Sunday, March 1, 2015

Sunday Stroke Survival: To Sleep Perchance to Dream

antique postal card
As many of you might know, I haven't been able to sleep too many hours in a row for the past few months. This is mainly because of my husband's medication schedule. He is now on 45 mg of morphine every two to four hours. The schedule is exhausting and I suffer quite a bit of sleep deprivation.

As a result, I don't dream. At least not that I can recall. So Shakespeare's line is lost to me. There's a couple of things to be said for not dreaming. I don't have nightmares which is a good thing. But my subconscious mind does not get a chance to work through the stresses of the days or weeks either. This is a very bad thing. The stress has nowhere to go to seep out into conscious mind for me to deal with so it just builds up.

There's also the chronic fatigue I've had since my first stroke. If I sit down and stop
moving for fifteen minutes, I'm drifting off to sleep. Usually, at my desk, but other times across the foot of his bed or the rocker by his bed. None of these places give a restful sleep that my body craves. Another problem of napping like this is the odd positions I find myself and jerking awake a half to an hour later. My spasticity has loosened somewhat thanks to the dry needling, but jerking awake causes the muscles to spasm up tight and I'm groaning like an old woman.
Like this

One time I found my paralyzed arm wrapped behind my head. When I jerked awake a spasm hit so hard my arm was stuck behind my head for half an hour. Granted, it's a good tricep stretch, but not fun when the medial bicep is in spasm. It was down right painful! By the time it was over, it felt like my shoulder had dislocated. It hadn't, but the arm was exhausted and over stretched. I spent several hours with bags of frozen peas on it.

There's also critical thinking that is impaired when dealing with this kind of schedule and lack of regular hours of sleep. This can be dangerous because I'm running errands, shopping, administering drugs, cooking and assorted other things during my awake hours.  Besides my normal forgetting what I was doing and why I came into this room in the first place, there's the stopping in the middle of prepping the salad to stir a pot and forgetting about the salad totally. Driving to therapy at the new office but driving to my old therapy center instead.

And no, this is NOT me!
But with the judgement lapses I'm always erring on the side of caution like forgetting what the speed limit is and driving 5 mph slower than the rest of traffic because I can't remember that the reduced speed section is five mile farther down the spur. Yep, I've become that little, old lady that can barely see over the steering wheel, but I'm in a van. The one other people yell not nice comments to as they pass. If I really am too tired to drive... I don't. It can wait until tomorrow if I risk hurting myself or others. Common sense rules.

No, I haven't totally gone without a six-eight hours of sleep for months. I have caught a few breaks thanks to my children or grandchildren every couple of weeks. I can premeasure a dose or two of liquid morphine for someone else to administer. Or, my husband could give it to himself if the need arises. I always predraw the next dose as a matter of habit. All it would take is once being too groggy and killing him with an overdose. I'm careful that way. You can do all sorts of crazy things with lack of sleep.

Someone asked me once why hospice didn't order Fentanyl patches for him. Of all people, it was my sister the RN. I told her, "Doh! You have to have body fat for it to absorb into." He has the ideal body of zero percent body fat. It's just rolls of skin over shrinking muscle mass over his bones. There is nothing or no place with even a smidgen of body fat to place the patch. He also has tried an increase of his long acting morphine tablets that agitated him so bad that I was ready to leave him after three days of abuse. We are discussing adding Methadone to his morphine to boost the length between the liquid. But right now, it working the way it is. If it ain't broke, don't fix it. Although, I'm doing without sleep.

To top all this off, my Botox is wearing thin so the spasticity is back. Not totally thanks to the dry needling, but it is making sleeping comfortably troublesome. It seems that just when I get into a comfortable position, I'll have to pee or administer drugs. Not really, it just seems that way.

My next series of this poison is the middle of March. I'm hoping for an uneventful series unlike last time. My dry needling therapy hasn't progressed as well as my fellow strokee and needling buddy who plans to forgo his Botox series. But then he's three treatments ahead of me. In my mind, this does not make sense because I'm only about three years post stroke and he's seven years out, but every stroke is different. Oops, did I just say that?! Yep, I did and my spasticity is worse than his...not that I hold that against him. I'm happy for him that it's working so well. I'm just not that confident or brave yet.

So in the mean time, I'm doing without restorative sleep for the duration. I'm sleeping only enough to keep from having severe sleep deprivation. That would be a waking nightmare, but...
Nothing is impossible with determination.

Thursday, February 26, 2015

I'm About to Bust With Joy!

