All posts by noahezra

When it’s more than HD

It started eight days ago. I woke up Monday morning, got out of bed, and couldn’t walk well at all. 

 Before that, with HD, I had only had balance issues but was walking fine. But last Monday I didn’t stagger or stumble or anything I’d ever envisioned I would do or had seen my relatives do. 

I shuffled. A Parkinson- like shuffle. Hard to put one foot in front of the other. Small steps. Not covering much ground. 

Two neurologists have told me that it can’t be HD. It came on too suddenly and has the wrong movement MO. I should investigate other areas. 

And I knew nothing about other areas. 

Over the past week, I have learned about Drug induced parkinson symptoms.  I have learned about Lewy bodies, just enough to scare me. 

Every day since it started, it has gotten worse. Today my doctor ordered me a wheelchair. By tonight my husband had to line one up to borrow so he could push me around if we had to go out before insurance approved my order. 

And by the time he had made that arrangement, my walking had deteriorated to the point that it was just alternating sets of toes clawing. Nothing else happens. He called to see if he could borrow, instead, a chair I could push myself around the house in. 

I had to use a makeshift bedpan tonight. 

My husband is mentally rearranging furniture to make the house wheelchair accessible. We are both silently hoping we can get a chair that is narrow enough to roll through the old bathroom door. 

We are hoping for the best but planning for the worst. I am being taken off meds that could cause effects like these and my MRI will be of my brain instead of my spine. 

I don’t know if, tomorrow, I will be able to walk or if I have already walked my last step. 

The one HD consolation prize, the gradual progression, has been ripped from me. 

And whatever this is, I don’t know if it is going to stop now that it has taken my feet and my legs. Is it going to work its way up my body and immobilize it all?

Is it going to have its own accompanying horror show of symptoms for me to dread, or will it take me out so fast I won’t have time to go there?

My husband and I are on our own in uncharted territory. I have something that is undiagnosed, swiftly progressing and, so far, has no known treatment. 

As well as HD. 

The spring fall

May is HD awareness month and my awareness of my own HD increased greatly when I fell on my a** Friday night.

I was allowing myself to be dragged to a play and just one more time I had wanted to wear shoes with a little lift. But I tried to walk backwards in them and that set off a slow motion, reverse fall to the ground.

I went to the play, but was too sore by intermission to stay.  It pretty much ruined everyone’s weekend because I was laid up with a bruised hip and not happy.

When I fell Friday night, my self-perception landed outside of me, like a camera, giving me snapshots of where I’m at now, in total:

Besides poor balance, I can’t remember life events. There are chunks of my life that just aren’t there and I don’t know it until someone mentions it.

I have trouble doing simple things like making phone calls.

I have unrealistic ideas and I expect things around me to be the way they always have been, but they can’t be, because I am getting so much worse. I can’t be treated the same way because I don’t act the same way.

The most insignificant things, like making simple choices, are huge, emotional deals that are liable to piss me off or leave me with hot tears of frustration.

Even thinking of reaching out to friends feels like running underwater, so I stop before I reach. I’m afraid I won’t reach them and if I do reach them, what is there left of me to connect with? I miss you, James and everyone else, and I am sorry.

Ever since Friday night, I’ve noticed that the memories I do have are from someone who existed two personalities ago. That the changes in who I am have been stark and permanent.

Today I have been overwhelmed by the notion that my family needs respite. That I have pushed everyone to the edge.

But they tell me no, today is a new day and things are OK and I am trying hard to let that sink in.

Because, with HD, the promise of a new day brings with it the promise that I’m slipping, I’m falling.

And worst of all, I’m becoming a stranger.

Mean living

I get angry then I get mean. It tastes bitter and I try to keep it in but I can’t. Then it’s too late and I’ve ruined something.

A reputation, a conversation, a relationship, an evening. A family.

The thing that made me angry and then mean is gone, but I am left alone with my meanness.

Nobody wants to be around someone who is mean, not even me. But I can’t get away from myself.

I am lonely and I want to be around other people but I am afraid of what I will do to them. If this time will be the time that I go too far. That I break a heart or burn a bridge too completely.

Being mean is the part I have feared the most. They told me that lots of people with HD aren’t mean. They told me that just because my mother was mean doesn’t doom me to meanness. They told me that my true, kind nature would be exaggerated.

