She Misses Him

She Misses Him

This is a song I heard a few years ago that describes very well how a Huntington’s Disease spouse feels. Even though the person we love is still there deep down so many changes happen that many days we don’t even recognize the person who fell in love with. This disease takes away so many things from the HD person.

  • I miss the spouse that used to be able to jump in when I was having a bad day and take over for me. The cognitive decline makes it hard for him recognize emotions and know what to do to help out.
  • I miss the husband that gave me warm hugs of comfort when bad things happened or I’m having a rough day.
  • I miss the spouse who was extremely involved with the kids and had conversations with them about life. Instead he’s been replaced with someone who argues with our 4 year old and butts heads with the 13 year old over trivial things
  • I miss the guy who could go to work everyday and come home with stories from work. These days there’s not much to tell or talk about since he can’t work anymore.
  • I miss having a spouse who could drive the kids to sports practice or run a quick errand.
  • I miss the couple who could figure things out and rarely fought. Now if he digs his heels in all I can do is wait it out or give in. We have had such a rough few years and have had some major doozies.
  • I miss the man who slept next to me for 17 years. Sleeping together proved to be too difficult for both of us as his movements kept me awake and when he’d wake up he’d worry he was keeping me up, so now I share a bunk bed with my daughter.
  • I miss the couple who worked out issues together but these days most decisions are on my shoulders.
  • I miss being able to parent together. I’ve now become the default parent who makes decisions for the kids about nearly everything.
  • I miss the future we had planned of growing old together. The future is very uncertain for our family now. We have no idea how many good years we have left but they are sure to be filled with many challenges.
  • Most of all I miss the laughter in our house. I miss being able to joke around without feeling like it might be misconstrued and need explaining. I miss the jokes of old when they didn’t go too far and become hurtful.

 

You guys, this disease is a very lonely one.  The spouse becomes the caregiver and loses the person they married before they are really gone.  Friends stop coming around which leaves the HD person alone a lot of the time.  It’s sad and I hope this gives you some insight into this awful disease and the effects of it outside of the physical changes we all see.


DISCLAIMER: This is not a post to bash my husband’s shortcomings, but a peek into the world of HD and the things that it robs.

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Having a Spouse with Huntington’s

They may…

  • Experience psychosis
  • Have memory loss
  • Have cognitive loss
  • Show aggressive behavior even if they were the most passive person
  • Become verbally or physically abusive
  • Struggle with depression
  • Exhibit OCD behaviors
  • Tell lies to family and friends to make themselves look better
  • Suffer from apathy
  • Have difficulty sleeping
  • Have an inability to concentrate
  • Be unable to control the intensity of their emotions
  • Become very self-absorbed and be unable to see another person’s point of view
  • Be unable to recognize their disabilities or evaluate their own behavior
  • Become ‘stuck’ on one idea or activity
  • Struggle to learn new things
  • Become suicidal

They will…

    Have to quit working
    Be unable to care for themselves
    Begin choking on even drinks
    Eventually die from this awful disease

This disease takes so much from each HD patient and their family. It is a cruel disease and one that I hope is erased from future generations!

Not all of the things I listed are things my family has dealt with but as a member of a large online support group I have read many stories of what our HD loved ones go through.

New York City – Day 6

Day 6th was the 4th of July and we were all very excited to see the fireworks over the East River but first we decided we wanted to spend some time by the beach since we had been sweating the entire time we had been in New York City.  So we boarded the train for the 60 minute ride to Coney Island.  It was and easy ride and then a short walk to get to the beach that was filled with LOTS of people because it was the 4th of July and they had the famous Nathan’s hot dog eating contest.  We did not get there in time to take in the contest but we did witness the swarms of people in the LONG line at the Nathan’s Hot Dog stand.

We spent some time by the water but didn’t plan ahead and bring towels so that was difficult to manage.  We also had no idea how hot the sand would be!  It would have been nice to have some sandals rather than tennis shoes for walking in the sand.  The water was nice except for the trash that was floating in many places.  We even found a couple condoms floating in the water which was really gross!  The beach was packed by the time we got there so we really didn’t have much for options on where we sat.

