Sunday Stroke Survival: Great News for a Change!

I hope y'all celebrated the 4th of July and your independence yesterday. I know I did.
I've been doing the Snoopy dance of happiness this week.  Here's the reason why...

1)The latest scan of my thyroid cancer say it's GONE. The chemo kicked it's hinny right out of my body again.

2)I went to my Vascular surgeon for another scan of my right carotid artery. The report was the artery is less than 70% blocked so no surgery is required. He doesn't need to see me again for a year.

3) I saw my cardiologist for the results of my echocardiogram. My numbers looked so good that he doesn't need to see me again for 6 months! I've seen my cardiologist every 3 months for the past 5 years. He told me whatever I was doing to keep it up.

4) I saw my PCP this week also. It's been a whirlwind of appointments this week. I was in his office just two months ago for my six month check up, but my insurance company requested a physical be done now.  So we chatted/griped about insurance and big pharma. LOL He went through the motions again for a "physical." He said what he always does which I love, "Call me if you need me."

I still need to see my neurologist in two weeks for my standard six month check up. Now that the quarantine has been lifted I need an order for PT again. I also want to schedule Botox again. I desperately need some relief from the spasticity even if it's only 45 days out of 90. It's a stop gap measure until I figure out what else there is. Atlanta is still too hot with COVID-19 to even consider getting another baclofen pump. Not that I've decided to get another one.

I see the endocrinologist it late August about my gone again thyroid and my hypoglyclemia. My A1C on Monday was 4.2. I'm eating 6 times a day already. Maybe she can tell me why my stroke caused my pancreas to go from dead to kick into hyperdrive. No other doctor including my old endocrinologist knew the answer. Maybe, just maybe. I guess I should be thankful for not giving myself two to three shots of insulin a day like before my first stroke in 2012.

So y'all joined me in the Snoopy dance of happiness, won't you?

Nothing is impossible.

Sunday Stroke Survival: Living Post Stroke

In ten days it will be my 8th anniversary of my first stroke. This time of year I tend to evaluate my recovery that I've made. This is hampered my reoccurring strokes since my first one setting me back to almost square one with each new stroke. They effected the left side of basal ganglia part of my brain like the first one. I have to say it is old hat and quite frustrating.

But then again, I'm extremely thankful the new strokes didn't happen in another part of my brain like affecting my left. functioning side. I'd really be in trouble then, wouldn't I? I'd be up the creek with paddles, but no functioning arms to paddle with. Anyone who has suffered multiple strokes on both sides of the brain can attest to this.

In the last year of living post stroke, I've had a baclofen pump installed which worked beautifully. I was winning the war against the progressing, constant post stroke spasticity. This is before an infection caused it to be removed. I spoke to the neurosurgeon who did the placement last week via telemedicine. There was no way I was driving to Atlanta with it's over 4,000 active cases of COVID-19. I'm just saying. He asked if I was ready to have a new unit installed. I told him that again I was dealing with thyroid cancer. Can you still call it thyroid cancer if you no longer have a thyroid gland? I dunno. He was shocked but let me know when this virus thing was under control and my cancer was gone, that he would make himself available. That's good to know. I'm still n the fence about it. I mean dying and all, it has my thumb wavering between yea and nay.

So my post stroke recovery progress was hopeful, but ended up being nil.

Having said that, I made progress and gained confidence in trying new ways to adapt. I've taken over the full garden again. So I'm not only the one that prepares and preserves our food, but produces it as well.  My corn, green beans, and English peas are up and growing in the garden. I'm already cutting radish greens, lettuces, and spinach. I did miss my homegrown salads so much. I made it down and back up the twenty foot, 45 degree slope picking up kindling for our wood stove this winter without my cane. I only fell once, but I got up and continued. I've got my 5th new AFO fitted. I ended up buying my shoes for the first time since my stroke. GRRR! I only walk with a slight limp without all the rockers. Only slightly unbalancing, but not bad.

I've lost the battle with my post stroke spasticity and the pain is back for now. The war is still raging on. There has to be an answer out there.  One that won't cause major problems like dying. My neurologist told me they now have a neurosurgeon who can perform the same surgery with the pump in Athens. It's still 60 miles from home, but it only takes an hour to drive there instead of two to three hours to Atlanta. But I "love" my neurosurgeon at Emory. I don't have to make that decision for a few more months. Who knows, maybe it will be a mute point in the end. Time will tell.

I'll keep this short and semi-sweet this week. I'm back in full gardening mode.

Nothing is impossible.

Sunday Stroke Survival: How Easily We Forget

I am now 5 weeks post baclofen fill up and 6 weeks post op. It's good and bad. I thought I was pretty much healed from the baclofen pump placement. It wasn't painful, just an occasional twinge every now and then to remind me when I over did or twisted too far. I was doing great. I was very slowly getting back to normal. Or, what normal was before the pain associated with my spasticity reached unbearable levels. Even my trapezius muscles in my affected shoulder settled to aluminum traps instead of steel traps lessening my headches.

How could you stay mad at this face?

