Sunday Stroke Survival: Spasticity and Botox Again

My next series of Botox injections is May 1st. So is it any wonder the effectiveness of my Botox is wearing out. I hope upon hope with each series of injections that the effectiveness will carry through until the next appointment, but I'm literally sorely disappointed. The spasticity returns full force weeks before the next series is due. Not that the spasticity disappears with the Botox, but it brings the pain down to a dull roar and the tightness into manageable levels where some movement is possible.

Keep in mind that mine is not the average spasticity that quite a few post stroke survivors suffer with. It isn't sporadic episodes, but a constant bane to my existence of living post stroke. It is classified as severe spasticity. There no cure or treatment that works 100% for anybody. Heck, they (the researchers) are still trying to define it. It's that different in everyone stricken with it. So there isn't even a sure definition for it.

But from my standpoint, it's clear as crystal that the muscles tighten involuntarily, and then cramp. These cramps can last from several seconds to hours. Of course me, being Ms. Abby Normal and Ms. Overachiever, the cramping has to go on for hours around the clock. The only thing that saves me from nonstop agony and crying is my dry needling sessions. Unfortunately, I would have to have dry needling three times a week to keep the spasticity from worsening when my Botox wears off. I'd be in debt up to my eyeballs at $45 a session during these periods. I think even Bill Gates would have a problem with this kind of bill looking at the expenditure for the rest of his life. I'm not a spring chicken or even a fall hen any more, but still I have quite a few years left in me. I'd kind of like to live out my life as relatively pain free as possible without being drugged out of my gourd, wouldn't you?

I'd love to not have needles poked into me up to a hundred times a dry needling session also, but it's one of those love/hate relationships. It's where you tell the physical therapist to "hurt you good" so you aren't in continual pain from the spasticity. It's almost like a sadist/masochist relationship where no sexual pleasure is derived just pain relief.

My inside elbow after dry needling

I'd love not to look like a junkie (drug addict) from all the bruising that can be the results of dry needling too.  Within hours my arm will look like pictured. After 24 hours, all the nice black bruising is evident. Yes, I ask for it. Heck, I'm even paying for them to do it to me. How desperate is that? Like a junkie I have to have my dry needling fix to keep moving.

If there were one drug I could take to stop this cycle, you know I'd be the first in line for it.

But there isn't one. So I accept this treatment as a last resort. It's the only way I've found that works and keeps me moving. If it wasn't for the spasticity being so bad, I'd almost have full movement again. I can voluntarily straighten my elbow, open my right hand and straighten my fingers, with strong concentration, with the full Botox and dry needling. From week 2 after Botox to week 4, I can do this. It's slow going but I have voluntary movement on command. But I gradually lose function after that. As you can imagine, I work the Dickens out of my arm, and fingers during that time in the hopes of strengthening my weak muscles to combat the spasticity. For the past two years, I've been on this cycle of excitement, and then frustration. But still I'm fighting. It is tiring. Frustration does get the better of me, but I keep at it.

My inverted right foot and foot drop still makes walking difficult. After two years of dry needling I haven't progressed farther than one step without my AFO, but I'm still working at this too. I've noticed that the calf muscles have decreased in size over the past year. A loss of muscle mass is always concerning, but it can be gained back with time. My right calf is about half the size of my left. It's not because I don't work both calf muscles, I do. It's because of the AFO. Only half the support of my body is actually done by those muscles. But then again, I've always had very muscular thighs and calves from weight lifting in the past too. I may on occasion lift 50 lb bags of feed now, but it is a rarity rather than the norm these days. I've got a Mel for that.

I'm just going to have to work my right side more to build the muscles back up.You've heard of the One Hit Wonders? I'm a One Step Wonder. The ankle is weak and wobbles. My foot will actually bend and be locked into a greater than 70 degree angle of supination without the Botox and dry needling. Oh, and my toes? My big toe will point straight up and the rest of my toes will curl under. Try bearing weight like that! If it wasn't for my knee and hip being artificial already, I'd be worried about the continual strain they'd be under. Even so, my muscles holding these joints are strained with every step I take. Does this stop me from moving under my own power? Nope! I'm enjoying every moment I can on my own two feet. Every day I try standing and taking steps without my AFO. One day, I might just be surprised and take off.

Until then, it's Botox and dry needling.

Nothing is impossible.

Sunday Stroke Survival: Spasticity Treatments and Results

Well, I had my latest round of Botox this week. This time with my new neurologist. He had mentioned in our initial meeting that he may try something different than my old neurologist. After a little discussion, he decided not to be adventurous because my maximum dosage was only 400 mg. Better to hit the spots that work.