Once we decided to be done ‘swimming’ we found the bathrooms and found them to be quite dirty and in ill repair.  We later realized that there were nicer bathrooms further down the boardwalk.  Once we got situated we walked up to find some lunch.  We decided on Ruby’s Bar & Grill because the lines were shorter and seemed to be moving quicker.  We got our food but really were not impressed.  We did however get to witness some very exciting costumes from various other patrons.  I believe this was their way of making money because people would pay them to take pictures with them.

After we ate our lunch we headed back to the train station to head back to the hotel.  We wanted to have some down time before we headed out to the fireworks.  After some contemplation we decided that it was simplest if we just walked to the viewing location that we had chosen because getting on the subway would have put us on a farther walk.  We had decided on a viewing location based on where they put the barges in the river to shoot off the fireworks and man did we pick the right spot!  If you are trying to plan where to go google Macy’s Fireworks NYC and you should be able to find the locations of the barges and viewing locations, but note that they don’t post them til you get closer.  I was very impatient and kept checking.

So we headed off on our trek to get to the viewing location.  We figured we’d grab some food along the way but we quickly realized that there weren’t many restaurants on our route so we had to come up with a plan B.  Thankfully Google Maps is our friend and helped us find a Shake Shack location that was just a couple blocks off our path.  If you’ve never tried a Shake Shack you are missing out!!

Once we had our food we got back on the route to the viewing location as did hundreds of other people.  The City had closed down FDR drive for people to gather and the police were directing folks to the right place.  They were out in full force and were trying to crowd as many people as possible into the FDR so that everyone could have a great view.  It was a LONG wait as I think we arrived there around 7 pm and the fireworks didn’t actually start until it was completely dark and probably around 10….but we weren’t about to miss out on a spot!  It was well worth the wait as it was the best fireworks display I’ve seen.  However it was very smoky because we were so close to the action.

The walk back to the hotel for our final night in NYC was quiet and a beautiful sight as the Empire State Building came into view.  It was lit up in a patriotic themed red, white, and blue.  It was a great end to the night.

Be sure to check out the other adventures we had on our trip to NYC:

New York City – Day 1

New York City – Day 2

New York City – Day 3

New York City – Day 4

 

New York City – Day 5

On the recommendation of a coworker of mine who grew up in New York City we decided to start Day 5 with a ride on the Roosevelt Island Tram.  The island itself really had nothing much to see because it is mostly just residential development but the views from the tram are incredible!  And the tram is free to ride if you have purchased a MetroCard while you are on your vacation.  The recommendation that we were given was to switch sides of the car when you ride there and back so that you get to see the view on either side.  We did that and got some great views.  The one caution I have is that the tram is not air conditioned so it was quite hot and sticky so be prepared to sweat if the weather is warm and humid as it was for us.

After the tram ride we made our way over to Pier 83 to do a 2.5 hour harbor cruise around Manhattan Island.  We took the Best of NYC tour with Circle Line Cruises where they pointed out many of the favorite sites around the island.  It was raining that day so the view wasn’t as great as it could have been but it was nice to just sit and take in the sights.  You can go up to the bow of the boat to get good pictures but with the rain we didn’t do that but one time.  The tour guide had an awesome voice that sounded like he had a career in radio or TV voiceovers at one time and gave us many interesting details that we wouldn’t have known otherwise.  They do sell food and drinks on the boat thankfully because we were all starving by the time we got to the end of the tour.

After we got off the tour we headed to Black Tap to enjoy one of their famous Crazy Shakes.  They were $15+ depending on what you added to them but SO worth it.  This place was a recommendation of a friend who had been there and it was well worth going out of our way to get there.  The shakes were amazing and you could get a regular shake without the extras which was cheaper and tasted just as good.  We also ordered fries which were fabulous with their homemade buttermilk dill dipping sauce.  We had to wait in line for about 15-20 minutes in a bit of rain but it was well worth the wait!  It’s a good thing we were doing so much walking because we definitely racked up the calories.

See previous days events from our NYC:

New York City – Day 1

New York City – Day 2

New York City Day 3

 

 

New York City – Day 4

Day 4 was filled with more heat and lots exciting things to see!  We started out with a trek to Central Park.  Because it was so warm it was a great chance to play in the splash pad at the park.  We let the kids play there for a while before we headed off to the Central Park Zoo.