They were wrong. And now I’m mad at them too because I bought into their wishful thinking.

Every time it happens, it is harder to bounce back. Every time it happens, I feel less of myself left.

I think back to when I was twenty-something and I laughed and jumped from rooftop to rooftop with my friends in our platform shoes.

That girl can’t ever come back, and I miss her.

 

 

A sample foray into the world

I went to the grocery store today. Even though I don’t like going anywhere, I went just the same. Parked in a handicap spot, mostly so I would remember where I parked, and went in. Then waited at customer service for ten minutes to find out why there were no NCAA championship T shirts at the grocery store mere hours after the victory. I kept asking people about the shirts and they would answer me. Then I’d run into another employee who maybe thought I was confused and I, not really wanting to explain that I was generally always clueless at the store, would ask about the T shirts again.

The answer every time was, “No, we’re not getting in any.”

Finally, a man too old to know about the internet approached me and suggested that I purchase them online, something I had never considered.

As a result, I was forced to focus on trying to get the hell out of there with something usable.

This grocery store, which I actually like, has a meal suggestion center. The center displays all the pre-fab fixings for a dinner and the sides right there in one cooler. All I have to do is take them home, let someone else cook them, or watch them rot in the refrigerator. Today, I bought Spanish style breaded pork chops and plantains. Everyone at home, including me, thought it sounded icky.

But it was a decision that was already made by someone else so I took advantage of it. Because making decisions is excruciatingly painful, and is sometimes enough to send me into a fine frenzy.

I wandered around the store next, looking for Mark’s favorite afternoon snack which is also the staple for when I don’t feed him. I knew what aisle they were on and what color box they were, but even though I’d bought a million boxes of them, it didn’t register that they were Hot Pockets until I saw them. But seeing them, I knew for sure and shamefully picked up a box and put it in the bottom of the cart.

I was really hoping the pork chop idea would fly tonight.

It didn’t.

Everyone had leftover anything.

 

Stamina, or lack thereof

Mornings are when I function the best. I work better. I am more likely to leave the house. I am usually in a good mood.

Things have a tendency to change after lunch. At first I thought it was because of the heavy meals I was eating, but then I stopped eating heavy meals and was still pooped after lunch.

Then comes the question: To nap or not to nap? Usually I nap, but sometimes I don’t. Either way, by four o’clock I am spent for the day. Ready to take some prescription to head off the inevitable irritability. My brain is tired and my body doesn’t want to move.

And then everyone comes home.

That’s no way to spend a life, I think. I am spent before I get to be with the people I want most to be with.

And what have I left them with? No dinner. No clean house. No accomplishments to show them.

Only a tired, cranky shell who wants as little stimulation as she can get.

That’s no way to be a mom or a wife.

If only they could go to work and school while I’m sleeping at night, like real world elves.

They could come home and find me at my best, and, because they are elves, they would never be tired or need to sleep.

And we could frolic the way we used to.

It will be just like that split second years ago.

The joyous, resonant moment that I still base my “normal” on.

 

 

DIY HD getting-through-the day kit

Let me tell you about my latest coping mechanism. A steppingstone in my quest to minimize the frustration of the progression of HD.

I got the idea from the people in the ATT store. They have these cool Apple aprons that they use during their shift. They can transact entire deals using the content of those aprons. Except they would not sell me one. So I had to go online.


For the past weeks, during my daily life at home, I have have had notebooks in every room with the same dates and notes written on all of them but haven’t been able to remember that I had written anything.

I have been in a state of not knowing when things are happening no matter how many alarms I set for myself and emails.

Also,wherever I go, I have wished that I had certain things all together with me, like my phone, reading glasses, something to jot things down on, etc. It is an infuriating cycle that repeats daily.

I was spinning on the heavy duty cycle of confusion one night when I happened to come across the item pictured above on a Facebook store. I think it was New chic but am not certain. It definitely came from China and took its time. It was only 15 dollars US so I bought it.

It came yesterday and I have been experimenting with it as a tool to get me through the typical day. The bag sits comfortably over my front and has room for all the items I listed above that I need to function. There is also room for an old fashioned calendar. There is enough room to keep a portable battery in it so I can charge my phone wherever I am. There is enough room for a kindle fire. If I were into using earplugs, there’s an orafice for the wire to go through from the bag to my ear. It has lots of pockets. And when I go to the bathroom I can just sling it over my shoulder and it is out of the way.