I must admit I was a little bit disappointed, but he explained that even though he was basically hitting the same spots, he wasn't my previous neurologist. His technique and depths may be different. You can read what others have done (general areas) and still perform it differently. He did add that he was going to request/argue to get a higher dose of Botox out of my insurance carrier. He'll have a fight on his hands, but as my momma used to say, "never say never." After all, my insurance company also had a steadfast policy against another AFO within three years, and we know how that turned out from my previous blogs.

Although personally, the idea of putting even more of this toxic chemical in my body is not my first choice. But with the relaxation of the spasticity, I improve in function and ability. If another 50 or 100 mg. of Botox will reduce my spasticity enough to improve my elbow flexion, my index finger and thumbs mobility, or even straightens the inversion of my foot where I'm able to take even five steps without my AFO, it's worth it.

I've been doing dry needling for over a year now. In the beginning I was having treatments three times a week (upwards of 100 needle sticks between my arm and leg a session). The effects last 25 minutes to a couple of hours. Speed forward a year and a half, I have needling done once every two months on my leg (often only 3-5 needle sticks) and lasts for almost two months depending on where I'm at between Botox sessions. It's lasting that long and my foot is flat on the floor each step instead of the increased pressure and weighted step towards the outside edge of my foot. (This is what caused all my pressure sores the first two years after my stroke) 

A year and a half ago, my arm was clenched into my chest, the wrist was greater than 90 degrees, and the fingers didn't move. Again, fast forward to present time. Right before my Botox session, My arm rested at 45 to 60 degree angle. A far cry from at almost 180 degree angle it had before a Botox session. Even better, I was 5 degrees off from full extension at the elbow the day before the Botox. The wrist is still stubborn, but mostly because of the wrist contractures. The same goes for my ring and bird fingers, but my thumb, index and pinky fingers can be straightened into a sign language "I love you." I can even hold that position now for about 5 seconds after a good stretching session. I can move my thumb and index fingers together in a pincer form although it takes me a few minutes to do and a whole lot of concentration. I'm pretty well exhausted after doing it twice. The spots that get dry needling now, my steel traps (trapezius) once a month, my bicep twice a month, my pectoral and shoulder blade every four months, my triceps about every three months. My lower bicep, my elbow extenders, lower arm, wrist, and hand now only require WEEKLY visits. (Less than 25 sticks) How's that for progress?

My drugs have been a consistent juggle. Between 40-60 mg of Baclofen a day instead of the 80 mg I was up to. It depends on when my Botox wears off. Most days, it's 40 mg. I tried to drop the dose down to 20mg a day because I felt so good, but my body let me know the extra 20 mg per day. The Zannaflex is down to 8-12 mg per day instead of 16 mg. Again, it depends on how my Botox levels are. Most nights, it's 8 mg because it helps me sleep more comfortably. I eliminate the daytime dose. The Valium, I was on 5-10 mg. I can't even remember when the last time I took it. The really good thing, I was on Cymbalta and Lyrica for my fibromyalgia. Now, it's just Cymbalta. So less drugs and less pain is always a great thing. Better for my body and my pocketbook.

Yeah, it's been a while to reach this point. But like everything about recovering from stroke loss... it takes time. How much time? Who knows, but what else have I got to do? Anyhow...

Nothing is impossible.

Sunday Stroke Survival: The Effacy of Botox and the Autumnal Slump

Tis the season...for Botox semi failure. For two years in a row the autumn series of Botox only has limited effect. In talking to therapists and other stroke survivors who receive autumnal injections, they stated I'm not alone in this. Although there are no studies that document this effect, alas, it appears to be fairly common.

I'm left wondering why this is. Is it weather factors? It is chillier. For us down south it's a damp chilliness. The kind that seeps into your bones. Is the arthritis flares that make us perceive an ineffective results of the shots. It's a possibility. It could also be an age factor affecting the injections. But why only autumn? Why not other times of the year?

All I know is that this Botox series is a bust. The spasticity in my leg and arm have had little response to the Botox. So I can expect no improvement or recovery of the spastic muscles. It means no forward progress and I strongly dislike this. I always strive for progress, don't we all? While my arm no longer draws up into my chest like it did before the dry needling, the wrist is cocked at greater than  90 degrees. The best I've managed to straighten the wrist is 45 degrees. The hand is also in a light fist and the fingers will extend to 45 degrees, but it's a constant battle to fight the spasticity.

I should count my blessing though. While my muscles contort into these extreme positions it is only mildly uncomfortable now because of the dry needling once or twice a week. I do have to admit that skipping two weeks of therapy will cause the spasticity to get progressively worse. Three weeks between sessions my arm will slowly rise and lock into my chest. So dry needling has a hold over affect that is lengthening with treatments like I first read.