So I went for my dry needling today and the therapist said he was starting with my leg. The therapist hit all the major spots causing my inverted foot to "shut down" the trigger point. I have to admit it did sting a bit because of the sheer size of my calf muscles and I let out a gasp or two before my controlled breathing took effect.

He took a measurement of the inverted foot of 32 before he started and a reading of 13 degrees of inversion after hitting about a dozen spots with the needle. To me, this was amazing. I joked with him about him turning me into a masochist because I kept asking him to do it again because I'm seeing and feeling results. Heck, I'm even paying him to do it to me. I know sounds kinky, doesn't it? You should hear the sounds coming from the room as I instruct him to the spot with the needle...
  • "A little bit deeper."
  • "You're just missing it."
  • "You're getting warmer, warmer, that's it. It's on fire now."
  • "That's it. You're almost there."
  • And then, the painful sigh and a catch in my breath when he hits it.
Now that really sounds risque. I can only imagine what the people hearing me are thinking. But this kind of feedback helps both of us in hitting the exact trigger point of the spasm.

Anyhow to do my leg, he placed a wedge with the flat side against my buttocks and my legs sort of traveled down the incline. That way he could manipulate the leg to get all around it. I also can't see what he's doing. Not that it matters much. He talks me through it. I did warn him about the hyperactive reflex response that my chiropractor found. I'm glad I did because he hit one spot and I just missed kicking his ear.

He then moved up to the arm for stretching and needling. I did notice that he is getting less response now that the Botox is truly gone, but can still manage supination of the wrist with the elbow straight. It just takes more work to get it in that position.

As he needled on my bicep I noticed my foot drifting into its old inverted pattern. I was willing it to stop and go back to almost straight again. Most times it is a bust. I only think it can move but it doesn't. I always visualize to action I want it to be in even when it's passive movement on my part. I thought my foot moved into an upright position. I could have been imagining it though since I couldn't see it.

The therapist stopped poking me to get another needle. I asked him to look at my foot and sure enough the foot moved from inverted to straight. "It moved!" Then there was a flood of questions. Had this ever occurred before? Could he video tape it? etc.

This was the first time since my stroke I was able to move my foot out of the inverted position without physically repositioning it. He asked me to do it again for the camera and of course, the foot wouldn't comply. Twice was the limit, but we both expect it to occur more with practice and more needling. I'm begging for more at this point. I'll endure however many needles it takes for this kind of progress.

Now I'm shouting it from the rooftops! Post stroke spasticity? Try dry needling!

Thursday's Tumbles and Stumbles: Computer Woes

As the title suggests this week's major stumble was my computer. My hard drive crashed. ARGH!!! Now I have other computers in my house. Four to be exact, but the one that crashed had most of my novels in progress on it.

Now normally, I'll back up my hard drive religiously, but of late, "normally" doesn't belong in my vocabulary. Unfortunately my pictures, book covers, most of my knitting patterns (40 patterns), Kindle for the PC with all the downloads (52 e-books), and works in progress (12 books and stories) were not on my back up. It has sickened me for the past three days. This included 45K words of my Don't Get Your Panties in a Wad and my Illusion of Tranquility novelette that I was using for example in Compuserve's Books and Writers Forum. I have a printed version of all my other books just not that one. Why they weren't backed up, I have no idea. Double ARGH!

I did manage to get my computer up and running again, but my keyboard suddenly developed a "Nah, I don't wanna type that letter anymore" syndrome for ten keys. So I undid the screws intent on taking it apart to clean the inside. Have you ever tried prying two pieces of plastic apart with only one working hand? I gave up after fighting with it for three hours and grabbed my antiquated keyboard from the turn of the century. This sucker is ancient by computer  keyboard standards and it's three and a half of my hand widths across, but it does have a USB connector.

I have misplaced my Microsoft Word program disks. It had all the bells and whistles to it including Publisher. I've only switched desks four times and computers once since I've seen it last four years ago. I'll find that eventually. But I'm really not writing anymore these days so there is no hurry. There's probably five programs I have to find the CD/DVDs for. I had a blast just trying to remember all my bookmarked internet sites. I still haven't visited half the sites to rebookmark them.

My computer had been sluggish for days. Probably a virus or other nasty that Norton didn't catch. I even used the power eraser to find it to no avail, but it did behave better. I finished streaming a movie and hit the back button to reload the previous page and my screen went nuts. It powered itself down. After dinner, I tried to reboot my computer and got the ominous blue screen telling me the hard drive had crashed. I've spent days recovering what I have so far. This is as bad as moving to me AND I HATE MOVING!

The good news is that I haven't been sitting much. But then again, it hasn't been by choice. The computer tells me it needs this or that and I'm off to fetch it. And, I thought the demands of a dying husband had me running. Stroke recovery is a breeze right now in comparison of recovering three years of lost data.