I am going to use it this week. Just wear it around from the minute I wake up until bedtime and see what other things might come in handy. Like maybe an emergency bottle of antipsychotics or some moisturizing eye drops.

It has room on either side for small bottles of water but I drink from enormous containers and I think negotiating the smaller bottles and straps could challenge my fine motor skills and I want to eliminate challenges.

So far it feels like a cross between carrying a baby in a sling and wearing a fanny pack that I can see and reach.

I already know I want to have an HD info card in there. I have emergency numbers.

I will let you know how it goes and if it is useful. Please suggest anything that you might think could come in handy.

So far so good.

Experimenting with expectations 

A lot of things haven’t been playing out the way I had expected them to and I have displayed behavior that was disproportionately severe relative to the various situations. 
I complained about this to my kicka$$ therapist, and she asked me a question that I am putting to use going forward. 

She asked: “Who put you in charge of what is supposed to happen?”

She got me with that one. 

 I have been putting myself in charge of the “way things are supposed to be” by having rigid, inflexible expectations. As a result, I have been mired down by disappointment, impatience, and sometimes anger. 

Therefore, I have been working to separate myself from assumptions and expectations about outcomes. 

I just performed an experiment on the airplane I am flying in as I write this. The flight has very few passengers, so after we boarded, the flight attendant welcomed people to move to unoccupied seats to stretch out. I urged my sleepy eleven year old, Mark, to move. But when he tried to, the same flight attendant told him to return to his seat. He was a little embarrassed which was enough to set off my pressure cooker and I went into a silent fury. 

I waited for my chance to get the flight attendant’s attention and I had planned to spew angry words at her. She was lucky she was not around for a while and so was I. 

Because, while I was stewing, I happened to remember what my kicka$$ therapist said. I was making myself in charge of the outcome of the seating incident. I was going to say fiasco but it was not even that. I backed up enough to make myself wait to see how things would turn out if I did not verbally assault the flight attendant. 

The flight itself turned out to be turbulent. When the flight attendant finally did walk by, we hit a bump of air and she had to grab the overhead compartment. Mark asked if she was ok. 

“What did he say?” She asked me with a tired, absent look. 

“He wanted to make sure you are OK.”

I was barely able to get the words out before her whole body language changed. Her face bloomed with a smile and she zeroed in on Mark. 

“What is your name honey? Do you want some cookies or pretzels? You can go back there now and sit. I had just told some grownups they could go before and there’s still room for you.”

This is what happens when I remember that I am not in charge of the outcome and I just accept the way things play out.

I plan to look for other field experiments. 

The slow fade

It doesn’t feel slow to me.

It feels like I’m being pulled in by the undertow over and over.

Miles out.

Into a dry ocean.

My thoughts are duller and they no longer fall over each other. There is starting to be space between them.

The level of oblivion I have towards daily life is something I have to try to sneak outside myself to measure. I have stopped cooking. I seldom use the car. I have stopped engaging with others unless I am directed to or am scheduled to. I know that there’s a lot of home improvement that I want to happen, but either it can’t happen soon enough or I don’t have faith it will happen at all.

The emotions I feel the most are impatience with myself for not being able to do anything right and regret when I hurt people.

The collection of memories and facts I’ve forgotten has outgrown its habitat. It needs an island of its own.

I sound like I’m drunk and people on the phone who don’t know me are put off by it.

And my brain is too thick with obstacles, too sick with HD, to be written about with any great insight by its owner.

What other people see is a slow fade.

But I can’t describe how fast I am becoming an empty vessel.

A remnant of myself, clinging to stay, bobs up every now and then.

Like a cork in a turbulent, empty ocean.

 

Reconciling a life and a disease

The days are tumbling on top of each other following the death of my mother who had HD. I never was able to visit her as much as she wanted me to. Even when I visited her every day she would barely let me out the door. Even when she was yelling at me, she didn’t want me to go. She wanted the connection. I moved away, my own HD progressed and I became less capable of making the 90 minute drive.