My dry needling buddy, who I've talked about before, has almost a two-month carry over effect between sessions now. He is now Botox free. I know I'll get there too. Considering how bad my spasticity is, I'm lucky to have any hold over effect at all. To have a two-week hold over is better than the 1-6 hour carry over that I had in the beginning. There are less and less active trigger points which causes problems which is excellent. For example, my bicep has almost no trigger points to hit so we are now working on the forearm, hand and deltoids. My traps are still a problem but getting better. They are no longer my steel traps, but more like lead (tough but malleable). Considering both of us have been in this study for post stroke spasticity for less than a year, we remain hopeful of ending this cycle permanently. I would honestly consider our response as positive results.

 By narrowing my view of what success is, I can maintain hope. Small strides or baby steps. When I look at the big picture, I could make myself seriously depressed. Small blessings focus has been my saving grace. Each blessing, no matter how small, is a stride forward. So in the autumnal slump of the Botox series the blessing of not being in the agonizing pain of full fledged spasticity is a greater blessing to focus on. Judging by last year, my winter series should have me on the track of positive, forward gains again. Three months to wait isn't long compared to the almost three years of no progress. I can take heart in that.

Nothing is impossible.

Sunday Stroke Survival: Botox Again and the Benefit of a Teamwork Approach

Had my usual round of Botox injections last week. Still at 400CCs of the poison for my spasticity. My hopes of doing away with them entirely with dry needling is still a distant hope. There's just too much high tone in the muscles to do without it totally yet.

In talking with most of the stroke survivors I know, they complain that their neurologists or therapists are useless. Offering little or no help at all. I'm happy to say that I cannot relate to this.

 Part is due to, I believe, is God's blessing and part in my attitude of looking at care/recovery providers as employees. If you have a medical provider that is not on the same page as you are in your recovery, why are you paying them. Yes, even if you are on Medicare or State Assistance, you are still paying them with your tax dollars. Now if you are in a small town, you may not have a choice, but where I am there are four or five of each specialty to choose from. Even if there only two, there is the lesser of two evils in a choice. Keep searching for a health care provider who thinks that it is possible to recover. That's what you really want, isn't it? I know I do.

I've often sung the praises of my neurology and therapy teams here on this blog. They believe like I do that nothing is impossible. They show they care about me and listen to what I have to say. This is important. It's called teamwork. Everyone is on the same page to get Jo to recover as much as possible. So what if my brain is telling the muscles to move in the wrong way. How do we fix it? How do we make it behave like it should? What can each one of us do to have a successful outcome? When I'm with my doctors or therapists (in this case) THIS is what we are talking about. When one of us hears something new, we bounce possibilities around. This is what I expect from my health care team and will accept nothing less, and why should I? Get on the same page or get out. Isn't this the way it should be?

This time around we had a change up. I asked both my therapist and my neurologist if the other could be present at my Botox session. Even though doctors get reports on their patients in therapy, it's not always the same as seeing it. My doctor was curious about dry needling because she hadn't heard of it before I started talking to her about it the beginning of this year. My therapist had never seen EMG driven needles for Botox before. So both were curious.

Shameless plug

My therapist is also supposed to make marketing calls on doctors to boost referrals for his company also. I understand the marketing aspects companies can demand and have often discussed this with my therapists not to mention achievable goals or progress for patients for insurance companies to keep patients on the roster. It pays to think outside the box when dealing with paperwork. It can cause them to pull most caregivers' hair out.

For me, being able to hold and carry things with my affected arm is a positive achieved goal, even though it is still not voluntarily mobile. For me, it's a huge achievement. To have limited control to do that is a giant leap forward and I can do it at will now almost all the time.

So my therapist marked the time of my appointment as a marketing call, but I benefited from it greatly. My therapist was able to discuss what he was doing with me and goals that he'd like to work on in the coming months. My doctor bounced ideas off him in order to hit the right spots with the Botox to make it possible.

While previously the main concentration of spasticity in my arm was in my upper bicep and pectoral muscles, the dynamics have changed with the dry needling. It is now the lower bicep and forearm that is the most spastic. The upper bicep and pectoral muscles have shut down in spastic movement. So guess where most of the injections took place. You got it.

Now, I know I'm extremely fortunate to get the meeting of the minds for my benefit. It all comes from the approach and being able to look at a problem from outside the normal. I make a point of surrounding myself with the outside-the-box thinking folks. Not so far out of left field to be truly strange, just a little avant garde. So who won? All of us. The neurologist learned first hand how to help her patients. The therapist was able to get a new referral source and learned more about patients having Botox. And lastly me, everyone is on the same page as far as goals and procedures for my benefit. It's a team effort.

