversations, and forgot some of the people we talked about, but she loved being with people she used to work with. She needs connections even if she doesn't think she does.

By the time we were winding down Saturday evening things started to go south. Deep South. Like the Equator and dropping. We entered a whole new hemisphere. It started with agitation, which is far worse than it sounds. There needs to be a better word. I'm too tired to think of one, but I am open to suggestions. Agitation , to me, sounds like "I'm grumpy and leave me alone, and if you come near I might get upset." Agitation in real life is more like "I can't make my legs and arms and neck stop moving; my thoughts are all jumbled and noisy and make me feel stupid and crazy; I can't stand people coming and going; I need to be alone- wait stop- I need you next to me; I want to sleep but I can't and my body keeps jumping and now it hurts and I got up because I was confused and just fell down."

That's "agitation." Then morph into REM  behavioral sleep disorder and you are off to the races.

The problem is I don't like races. NASCAR is not fun to watch, and having it in my bed next to me is not a spectator sport. I actually like sleeping. Quietly. Building pillow forts is not right when you are nearly fifty. But with RBSD it's not for fun- it's for protection.

Then the dreams and delusions started to really make their play. We had to get up because Casper's parents were coming to visit- at 3am. We had to find a house for them to live in near us. She had to go to work. I got up for church on Sunday and she slept, finally. She has no memories of most of it, and what she does remember is upsetting because she knows it's not real. She's exhausted and sore from all the physical activity all night long. Little known PD (and Lewy Body) factoid- this disease HURTS. Tremoring and jumping and falling- they HURT.

Then it just got more interesting. Sunday evening Casper was sleeping and waking and becoming more unaware of the delusions being unreal. There is no point in telling someone with dementia that their thought process is wrong. It never, ever helps. (Unless she is trying to open a car door on the freeway. Then it's a necessity!) (So are car doors that lock from the driver's side.)

After yet another wild night on Sunday, Monday should have been a quiet day. We changed her meds with the neurologist last week when the delusions started becoming more pronounced. He thought it should make a difference over the weekend. Maybe it did- in a big bad way. There really is no way to know. There aren't labs to tell you how much dopamine is missing in a brain. There is not way to tell what works but trial and error. And history. Except Casper can't remember, and I don't know what she's thinking. Such a pair!

Instead, at work on Monday I got a distressed call- "Come home. The animals are talking too loudly."

Okay, I admit. After I hung up I laughed. But first there was this conversation:
"Are they talking in cat and dog or people?"
"People. But I can't make out what they are saying. I'm trying to understand but I can't"
"Are they talking out loud or in your head?"
"I can't tell. I think both."

I raced home. Casper was shaking like a leaf. She tried to get up but fell backward (another hallmark of PD and Lewy- most people can't tip over backward. We are built with balance to stop that. PD/Lewy patients can't tell when they are going over. Like Weebles, but when they wobble they do fall down.). I caught her, we got her cleaned up a bit, and back to bed. Meds down, choking a bit. She was hungry. Ice cream was the only acceptable answer. I tried a PBJ sandwich, but it wasn't sweet enough. (Dementia changes taste buds- only sweet and salty remain).

The animals kept talking, but settled down. They apparently knew I was home and listening. Fuzzy was confused- why was Casper so irritated with her favorite poodle? My lunch time was over- I needed to be out the door. We found a TV station that would not have violence or animals or older parents. (No reason to provide fodder for delusions). We talked about Hawaii to plant a seed in her memory. I prayed it would work.

At five I called- one more patient to see then I would be home. She was sleepy but okay. At 6:15 when I was heading upstairs she was angry- really angry. Casper is never, ever angry. Ever. She doesn't like that emotion, and she stays away from it at all costs. Except today. Why?

"You were supposed to be home at five."
"I called. Can you remember?"
That look- the "Where have I gone? What happened to me?" look. The anger fades.

"I want to go back to work. I want to matter."
"You do matter. You can't work." Sometimes you just have to have those hard conversations.

"This is that disease. It's doing this."
"Yes it is."
"You are going to get tired of me."
"No, I am going to love you even when you can't remember who I am. Because I know who you are."

We had a moment to talk about legal documents, and a promise not to ever place her. Casper has seen end stage PD and dementia. She's cared for patients whose families left them behind in facilities. I reminded her that she saw me caring for Linda.
"You loved her with all your heart."
Indeed. Just like you.
"You kept her home"
And I will you.
She finally calmed down.

Then later, watching HGTV (safest TV for delusions that I can find.) "We need to buy a house like that for when we move so my parents and your mom can have the first floor and not have stairs for the bedrooms or bathroom."