Then she started calling me, literally hundreds of times a day. She would sit for hours and hit the redial button and when I would answer, she would ask me when I was coming to visit. When my support system got wind of this, they insisted that I block her calls so I could try to get something done during the day and not have my heart broken every time I heard the despair in her voice and felt the specter of what could befall me. I told her I was having trouble with my phone. She sent me a few letters begging me to help her, but I confirmed that she was safe and being well taken care of. The letters stopped and I visited as often as I could.

At a certain point, long before her final days, she had decided that she wanted to consume me. I don’t know if it was the same dynamic as the time I was drowning and as people kept trying to save me, I climbed up their bodies, plunging them further down into the water. But for years I have felt her sickness manifested in a need for something from me that I could neither identify or satisfy.

Until she died, I carried an enormous weight of guilt because I thought that I wasn’t there enough for her. That I couldn’t see her or help her. That I had failed the one who had failed me the most, and by doing so, I had blown both of our chances for redemption.

Now even though she is gone, I still have a sense of her being. The memory of her unforgettable presence lingers and, more and more, I remember snapshots in my life from the times long ago when she showed me love.

But the oppressive guilt has lifted. I am realizing that I did the best I could based on my own condition, and that is more satisfying knowing that she is released from her diseased body and mind and no longer desperate.

Now it is my turn to live out my days and, while I have plans, I have adjustments to make to improve my health. I am formulating safeguards to protect my kids from what I went through. I am already having conversations with them about blocking me if I perseverate on the phone calls. And I am conveying my unconditional love to them the best that I can.

But I mete it out in small doses, because they are teenagers and I do not want to freak them out.

50 Happy Things 2016: Bloggers Unite to Flood the Internet with Gratitude

Dawn Quyle Landau, blogger of TALES FROM THE MOTHERLAND explains how it works:

“The idea is that you set a timer for 15 minutes and then spontaneously list 50 things that you’re either grateful for, or that make you happy… generally the two go hand in hand! All bloggers are welcome, and the link-up is a fun way to share good feelings–– Something we could all use right about now!”

You can get complete instructions from Dawn’s blog entry.

My list (not in order of importance) is here:

  1. I have LOST SEVENTY POUNDS so far!
  2. Randy is the greatest.
  3. I have great doctors and therapists.
  4. I got to spend time with Nina in the mountains and Florida.
  5. I got to go to the WeHaveAFace walk and see and meet friends who deal with Huntington’s Disease.
  6. I am still driving.
  7. My animals make me happy.
  8. I can still work at my part time job.
  9. I can still walk pretty normally.
  10. My HD is the late developing kind.
  11. I still keep this blog.
  12. MaryAlice came to the HD Paddle from NJ.
  13. My oldest son started college.
  14. My youngest son discovered his talent for basketball.
  15. My middle son is applying for colleges.
  16. I got to see my niece and nephews and their grandmother.
  17. I am friends with my brother for the first time.
  18. I got to see my mother two weeks before she died.
  19. My mother spent only a couple of months in a nursing home.
  20. I am remembering good things about my mother from childhood.
  21. The Gilmore Girls.
  22. Sushi.
  23. Don and Susan at Herbalife for their support and friendship.
  24. The happiness of Vana on her great adventure.
  25. Getting to know my wonderful neighbors better.
  26. The desire to plan things, like trips.
  27. My house.
  28. The help my neighbors have given us with the landscaping.
  29. That I had Bell’s Palsy instead of a stroke.
  30. That I now have lots of baseline tests done as a result of 29.
  31. Meeting Chelsea and Dave.
  32. Every interaction with DK and Jocko.
  33. Coffee or tea in the morning with Randy.
  34. (Insert activity here) with Randy.
  35. Laughing.
  36. Music.
  37. Making my house better.
  38. The City Laundry coffee shop and club.
  39. Almond milk.
  40. Water.
  41. The king size fluffy blanket I bought the day after the election.
  42. The reclining couches.
  43. Good TV shows and watching them with Randy.
  44. I can sometimes make dinner.
  45. I made most of Christmas dinner.
  46. Randy finished Christmas decorating after my mother died.
  47. Randy helped me go through 20 years of clothes, try on and throw away things.
  48. Randy organized the bedroom and I love it.
  49. I have a bedrail so I won’t fall out of bed in my sleep again.
  50. As soon as I purchased incontinence supplies, I did not need them.