If your doctor or other medical personnel are not working for you, find ways to work in your benefit. If you can't, replace them. Don't you deserve the best possible outcome? Can I get a "HELL Yeah!"? It may not happen overnight. For me, it took six months worth of schedule juggling to make it happen. But I think it was worth it. All you have to do is ask.

Nothing is impossible.

Sunday Stroke Survivall: Voodoo Medicine

Credit

Voodoo medicine is a term coined by my old occupational therapist as any treatment not sanctioned by the powers that currently be. Alternative medicine such as herb use, yoga, meditation, and even dry needling fall into this category. They are alternatives to the normal operating procedures of western medicine. They are often discounted by modern medical types, but the facts is that it was practiced and worked prior to modern medicine. Modern medicine had to start somewhere.

I was a medical professional, but did not discount anything but embraced it. I studied far eastern schools of thought because of my upbringing in a Japanese-American household. The fact was it worked when I couldn't visit the modern day medical types. It broadened my horizons as it were to see outside the box of strictly modern medicine for treating what ails you.

While I was in college studying modern nursing techniques, I was also studying German lithographs of herbs. In childbirth, I used Lamaze (focused breathing as in meditation) instead of the ever more popular drugs which crossed the placental barrier to my waiting to be born children. Later, I went on to to be degreed in holistic practices also herbatology and aromatherapy. I've practiced yoga (not the exercise) for decades. When herbs became an over the counter quick fix in this society, I was the one cautioning the wide spread uses of St John's Wort screaming about the side effects to anyone that would listen to name just one.

Don't get me wrong. I still believe in modern medicine, but only modern medicine...nope. I consider it a personal triumph when I convert or broaden the mind of a modern medicine professional. Because the fact is, it works. It still does even after centuries of use.

When I first heard of dry needling as a treatment for post stroke spasticity, I reserved judgement and kept an open mind. Luckily for me, my neurologist and her nurse practioner were willing to try anything that would help. At that point, Botox was only working marginally well for my spasticity. The drugs therapy was only lip gloss covering a cold sore even at the maximum allowable doses. All I wanted was relief and they wanted to help me get the best possible outcome. Even though it was considered voodoo medicine and a throw off of acupuncture/trigger point injections, we were all willing to try. As a result, my neurologist now has a new alternative therapy to offer her patients and she does.

A WORD OF CAUTION
To me, it doesn't pay to be narrow minded.  But too broad of a mind without knowledge is a dangerous thing. The FDA allows herbs and minerals beyond everyday vitamins to be sold without much guidance to be sold as dietary supplements in this country. In other words, anybody can buy and take them. But there are reasons you need prescriptions for certain herbs in various countries. They are considered medicine. All medicines have side effects and contraindications even herbal supplements. For example, do you know which chemicals are water soluble or fat soluble? That fat soluble chemicals can build up in your body to toxic levels? That a single herb/plant/root/seed can have up to 300 chemical compounds in it? Scary when you think about it, isn't it? That's why I say without knowledge, this can be a very dangerous thing. SO DO YOUR OWN RESEARCH TOO.

It's funny how one thing can work for one and not the other, but while we are all homo sapiens as a species, we are not all the same. The term alternative medicine is just a way of saying..not what is considered as modern medicine. Each is unique, but the same. Granted modern medicine has a lot going for it, but being the only choice for what ails you, not hardly.

Nothing is impossible.

Dry Needling and Updates

So starting last week I began going to my dry needling sessions again. It's two weeks until my next Botox series of injections. I took approximately a month off from dry needling because of my husband's impending death. So this past Monday I went in for my second dry needling session. Between the Botox wearing thin ( the spasticity is back), my fibromyalgia flaring up, the anniversary of my mother dying, and just general stress of my husband dying, the funeral and just living post stroke has really taken a toll on my body. I'm hurting everywhere. I imagine stress has been a major contributing factor.

The down side of dry needling is that when you take a month off, as for me, the positive effects wear off. The deadened trigger points come alive again. But you have to remember that I have severe spasticity too. I'm not blessed with episodes that only last an evening, but the kind that lasts for days unless something intervenes to stop the process like dry needling. I don't even want to imagine what it would be like without the three muscle relaxers I'm on.

With all the events happening in the past couple of weeks, I was back to taking my full doses of muscle relaxers again until I was free to do the dry needling again. I was even taking pain medicine over the last week just to manage four hours of sleep.