The Central Park Zoo is smaller than I expected and the animals are in very small cages.  It isn’t a zoo I would make an effort to go to again just because there isn’t much there but we did enjoy it despite the heat.  We also took in the 4D feature they had playing which was an Ice Age short film.

After we finished at the zoo we walked over to Patsy’s Pizzeria to meet an old coworker of mine for lunch.  Let me tell you they had THE BEST pizza!  I would highly recommend that you stop there if you are ever in the area.  It was phenomenal.  When we were done with lunch we walked to Levain Bakery for the most delicious cookies I have ever tasted.  They were so moist and yummy you could tell they had lots of butter in them but it’s not a dessert you should skip if you ever have the chance!

Once we had our dessert we headed over to the American Museum of Natural History.  The museum was VERY big and we needed much more time to see everything in it.  We opted to go through the areas with the animals mostly because I thought that would keep the kids’ attention the most.  If I had it to do over I think we would have gone to The Met instead to see the art.  They were both included in our Sightseeing Pass that we had purchased At the time it didn’t seem like the kids would enjoy the art but I think they would have gotten just as much out of the art as we did at the Museum of Natural History.  The neatest part of the museum was the Milstein Family Hall of Ocean Life.  It had a HUGE whale in the room and was very neat to see the true size of it.

When the museum was about to close we headed back to our hotel.  My friend had offered to watch the kids for the night so that we could have a date night, which we promptly took her up on!  We looked for some shows that were close to the hotel but didn’t come up with anything so we decided to just go have a nice peaceful dinner at a BBQ place that was close and walk around and explore NYC.  We picked Brother Jimmy’s BBQ.  It was a really delicious meal.  I am a big fan of BBQ and the true BBQ style is even better.

After dinner we walked across the street to check out the Penn Station building and the Post Office building attached to it.  The architecture is SO amazing in these old buildings it is just beautiful to look at.  We walked around the area there before heading back to the hotel.  It was such a nice time to get away and we much appreciated it.

See our other adventures on our NYC:

New York City – Day 1

New York City – Day 2

New York City Day 3

New York City – Day 3

Day 3 brought more excitement and a big surprise for the kids!  We started the day off by going to Rockefeller Center to take in the sights from the Top of the Rock.  We had debated over going there or Empire State Building but this was the one included on our pass so we chose to go with it.  We looked around outside for a bit but were unable to get close to the Prometheus statue because in the summer they have a restaurant patio that is closed unless you plan to dine there.

After milling around a bit we decided to head in to go to the Top of the Rock.  When we arrived at the desk we didn’t have to wait in any lines because we’d purchased the Sightseeing FLEX Pass for 6 attractions so that we could save money (Top of the Rock would have been $150 for our family) on the attractions we wanted to see.  It worked great going right to the elevator after less than 5 minutes time while our passes were processed.

The views were spectacular!  I couldn’t have even imagined how beautiful the city looks from way up high.  There are two sides to the Top of the Rock and one gives you a view of Central Park and the other gives you the view of the southern part of Manhattan.  Be sure to take along some quarters to put in the coin operated binoculars to get an even better view!  The observation decks were quite crowded but people moved in and out quickly so it really wasn’t a long wait and we got up to the glass to take our pictures.

After we came down from the observation decks we headed back to the hotel to rest a bit and get ready for the Lion King play on Broadway later that night.  The princess wasn’t feeling the greatest so she took a nap while we all cooled off.

When it was time to head out to the Lion King which was a part of the trip we kept a surprise from the kids we got back on the subway to Times Square.  When we got off the subway we tried to navigate using Google Maps and I have to be honest…I LOVE Google Maps for driving directions but walking is NOT easy using it.  I can’t count how many times we had to turn around because we headed out the wrong direction after starting out.

We got to the theater and made our way in.  I was happy to find that they had a place to check strollers so that we could still bring ours along.  They do allow bags to be brought into the theater and stored under seats.  The play was AMAZING!  We picked the Lion King because we knew that the kids would enjoy it and it did NOT disappoint.  The costumes and voices were awesome and I would highly recommend it.

After the afternoon play we headed down to Little Italy to eat a nice dinner.  We made our way through Chinatown when we got off the subway and decided it was not for us.  It smelled bad and trash was everywhere.  It was later in the day and we didn’t see any vendors set up just a few businesses with open fronts selling things including fish in pails of water sitting in the 90 degree heat…EW!