Until next Thursday when you get a new dose of my Tumbles and stumbles...CYA later! Bet you'll make sure your computer is backed up right after this, won't ya.

Tuesday, February 24, 2015

Redefining Disability Project: Post # 18
When you see this picture, you know it's Tuesday and time to answer another question.

18. Have you experienced preferential treatment because of disabilities?

Yeah, I have...
  • I get to vote by absentee ballet, or the earlier than election day. I have been permanently excused from jury duty because the chairs cause me back pain. Not to mention I used to be a police officer and know 90% of the attorneys in town. 
  • We get audited by the IRS and State Tax people because of my medical deductions almost every two years and, get a bright, shiny star for my efforts in keeping my receipts and documentation.  
  • I have a nifty, blue placard that I can hang from my rear view mirror that let's me park close to the entrances of places. 
  • That placard even allowed me to get a specialized/vanity license plate on my car too. At no extra cost to me. All because of my and my husband's disability.
  • I'm allowed more time to do things in general. In fact I get tired of people telling me to take my time.
 Imagine that! Yes, I'm trying to be funny. Most disabled folks have the same thing.
All kidding aside...
  • I have strangers offer to get or carry things for me. Actually the baggers in the  stores don't count in this instance.
  • People hold the door open for me most places I go. This is both a courtesy and a royal pain because most of the time I have my cane hooked on my arm and am using the door to balance myself as I go through.
  • I've had strangers ask if I wanted to go ahead of them at the checkout line.
But then again, this is the south with more genteel folk too. Even when my disability was invisible to
their eyes, I got this sort of treatment too. But I have watched customer service geared people tend to be more helpful and understanding when I ask for help now that I'm visibly disabled.

I'll be the first one to admit, as a transplanted northerner, that things are different than I'm used to. It truly is a slowly pace, manner, and language here. But I love it and claim it as my own except when I travel north of the old Mason-Dixon line. You'd figure with as many snow-birds and transplants would dilute the standard south, but you'd be wrong especially with the aged population like me. The young whippersnappers may mimic their northern counterparts too much. But I digress.

Preferential treatment may come my way because of my disability or my advancing age. Is there much difference between the way you treat the disabled or any person you view in respect...not that all disabled people are respectful. Some are down right cantankerous. I rarely am.

I don't mean to preach here. Well, maybe I do because I'm a minister, but I've always believed in treating people like you want to be treated. If the roles were reversed, I would still offer to help others. In fact, I still do when I'm able. I also believe that life runs in concentric circles. What goes around comes around. If I ignore someone in need, there may be a time that I need something and am ignored.

A prime example, my husband's hospice services. I've had my ups and downs with this service since I started on this journey a year ago with my husband. I know most of the employees. I've married them, counseled them, and just been there for them for the past.

Well last weekend a group of employees volunteered to come to my home, and clean up and reorganize it for us. I had tears in my eyes when my husband's aide locked herself in the main bathroom with a pressure washer and blasted all the tile work clean. This was something that needed to be done. How the employees, who understood my husband's condition, used only Borax, vinegar, and dish soap to clean with so he didn't have any adverse affects. How I was watched and asked where would be the easiest places for me to reach and what was the hardest things for me to do. I was treated with respect. Not just because my husband was a client and dying, but because they honestly wanted to help.

We were not singled out for preferential treatment because I was disabled. Yes, my husband was their client, but I found out from my sister and my daughter that they do this all the time because they care. All they have to know is that there was a need. After a year of being in and out of my house, there was a definite need. This truly is a company which stands behind their slogan of "Enriching Lives."

Do I believe I'm entitled to preferential treatment? Nope. To me, I'm still capable of giving so much and will continue until I draw my last breath. Does that sound like a contradiction to what I said about what goes around comes around. Nope, but it is nice when it happens. I expect nothing and get everything, but I always remain hopeful.

Sunday, February 22, 2015

Sunday Stroke Survival: The New Therapist and Dry Needling

I'll bet y'all were wondering about how the new dry needling therapy was going. I haven't done an update since I've started it.

There was no doubt in my mind that my Botox was winding down prior to these treatments. My bicep, pectoral, and radial muscles were cramping and my range of motion was no longer gaining neutral positioning during stretching. That's with my OT at the hospital rehab doing all the work. The spasticity was returning.