Here we go again. Except this time she never realized it was a delusion. There was no recognition. None. I texted a nurse friend, who had heard some of it over the phone earlier, heard the confusion as Casper was trying to figure out who I was talking to. Her reply? "I don't know what to say. This is unexpected." To say the least.

Time to go to work. I am not waking her this morning. I'm kind of afraid to see who is in there today. I have to work late at my office. Part of the plan is to make the office more accommodating so I can bring her with me in a safe and comfortable place. Like Justice Sandra Day O'Conner, who brought her husband to the Supreme Court for years with Alzheimer's because he was to "agitated" when she left for the day. Maybe that's who I should ask for a better word. Doctors- they do not live this. Spouses- we do.

When vacation isn't vacation anymore

"I want to go back to doing what I used to."

That started the whole crazy idea of a week in the mountains. Casper used to love to fish. When we were in Hawaii before she got sick she talked about pier fishing, and we never got around to it. I've been regretting that ever since. Being on a boat is not an option for either of us- I get seasick just floating, and she can't swim. But on a pier she can land a fish. Or used to.

"You want to go fishing? I can make that happen. We are going fishing. We'll make it our mini vacation for the year."

I texted a girlfriend, rented a family cabin, got the time off, and Casper invited my mom. We raided my mom's garage for my dad's fishing gear (and if you know that garage, that was an adventure all by itself!). Casper and my cousin Kelly put the fishing poles together the night before we we left. She couldn't remember how to tie the lures or how to load the pole itself with the tackle. We managed the sudden issue of Chloe needing to be home most of the week for an unexpected college class with a bribe of sushi out for herself and her boyfriend for their one year anniversary and the use of the car for a day while we were still in Big Bear. I worked too much to be able to be be away from work and my fledgling practice, and suddenly we were at blast off day. And boy did we blast- in a million directions.

I went to work from 8-12 that day, and the kids were supposed to drive up with Grandma. Lesson number one- make sure Grandma has her keys and purse attached to her side with surgical staples. It was well over 105 degrees as the kids were frantically pulling her house apart to find them. I came out of one session with a client to discover my text messages had blown up with frantic, then upset, then frustrated, then angry texts about Grammy. Finally- eureka! They were located. Exactly where they were supposed to be. But then a swimsuit and towels were forgotten, Chloe was sullen that she had to come home early, and it was so HOT outside. And I was still at work.

I raced home to find the kids and Grammy were making their escape, the pets were out of food, and I still hadn't packed, something I always do at least a day early. Second lesson: do not change the routine. Pack, even if in my sleep. Do NOT leave that to chance. I walked in to find Casper pacing. Really, really pacing. The bags were out, meds were in a pack, the kids were gone so we better go too. Now. Right now. Immediately. I wished I had meds for me...

"Hold on. I need to check that we have what we need, and we still need groceries. Just give me a moment." No- we need to go. Now. Did I mention that Parkinson's causes anxiety and agitation when stressed? Are you feeling it right now? Pacing, hand wringing, fingers pill rolling (imagine a pill between your thumb and forefinger and rolling it between them. It's a classic PD symptom, and one that occurs more and faster when stressed). I find myself totally unable to concentrate- and that never happens. I make sure I at least have socks and underwear, but as for the rest- well, they have stores in Big Bear, right?

The car gets loaded, but again Casper needs to take charge, so I have no idea where anything is. Lesson Three: Load the night before. We are never ever doing this again.

Off to the store. Did I mention it is now 110 degrees? In the shade? With no shade? Oh yes, and we are now driving Casper's smaller car, because she needed to drive. Heaven help me. My Sequoia would hold all our gear and a small army. Her Highlander now has her fishing pole (preloaded with tackle because she was afraid she could not do it herself) attached to her shirt and skin. Now there is blood. Hot, anxious, agitated, and blood. I need to go to church this Sunday.... "Get it out of me!" What? Oh yes, I get to unhook her and try to get the pole away. I am not about to mention that in my car this would never have happened. Emergency kit? I didn't pack the car. I can't find it.