Little Italy was much nicer and the smells there were all delicious.  We chose Capri as the restaurant to dine in.  We ordered a Penne and Ziti dish and they were so good!  The bread served with the meal was equally delicious.  It was a bit pricey but hey it’s NYC and vacation!

When we finished dinner we walked around Little Italy a bit but then headed over to SoHo to do a little shopping as #1 son decided he wanted to find the Nike and Adidas stores to use his spending money.  We found the stores and cooled off from the heat while inside…did I mention it was HOT on our trip?

After shopping we headed back to the hotel to tuck the Princess into bed since she was still not feeling the greatest.  Once everyone was settled #1 and I walked around the corner to the Target to get some snacks and breakfast items for our stay.  It was so strange to be in a narrow city Target with a basement.  All the stores there were like that but it is so different from the Midwest.

All-in-all it was another wonderful day in New York!

 

New York City – Day 1

As we embarked on our week long trip to New York City we decided to stay in a hotel close to the airport so that we didn’t need to get up at 2 am and drive.  We stayed at the Crowne Plaza Bloomington, which we’ve stayed at before but not with the kids.  In the morning we parked in the Minneapolis Park ‘n Go…highly recommend. They were simple to find and a short ride to the airport. The driver was courteous and helped with bags when we arrived at the terminal where we boarded Sun Country flight 243 to JFK and were off!

When we arrived in New York we had to take the subway to our hotel which was a little tricky with all of our luggage but we managed and it wasn’t too busy on the train.  The train station was a few blocks from our hotel and getting off the train and going back above ground was quite mesmerizing, looking up to all the giant buildings around us.   When we arrived at our hotel, Stewart Hotel New York in Midtown Manhattan, they were able to let us check in right away.  Once we got our things dropped off and checked out the room we headed out to our first tourist activity.  Our hotel was right across from Madison Square Garden and Penn Station so it was bustling when we arrived.  We needed food so we got lunch at Sbarro…delicious and better than I remember when we had one in MN.

After lunch we found the subway station we needed, which happened to be right out the door of the Sbarro we were at, and got on the train again to Times Square.  It was only one stop to Times Square which was quite convenient.  When we got off the subway and walked into Times Square it was really neat.  Super busy because it was a Friday afternoon but we found where we needed to go for the bus tour we wanted to take and got on.  The beginning of the bus tour was fine but we quickly ran into a ton of traffic which took a while.  The 2 hour Hop-On Hop-Off bus tour ended up taking 3.5 hours!  The tour guide that we had was not good at all.  He was knowledgeable about the things we were seeing but he was scolding the police for not handling traffic, yelling at cars, and flipping off drivers during the traffic jam we encountered.  Not exactly the most pleasant experience but we did enjoy the sights.

Once we finished the bus tour we were thirsty so we stopped to have a smoothie at one of the street vendors.  It ended up being $36 for the smoothies which weren’t very good.  One thing to note is that most of the street vendors don’t list the prices of their foods.  I learned to ask the prices when we went up but most of them were pretty reasonable.  We walked back to our hotel from Times Square

Our first day I was quite surprised by the kindness of the people of New York.  There was a sweet man with a heavy NY accent who helped me carry Charlotte’s stroller down the stairs at Sbarro when he saw me struggling.  There was also a very friendly police officer at the subway station that gave me great directions for the train to Times Square, even telling me which car to get on so that we’d be right at the steps to exit in the middle of Times Square when we arrived at the next station.  I think New Yorkers get a bad rap for not being the nicest people in America but so far that has not been our experience!

 

Huntington’s Disease

To say that the past year and a half has been tough would be an understatement.  Our entire family has struggled to come to terms with what the future means with a Huntington’s Disease (HD) diagnosis.  In just over a year our family of 5 has gone from a normal, happy life to one where we need to think about things people in their 30s and 40s shouldn’t have to think about…like social security, disability and long term care policies.  We thought we’d watch our babies grow up together but that’s no longer a reality.