My new therapist is a short and muscular sort of man with a cheery disposition. He has a Scottish brogue in his speech with a slight southern accent. Quite charming actually. I can understand why he and my speech therapist married. They share understanding, compassion, a genuine willingness to help others, great sense of humor, and a thirst for knowledge traits. They both are not afraid to tr ew things if it works even if he is NDT trained. People after my own heart. He is also the clinical director of his facility. Anyhow, I like him.

We spent a lengthy amount of time talking about the procedure and the science. Most of it was about documenting the journey, would I mind? Mind, me mind, don't make me laugh. If this works, I'll be shouting it from every rooftop and flooding the internet. He told me that there wasn't much information or documentation about how dry needling works for spasticity for post stroke patients.

I knew that from my own research. He was realistic about the outcome of the procedure and asked if I would mind being video taped for documentation. Eventually, he would get together with other practitioners and publish the results.

I went into this with an open mind with the hope for success tempered with possible failure as voodoo medicine as my old therapist called it. I rarely shot all hope in the foot or sabotage possible success. I am, after all, the hopeful realist. I am honest enough to reserve all judgement until after all the facts are in...that's one of the reasons for the delay in this posting.

He video taped me before he did anything for a baseline. I told him if he really wanted  baseline, we should have waited for two more weeks when the Botox was almost all the way out of my system. But he said this would work, and then he took me back into the treatment room. He mentioned me changing into a gown, but I pulled off my sweatshirt and showed him my tank top. I came prepared. Too many previous therapy sessions in the past.

My arm is more or less locked in a 45 degree angle due to the spasticity. It can be relaxed to almost straight at the elbow with enough gradual stretching. Unfortunately, it does not last more than thirty minutes and then the spasticity draws it up again.

He went to get his "bag of tricks" as he called his tote with needles and alcohol swabs. I've had acupuncture before so I knew what the needles looked and felt like going into the skin. I've also had EMGs before so I'm well aware of what those bigger needles and the fire they cause when they hits a spastic trigger point. And, I do mean fire up and down from the point of impact.

I've often said that a line of open communication was the key to getting positive gains. I also believe in getting every cent's worth of every dollar I spend. I explained this to him before we started. He almost seemed relieved, but he talked to me throughout the treatment anyhow. "Is it too much?" "Can you handle a bit more?" became a mantra of sorts in that Scottish brogue of his.

I felt him go through a vein and bounce the needle off a few bones a couple of times.That's how this differs from acupuncture for those that say this is just a glorified acupuncture. It's more like an EMG except once the needle hits the spot, it is manipulated in and out into the trigger point a few times. I can feel the muscle spasm immediately relax. Instant gratification as it is.

He did a couple of trigger points and then stretch the muscles. Each time he stopped needling and stretched, he got more and more of a response. It was fascinating to watch as if it weren't my body at all. But personally, I was amazed at the amount of movement he was obtaining. I left that first appointment in a state of shock.

The effects lasted until my next appointment a day and a half later. I walked into the rehab office with my arm fully out stretched at the elbow along my body. In fact, I've added tricep building exercises to my daily exercises to combat my arm falling without control.

So we started again. He asked about any after affects to the dry needling. I had a couple of small bruises from where he went through a vein, a little bit of nausea, and the painful muscles were relieved by a couple of bags of frozen corn. I found eating something helped the nausea. So now I eat before treatments and no more nausea. Also, drinking 16 ozs of water also helps eliminate the spasticity causing agents after the treatment.

This time he hit my steel traps (trapezius muscles) in my shoulders to allow the shoulder to move more freely. Mine are always tight because that's where my stress centers. He also focused on my wrist and hand.

Again I watched amazed as he moved my wrist to more than neutral, which hasn't happened since the spasticity set in (over two years ago) and my finger straighten with my arm outstretched. My other OT could only manage the fingers outstretched with the elbow bent. I'm loving the results! I'm finally feeling optimistic and excited about therapy again.

This was all great and good, but would it last? Only time would tell. This second treatment was on a Friday and my next treatment was on Tuesday. By Monday, I could only get 90 degrees of supination in my wrist instead of being able to lay it flat against my desk palm up. By Tuesday morning, only 45 degrees of rotation. Okay, it was only the first heavy duty focus on the wrist and hand. It could take several treatments or at least that's what I read.

I greeted my therapist with a, "do it again!"

I now leave his rehab place with a smile on my face. I'm getting the response that I'd hoped for. Am I at the point of shouting it from the rooftops yet? Not quite yet. Now when I get long lasting results, you better believe it. We are both optimistic while keeping our feet firmly on the ground. As for now, I've found a spasticity and pain relief method that works in between Botox. But another stroke survivor and friend has decided to forgo his Botox at least for one series. I'll keep you posted on the results.

Nothing is impossible with determination.