We manage to get to the grocery store. Casper is driving. I am nervous. There we are-us and a million of our neighbors, in the heat, and more shoppers in scooters than I have ever seen before. Lesson Four- never leave the shopping to blast off day. It's too much stress. For both of us. We careen around the aisles. Casper has no concept that she is blocking traffic, leaving the cart wherever it is to go grab one thing or another. Four times- "Do we need bbq sauce?" Four times- "No- we aren't doing real bbq- we don't need it." By the time we check out we have three different bottles of sauce and Casper dives back into the store aisles looking for the molasses, pineapple, and brown sugar needed for a bbq we are not doing. We have precut coleslaw greens- and she hates coleslaw cut that way. Casper grates hers finely and makes the smoothest slaw ever. There is no way we are going to use it. There is something missing- there is no candy and there are no cookies in the basket (or the buggy- if you are Southern). I ask. "No- no candy. I am going to lose this weight." Oh yes, this will be fun. With Parkinson's sweet is one of the few things you can taste. Filet mignon? Ho hum. Lobster? Yucky texture. Reese's Peanut Butter Cups- rock on!

Checkout, load the car, run home with the pet food, get the swimsuit one of the kids has forgotten, answer their nine thousand calls asking why we have not left Riverside yet since they are now sitting at Denny's ordering lunch looking at Big Bear Lake.
"Are we ready?"
"Did you get my meds?"
Lesson Five: remember never to argue with someone who has memory loss, and never remind them they did something they cannot remember. It will only make things worse, and hurt feelings. Deeply. I, of course, completely lost it at that moment. It was hot. I was tired. There was already blood. The phone would not stop ringing. Chloe was doing a major sulk job. Casper was driving even though she was so shaky her leg made the car bounce as it bounced uncontrollably. So what did I do? "I didn't pack them. You did!!" Good job Jill. Way to make it better. We pull over. I have to take all the groceries for five days for five people off the luggage and out from under fishing poles with hooks on them, find the bag with the meds, which now have the shampoos and such on top, to make sure the meds are all there, including patches that are 2"x2". They, of course, are on the bottom of all of it.  Casper never said a word. She can't remember packing that bag. I always manage the meds now. It does not make sense to her that she would have packed it. I am now a confirmed lunatic. The pill rolling is now at warp speed, and the foot is thumping as she tries to cope with the stress. This is vacation. Remember?

Lesson Six- use your friends for support. There was no way Casper was not going to drive. There was no way I could relax knowing she should not be driving. There comes a time when driving is no longer possible. We are in the grey area still. She can physically drive, there have been no accidents. And she still needs to feel independent and a complete partner. I so get that. Then there is riding next to her or worrying about her on the road. It's a balance. I pray that when the time comes I will have the right words. Casper knows it's an issue. She's been worrying about her license renewal all year. In the meantime, I lean on my friends. All the way up the mountains, all 8000 feet. Texting, Facebooking, messaging- if I can't see the curves we are taking too fast or the cliff next to me, or the car we are too close to because Casper is now impatient, it must not exist. I am a bad passenger in the best of times. These are not the best of times. We finally get to Denny's, find the kids and my mom, and get to sit. It's 30 degrees cooler.

Lesson Seven- relax, whenever you can, no matter how short a moment. Enjoy what is good. We have a bite, we find the cabin, it's accessible enough for all of us, and I watch in amazement as our kids make sure Grammy has her walker loaded and unloaded,  that she has help with the stairs, and carry in her things. The things every parent is proud to see- kids have learned the important lessons. Casper notices too. She wants to crash, but suddenly there is an urgent need to go get fishing licenses. She and the kids take off with Kerry driving while I make sense of what got up the hill with us and take stock of what is missing.

Lesson Seven- enjoy the moments. Soak them in. Even if they are just moments. We had some great moments. Casper and Chloe and Kelly fishing. Kerry and Casper fishing. For ten minutes. Until Kerry was so frustrated with the seaweed and Casper was so agitated we gave up. Walking around the lake. Enjoying the cool weather. Time with all of us together. Casper making friends with some of the little kids by the lake and pool. We were away from work, from pets, from interruptions. That was magic. We were never away from Parkinson's. Of the five days we were gone, two were spent in bed all day because the tremors and agitation was so severe. One day Casper got up and almost fell down the stairs- she was late to meet her dad by the lake. She was crushed when she realized he wasn't there- and that she was having delusions again.

Vacation will not include a high altitude again for us. I will miss mountains. We had to give them up for Linda because she could not breathe and her heart couldn't function with the pulmonary fibrosis. Casper reacts badly to elevation now as well. But we will go get the poles loaded for ocean fishing, and head to a pier this weekend. And yes, we bought chocolate while in Big Bear, and last night she had ice cream at 11pm when delusions woke her up. Because this stupid disease may be taking some adventures from us, but we can make others, and ice cream still fixes everything. Even having to come home from vacation that was not always vacation.