For those of you who don’t know about HD, or have never even heard about it, this disease causes the progressive breakdown of nerve cells in the brain.  It deteriorates a person’s physical and mental abilities and has no cure.  That’s right NO CURE!  It has been described as having ALS, Alzheimer’s, and Parkinson’s Disease all at the same time.  Patients struggle with personality changes, mood swings, depression, forgetfulness, and impaired judgement.  As things progress they will develop an unsteady gait, involuntary movements (known as chorea), difficulty swallowing, and slurred speech.  Each child of an HD positive parent has a 50/50 chance of inheriting the disease, but if that child doesn’t inherit the gene they will never develop the disease and cannot pass it on to their children. This means that each of our 3 kids have a 50% chance of the same fate.

When Mike first approached me to say he was having symptoms I was not expecting it at all.  I always knew that it was a possibility and deep down I felt like it was going to happen at some point but I think you push things like that out of your mind and even though looking back there were signs, they were overlooked.  I had no idea how much this disease would impact us and really had no idea what the whole disease was about.  I had watched my father-in-law progress through this disease but by the time I met him he talked only a little and could still eat and walk.  I never could have imagined the cognitive deterioration and psychological changes that would be encountered in the early stages of this disease.  In hindsight, the symptoms started many years before his diagnosis.

In the past year I have watched my able-bodied husband go from working full-time to not being able to work or drive at all anymore.  I had no idea it would progress this quickly. His cognitive skills have declined to the point that he can’t learn a new job that isn’t as taxing on his body as welding, which is what he did for the past 20+ years.  His brain gets stuck on a subject to the point he can’t let it go and it becomes an obsession.  There has been lying, deceit, and battles with myself and my children that never would have happened in the past.  The battles with our kids are generally over trivial things and his patience level is low when dealing with them.  I mean, I will be the first to admit that I don’t have the highest patience level but he used to be the patient one.  It is difficult for our kids to watch the decline of their dad and to understand why he behaves the way he does at times.  To the outsider he seems like the same old Mike, but living with him every day it is easy to see the changes and difficulties he encounters.

The cognitive decline has been very difficult to deal with and to watch.  Mike struggles with simple instructions, asks you to repeat things frequently, and constantly forgets things.  He can ask the same question 3 times at supper and have no idea that it’s already been discussed.  He used to make fun of me for making so many lists and he’d tell people that I had ‘lists for my lists’ (which is quite true) but he is now realizing the benefits of those lists and makes them frequently to remind himself to do things.  We saw an Occupational Therapist (OT) to help him with strategies to make things easier for him at work, etc and I felt so bad for him as the OT in training was going over all the tips and tricks he could use she came to the end and asked him which of those things he could use to help him…but she didn’t realize the irony in asking the guy with a short-term memory issue to recall what had been discussed and relay information from the discussion.

Mike’s physical decline does not seem to be progressing as quickly although he definitely struggles with the chorea because it sometimes keeps him up at night and makes it difficult to get to sleep.  His struggle with sleep has affected both of us and I have chosen to move my bed to the couch because it was becoming a vicious cycle.  Him waking up and struggling to get comfortable which woke me up and then he’d be afraid that he was keeping me up so he’d get up and go watch TV in a different room.  This meant that neither of us were getting enough sleep so it was just the simple solution.

This post is not meant to evoke pity but rather to inform the world of this awful disease and let others know that they are not alone in this battle.  It is not a journey that can be traveled alone and there are many wonderful people who have been there for us along the way already and I know many will continue to walk this path with us until the end.  I hope that at least one person can read this and find comfort that it’s not just you here battling this disease and feel a little less alone because it is a lonely battle but it doesn’t have to stay that way.

Disney Cruise [part 3]

Day 3 was going to be a super exciting day with our first port in Grand Cayman.  However it turned out we had hit a cold front, which we knew from the rough seas through the night, and we would be porting on the opposite side of the island than we were supposed to port.  We also had a snorkel excursion scheduled but due to the weather that was cancelled as well.  Disney made arrangements for transportation to the main part of the island once we got on shore from the ferry.  We rode a bus to the main shopping area of the island and did a little exploring.  We hit several shops and hit Margaritaville for a VERY expensive lunch that wasn’t even very good.  It was exciting to be in our very first foreign country and look around and show our kids a different culture…even though it is a very big tourist area so doesn’t seem ‘foreign’.

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