One evening, Kassity, our 45-lb puppy, bounded into the house through the dog door. I was on the sofa. She saw me and galloped the 10' space at break neck speed. I didn't have time to use my nonfunctioning arm to cover my incision. Or, even put a knee up to halt her charge. Both of her front paws landed full force on my incision site and implant. The instant pain was so great that I couldn't scream or yell. Mel grabbed her collar and pulled her off of me as tears coursed their way down my cheeks.

It was several minutes until I could draw a stable breath, or even attempt to speak. I really couldn't fault the dog. She's a happy puppy with all the exuberance of a puppy just in a huge, still growing body. I predict she'll be 75-80 lbs once fully grown.

So that proved to me that I wasn't as healed as I thought I was. I moved fairly gingerly for a few days. I wasn't able to pick the rabbit greens without taking frequent breaks. I really dislike setbacks. Then later in the week, I was going down the back ramp after a rain shower. Can you guess what happened? You got it. I slide to bottom. I actually made it 6" shy of the bottom before landing on one of the most padded parts of my body. The only bodily damage was a rather nasty scrape from hitting my functioning forearm against the hand rail on the way.

Kassity was in front of me on the deck. She excitedly hopped sideways, and back and forth. (Sort of like Scobby Doo), stopping now and then giving giving me a full face washing, started sideways hopping again. "Oh Momma Jo, that was funny! Do it again!"

I was trying to set my feet to rise, but Kassity was having none of that and kept knocking my feet out of position. When she came in for another full face washing, I grabbed around her neck. Her instinct was to pull back and try to twist free. The forward momentum was enough to help me stand. Where's a will; there's a way.

It was later that night, my spasticity overrode both my oral baclofen and the pump, in spasticity control and pain relief. I was awoken at 2 AM in pain again 7/10. How easily I forgot this used to be my still functioning daily pain level. I added back the decreased baclofen. I managed a couple more hours of sleep. My functioning arm was stiff, with angry red streaks in a field of purple and black. Oh yeah! That's gonna smart for a few days. I had only just gotten rid of all the bruises that the hospital had done with IV attempts (6) and blood draws. Geez, I can't catch a break. Er, um, poor word choice.

Of course, this happened over Memorial Day weekend. Nobody in neurotherapy was in. Now if I wanted to drive 2 hours to Emory's ER someone could called in. I didn't bother. If the pump was damaged, they'd just put me back on the baclofen four times a day until the Medtronics' tech could test it. I just circumnavigated all that stuff. Now it means 3 trips into Atlanta next week. I know without the orthopedist doctor saying, it will delay his surgery until my baclofen pump situation is straightened out.

Fun, Fun, Fun!

Nothing is impossible.

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 Turmoil~ The End for Right Now

This week came time to say goodbye again to my physical therapist. Sad, though she knows I'll be back.


I'd reached a point where PT was causing more pain than benefit with the returning of my spasticity and months to go, May, before another series of Botox injections. Yes, therapy does break the pattern of spastic muscles but the work outs were reaching the 8 out of 10 on the pain scale and lasting more than a day. Each therapy day I found myself having less and less progress because of it. The frustration was the real killer.

I had dropped the work on my foot and ankle for this very reason a couple of weeks ago. Between the Achilles tendon contracture and the spasticity we were only going through the motions, and not making a smidgen of progress.

Yes, I do know it takes time. I've said often enough here that time is money. I achieved a 30% increase in mobility of my shoulder and 80% regain in active motion of my elbow. I am now better in active range so that's a measurable progress. I absolutely despise having to pick and choose. But decisions have to be made towards optimal versus palliative alternatives within a given set of dollar choices. If I had my way I would stay in all therapies twice to three times a week until I recovered all I lost, but short of spending thousands of dollars out of pocket, that isn't an option.

I've talked about the contracture of my Achilles tendon, right? From what I've learned, it's fairly common with stroke survivors. It will take time to remedy. I'm using my therapy bucks wisely this year for optimal recovery. I'm in recovery for the long haul. There is no quick solution. I wish there was.

On a different note, I went shoe shopping the other day. I had no success. Where do y'all AFO wearers find shoes that fit??? I mean pulling the inside soles out of brand new shoes in the stores is sort of frowned upon. I was told one size higher and a wide width when purchasing shoes with my AFO. My orthodics maker said that Dr. Comfort makes shoes for AFOs, but the cost is like $175 for a pair of shoes! Then you are ordering via the internet so there's no guarantee once you get the shoes whether they'll fit or not. Now with the additional block on my AFO, it makes it doubly hard.

I must have tried on fifteen pairs of tennis shoes in the store! None of them were wide enough to allow for the width of the AFO. I could use some advice from someone who has walked in my shoes literally. My current pair was gotten while I was in the hospital by Hanger. I figured $129 worth of shoes wouldn't wear out so fast. In ten short months the instep sole has worn out to nonexistent in my left fully functioning foot. The soles are pulling loose and cracked. They pick up every piece of pine straw and Spanish moss it steps on. I've been to every shoe store in my town with no luck. HELP!