Anyhow, back to Monday's session. Like most stroke survivors, I'm on a blood thinner. It's been downgraded from Coumadin to Plavix. Yeah, that's progress for me and my high platelet count. I'm just warning you because the picture I'm going to show you of my lower bicep, inner elbow, and inner forearm looks bad. It actually doesn't hurt much at all.

6 hrs after needling

All those red dots and bruises are needle insertion spots. Yes, my arm was so tight it took over thirty insertions with the needles in this area to stop the cramping, restore full extension of my arm, and stop the associated pain. That's not including the insertions into my upper bicep, deltoids, trapezius, or lower down my forearm and thumb, or my leg. I had over two hours of fun just to stop the pain and restore some movement. It was well over 100 spots by the time my therapist was through. But I finally got some needed relief. Each insertion gave me a little bit more relief each time. So it was well worth it.

I'm still a firm believer of this type of therapy.Dry needling has brought me relief when I should be in agony right now. Now for a shocker...I moved my thumb and index finger on command yesterday. It wasn't much but it's a start.

This week I spent two hours on the phone with Social Security this week trying to reapply for disability. The major change is that I'm now attempting to get spousal benefits. The interviewer said that I should get an accept/deny/ or request for more information letter about it in THREE months. I'd like them to try and live like I will have to for three months without income. He then followed up with it could possibly take A YEAR or so to be decided. Ya gotta love the bureaucracy at work.

It's a good thing the life insurance and our pre-planning will kick in within 45 days or I'd really be in trouble. With my book sales in a steady decline and no new titles to offer, I'd really be stuck. I believe in being prepared as much as possible.I just have to be patient. Ugh! There's that word again...patient.

As far as my grief process goes, it's been strange. I'm actually more relieved by my husband's death than miserable. But maybe it's the lull before the storm. I'm not in denial because I know the love of my life is beyond my reach. I miss him. There's moments in my day when it will hit me that I can't get a arm rub of encouragement from him and it hurts. But it's not as devastating as I thought it would be. I doubt my love for him because of the lack of this, but then I'll shove that aside because he was my soul mate. Maybe because I saw him in so much pain and wasted before he died that I'm thankful he isn't here like that. He was so sick for over a decade. Now if he had been the man he'd been the man I'd married, I would be honestly grieving. Without a shadow of doubt in my mind. Maybe this is God's Grace to me.

I had my son in law rip out the wood wheelchair ramp this week. It was a hazard with me hanging ten on it every time it rained. We've had almost daily thunderstorms since Spring. I had been avoiding the ramp like the plague since the last time I fell. As he pulled up on the edge where it was attached to the cement, out poured a sea of red and black carpenter ants. It was even worse when he finally

pulled the ramp all the way off and exposed the nest full of eggs. All the ants were scurrying around. Each one grabbing an egg to carry. I spent the next three hours with a can of ant spray and doing the one legged squash-the-ant dance. I still didn't kill them all. This would not have been possible if my beloved was still alive. The chemicals in the spray would have irritated his breathing. It probably didn't do me any good either. I had a nagging headache for two days afterwards. Yeah Jo, poison the ants and poison yourself too.

That leads me to question, why is it that an amputee can hop one one leg, but me as a stroke survivor can't? Try as I might, I can't hop on one leg without losing my balance. How about it other strokees, can you or am I just Abby Normal again? Maybe I'm just to old to do it. Nah, that can't be it.

How has your week been?

Sunday Stroke Survival: Dry Needling- The New Hope

It seems I can't quit talking about dry needling. It has been my greatest blessing so far this year. It has almost consumed my blog since December 2014 and I first heard about it for post stroke spasticity.  Yes, it is still considered "voodoo therapy" as my old occupational therapist calls it. There are no concrete studies to categorically prove that this works for post stroke spasticity  patients. Studies are currently being done. BUT for me it's working. That's saying a lot!

Before the dry needling, my spasticity was BAD and almost constant even with 400cc of Botox (350 units in just my arm alone). When the Botox wore off before the next series of injections, I was in horrendous pain. Try bending your wrist with finger clenched into a fist, and then cock it inward until you fingers touch your inside forearm. Now bring the whole forearm up to your chest and hold it in that position. Bet you can't do it for long.

My spastic, post stroke arm

That's how bad my muscle spasms were. Not for minutes. Not for hours. Not for days, but think weeks. To move it more than a couple of inches away from my body was near impossible not to mention painful. Imagine how much fun it was putting on a simple shirt. It brought tears to my eyes and blood from my lip to keep from screaming each and every time. Even with the Botox my wrist would only straighten to mid line (straight) with my therapist using force and my elbow bent. I've never been thankful for my Clonus, but the clonus is now back in my wrist and I'm glad to tolerate it.

