Hard reset

My husband noticed it first. When I learned to walk again, my stride was longer than it had ever been before. Before I forgot how to walk, I trailed behind him on walks. Now he can barely keep up with me. 

But improvement has pervaded many areas of my life. I am exuberant, capable, and joyfully doing things I previously was unable to do, like grocery shop and cook dinners. Eager for errands and outings, I now say yes instead of no. I am present in the moment and I sparkle. 

My best friend Nina said it best in this text she sent me this morning:

“Good morning! Idk know what has happened to you but I want you to know it has made me know that miracles can happen. You are the Sarah from before and I can see the happiness in your eyes. I also see you are appreciating what has been given back to you and going full force with it. Take those dancing lessons or whatever else might interest you. Thanks for the visit from your extraordinarily family and renewing my trust in miracles.  Your bff🦄❤️”

I don’t know what has happened to me either but it seems likely as anything else that my brain had sort of a hard restart and my abilities got reset to a previous, more gloriously normal, level of functionality. 

And I am grateful for all of it. 

It was worth the time in the wheelchair, the ensuing medical bills, if this was what came of it.

You just never know why things happen. 

Sometimes, like now, I am getting a glimpse of a divine reordering. I am standing under the flow of life and transmuting energy into joyful, grateful existence. 

I am embodying the energy that was returned to me and going with it. 

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Like riding a bike

I have never had to re teach myself riding a bike, but I was re taught how to walk by a very skilled and insightful physical therapist.

And now that I know how to walk again, it’s as if I never didn’t walk.

Except the memory of the past few weeks hangs fresh like some freaky nightmare right now.

I expect it will fade.

But the joy I felt when I took, at age 51, those new first steps, the happiness I feel because I don’t ever want to sit down or lie down or turn down any invitation to go for a walk again.

That’s something I hope I’ll remember. Here’s a video just in case.

It’s called apraxia

My brain tells my legs to move but they don’t act on the message. That’s what the doctors said. The jury is still out over whether it is due to HD or my brain’s response to some upset. The only way I’ll know is if I get better.

Usually people with HD who have apraxia have it in their arms instead of their legs. In fact, in my limited research thus far, I haven’t found any documentation on apraxia and walking and HD.

I am really grateful to the readers of this blog who encouraged me to seek medical attention. That very night, my husband and I went to Duke Hospital and have just returned today.

With a wheelchair.

But also with a long running set of appointments with a physical therapist who is going to teach me how to walk again.

Apparently, I will be more successful if this is not HD-related.

Therefore, I am praying that I can re-train my brain and walk again soon.

Thanks for your prayers and support.

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.