This picture (below) represents my progress to date. With the therapist still doing all the work because my wrist and hand are still spastic and they are paralyzed (no voluntary movement). Keep in mind this is with the fingers stretched out to the first joint and the elbow is straight. I also have dry needling twice a week.

Blue-1st session. Red-4th session. Green-5th session

I'd call this progress! This new treatment modality is firing up motor response neurons that haven't fired in two years since the spasticity set in almost nonstop. He (the therapist) isn't really pulling hard to hold it in this position either. He is also able the do the other range of motion exercises too. The best part is I'm NOT in pain any more.

In March, my dry needling therapist started working on my inverted foot. On his measurement before the needle sticks in the trigger points, the foot was inverted 32 degrees. to give you an idea of what that looks like I pulled this image from biology-forums.com.

Credit

After ONE session and about a dozen trigger points hit, the angle of inversion was 10 degrees! Better yet, As I felt my foot drifting back into the inverted pattern, I MOVED it back straight! My foot is not paralyzed. Granted I was only able to do it twice, but it's a start. Last session was five times, so there is improvement. The muscle is strengthening and the neurons are rewiring. I continue to do the exercise program Amy suggested.There is hope that one day I will walk pseudo-normally without my AFO again. I say pseudo-normally because I do have a hip and knee replacements on my FUBAR (If you do not know this acronym look here) er, um, non-functioning leg.

Me doing the Snoopy dance!

After every session of dry needling, I'm sore and exhausted, but exhilarated at the same time. New pathways are being awakened in my brain. I'm seeing results rather than the passive (on my part) stretching for therapy. I mean for the most part it's passive on my part during these session, but I'm focusing real hard on making the limb movement while he's doing it.

These days I've added the quantifying word "when" I get this or that part back. That a big boost. It's wonderful not having your muscles saying "Go this way!" "No I want to go that way" like a couple of kids fighting over which way to go...because that's really what spasticity is. Now when my spasticity is gone, I can start recovering.

A couple helpful tips if you are considering this treatment...

• You will need a referral or prescription from your doctor if the person doing the treatment is not one.
• Call every doctor, chiropractor, pain management, rehab place in your town to find out who is certified to do this procedure. If there is more than one, shop each one and go to the one you like the best.
• Is there a therapist who is training or awaiting their certification? Offer to be their practice dummy. I know that the National Institute of Health (NIH )offered some studies but they may be complete now.
• Wear loose clothing. Easy on and easy off. You may have to change into a gown.
• Take a shower before the needling. Common sense. Even before your first appointment. Don't be surprised if the therapist wants to start needling right away.
• Designate bags of frozen peas or some such vegetable to use as cold compresses for the first 6 hours after a treatment. You are stretching muscles you haven't used in a while and the needling spots may bruise and/or swell.
• Drink plenty of fluids after your treatment. I eat before a treatment to dissipate the nausea I'm prone to.
• Medicare and some insurance companies may pay for this treatment is listed as a modality or treatment therapy. Talk to the business office. Nine times out of ten they will know how to word it for coverage.

Nothing is impossible with determination.

Thursday's Tumbles and Stumbles: Dry Needling Finally!

As you may have read a few weeks ago, my dry Needling PT had to return to Scotland because his mother had a bad turn health wise. Well, she passed on to Glory so my appointment was postponed until the 20th. I was in limbo between my Botox injections kicking in and the next scheduled appointment with my therapist. As a result my spasticity returned to where my elbow locked into a 45 degree angle and my foot inverted enough to raise a sore, reddish spot on my foot, it did not rupture. Thank God, but it did make getting about a bit more difficult. The elbow locked with spasticity almost nonstop was a far cry better than it being tight against my chest so the dry needling is working.

Also as a result of my therapist working to release my steel trap (trapezius muscle in my shoulder), it worked so well that I began noticing the tightness of the other side. More like a chronic ache more than pain. My trap on my affected side was still tightening, but not near as much as my unaffected side. Mind you, I'm not complaining. It's just an observation.

The spasticity wasn't even back square one when my therapist came back which is a HUGE blessing. So I'm hopeful that maybe this new therapy for my spasticity will work for the long term. At least that's what I'm praying for. But honestly, just getting full relief of any sort has been a blessing. I've struggled with the pain for far too long. You just can't imagine how liberating being free of pain really is unless you've dealt with chronic, long term pain.

An update on my hubby dearest, Spring has sprung with a little bounce back. He has lost another pound. :(  But in spite of that, he's in good spirits. He even played a game of "Go Fish" with our 13 and 8-year old grandsons last week before he had to rest.

This past Monday, he asked if he could sit outside on the front porch. This is the first time in 18 months that he has actually been outside the house for more than five minutes. It's been in the 70s/low 80s here during the day. So it is Spring. The No-See-ems (gnats) were out in force once the sun set though. Yeah, I'm allergic to those too with the same kinds of reactions as to mosquito bites. So I brought him inside again, but he was relaxed and almost chipper. He was also ready for another nap. The fresh air did him some good because his skin was not the usual gray colored.

He asked if he could go for a drive sometime next week. No, not him driving. I just have to figure out how to get him into the car with his oxygen with only one hand so I'm glad her's given me a week. He hasn't been for a drive since I brought him home from the hospital 18 months ago too. I mean gasoline prices here have dropped from almost $4 a gallon to $2, but everything else has doubled in price since then.

I'm not hopeful at these signs of enjoying life again by him. I fear it's the high before the crash. I've seen this too many times before. But I can revel in it while it lasts.

Credit

My BFF, I've got only one, lives in New York. Don't get me wrong. I have friends and a few very close friends, but she is my only best friend for life. We've been friends since 1968. It was about the only time I went a full year in an American school when we met. We became fast friends, pen pals, confidant, and a host of other things despite the distance and years.

We never saw each other again until 1977 and I was pregnant with my oldest daughter. But even so, we were the same fast friends. What our dads called "gaggy girls." It was like no time had past. I spent two days reminiscing with my old
friend. To date we haven't seen each other since, but the letters, phone calls, and emails traverse the country back and forth.

Well, she suffered a stroke last year with no permanent damage. Once again, the emails flew. In January, she had another stroke. She was lucky and unlucky with the second. Lucky because one she survived, and two only minimal sensory damage. She was unlucky because she now suffers with aphasia. While she can actually speak the words aren't coming as easily as before and tend to be disjointed.

Now I wouldn't wish a stroke on my worst enemy let alone on my BFF. But, once again we share in this. She's older than me by a couple of months, but she calls me wiser. Why? I've always been able to break things down so they make sense to her. By me having a stroke first this time, I can help her heal, understand and recover. But in the meantime, I can give her love and support just like I always have. Who knows, maybe we'll see each other again in the future. Until then there's emails and Facebook.

So how has your week been?

Thursday's Tumbles and Stumbles: The Lump

I'm happy and relieved to report no tumbles or stumbles in Murpheydom this week. At least nothing major, that is. So now a story...

"Honey, can you come check my back for me? I feel a painful lump back there and it's hard," my beloved asked me this weekend.

He's only has about 10% muscle mass and the rest is just skin over his skeleton. His wrist is less than six inches now. How do I know? The breadth of my left pinky to my thumb tip out stretched is six inches. Well, I can wrap my hand around his wrist and overlap my pinky finger with my thumb.

But I digress...
I walked over to his bed thinking now what? I was mentally running through the would of-could of-should of ignoring my own advice of don't borrow trouble. Don't I already have enough trouble in my life? 

Had he been bitten by some creepy crawly? Had it been after the aide and I changed his clothes the day before? We both do a through skin check on him. Could it have festered into an abscess so quick?

Either way it had to be drained and dressed. Depending on how big it was, I might even have to call the weekend duty nurse for a different antibiotic. Maybe whatever bit him was still in the bed with him? I'd have to catch it and kill it after seeing exactly what it was so I'd know how to treat my hubby.

I unbuttoned his shirt sleeves and his shirt. I'm inching it off him in case whatever bit him was still in his shirt. Nothing. No redness that I could see. "Reach your hand back and show me where it hurts?"
He did and I'm searching all around the area. I'm poking and prodding none to gently looking for a bite or abscess. Nothing! I asked him to point it out again and he did.

Then it dawned on me that the lump that he was feeling was his vertebrae! When I told him he just shook his head in disbelief. So I was borrowing trouble for nothing. I taped abdominal pads up his spine so it formed an upside down "T" from his hips up to try to prevent the bones from breaking through the skin. The added padding also makes him comfortable.

So no creepy crawlies, no abscess just care and comfort issues. I'm in a holding pattern waiting for the 17th when I have my next dry needling. My Botox should be kicking in about then too. So it should be interesting to see what happens.

My arm hasn't drawn up into the usual pinned against my chest position. In fact, it is still resting comfortably on my leg. Yippee! I've had one episode of spasticity this week and it lasted an hour. I've had no reaction to my reduced amount of Botox either. So I've been good. Still no more voluntary movement of my foot either. Shucks! Not that I haven't tried but the muscle tightness is preventing it. So I'm waiting on St Paddy's Day for more miracles. So with the luck of the Irish behind me and faith in the Father holding me up, I'm literally waiting on pins and needles.

How has your week been?

Thursday's Tumbles and Stumbles: Murphy's Law Strikes Again

You know the old sayings of, "The best laid plans of mice and men," and Murphy's Law's, "Whatever can go wrong will"? That's been my week. I've had one stumble after another in the what things should have gone on. This week is mostly about me.

I've been delaying my decision on whether or not to have my regularly scheduled Botox series. Mostly out of fear because of last time. I mean I've lost the little bladder continence I had and went full time in pull-ups due to the bladder and kidney stresses due to an infection. I was on the verge of kidney failure. The resulting infection also caused my bladder sling (implant) to fail. It actually ripped a piece of my hip muscle when it broke loose causing six weeks of pain and an unstable gait until it healed. Yeah, I was scared of it happening again.

Personally, I hate procrastinating because it always seems to come back and bite you in the rear. This time, as usual, it did. I knew my Botox injections were scheduled for the middle of March. It's always between the 5th and the 20th...except this time. It started with me not being able to find my appointment card. It's only been three months and it's not like I have an uneventful life. No problem, I thought. I could just call the office an get it. Well, I did. My appointment wasn't for next week, but for Wednesday! As in two days. I kept the appointment.

After the successful result with dry needling of my leg moving on Thursday of last week, the spasticity returned full force by Sunday. I wasn't disappointed. It was expected. I actually gained a day of freedom from the spasticity so I was rejoicing. Because of an office inservice, I didn't get a chance to make this week's appointments. Monday I called the rehab place to set them up, or so I thought.

My therapist had a family emergency and had to fly to Scotland. He won't be back until the 16th. At my query, nope, nobody else was certified to do the dry needling in this town. Or, even in a 100-mile radius.They asked if I wanted to see regular therapist for stretching. I'm technically a new patient, they don't understand that my arm and leg do not relax enough once the spasticity sets in full force like it is now. My spasticity post-stroke isn't a sometimes thing that causes pain and muscle tightness like it for some very fortunate survivors, it's almost constant without Botox or dry needling. Think Cerebral Palsy spasticity. I have brief moments during a day when my arm isn't drawn up to my chest in spasm. So at the present moment while I wait the one to two weeks for the Botox to take effect or dry needling I'm in pain constantly.

Not that I blame my therapist for abandoning me. If roles were reversed, I would have dropped everything if my mom gad needed me and was at death's door. What am I talking about. I did do it when it was my mother. So I totally understand.

On another front, my hubby decided he was no embarrassed by wearing pull-ups last weekend and decided he wanted to wear regular underwear again. I really can't blame him either. If I had my druthers, I wouldn't be wearing them either.

He had been doing well about using the urinal and bedside commode. No accidents or added work for me. [Dum, dum, dum] Murphy's law strikes again this weekend. He had a major blowout of the bladder and bowel type again. Made worse because all of the weight he's lost makes his briefs two sizes too big. So the briefs caught none but getting soaked through. Why does this always seem to  happen on the weekend when hospice was on short staff? As if, I'd really call them for this even though I could.

I got him cleaned up, in fresh clothes and bedding. Of course, all this commotion increased his pain and anxiety levels so it was more Ativan and morphine. Not to mention mine as well. My past demon of drug abuse raised its head but a quick prayer slayed it.  Even after thirty plus years of being dry, the demon still haunts me whispering in my ear the same old excuses, What could it hurt?...Just one time... It's available, why not?...You could use it...You deserve this break. I flicked that little demon off my shoulder once again. Yes! Victory! I took an hour nap as a reward instead. He took a two-hour nap. Needless to say, my hubby is in pull-ups again.

He also lost another pound this week. I had thought he was doing well by maintaining 92.5 lbs. While he's teetered around with a half pound for a month now (gain and loss), I didn't expect a full pound when I got him up on the scale.

Strawberries are in season now and the store has them on sale so I've been making him strawberry shortcakes as snacks. Think of a cake soupy with whip cream, strawberry sugar syrup and pureed strawberries.  Of course, he's got his three bags of chocolate a week too. I really stocked up after Valentine's Day and will again after Easter. There won't be another candy holiday until Halloween. I'm still making him eclair cakes in between. Yes, I do feed him regular food too. In fact he dined on home made Salisbury steak, mashed potatoes, and green beans yesterday. Today's menu is BBQ chicken, potato salad (made from leftover mashed potatoes), and my homemade corn relish. I still try to make meals tasty and interesting in spite of it being toddler food consistency for him.

So that's this week's doom and gloom report. How has your week been?

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!

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.