Sunday Stroke Survival: 2020 Wrap Up and What's to Come

Oops I missed posting last week.

I hope everyone had a good Christmas holiday.  It's that time of year again for reviewing the past year and figuring out what's the plan for 2021.

In 2020 review...

I finished my cancer treatments with a clean bill of health!!!

Last year really flew by with only a couple events of any real, personal interesting points.  I got infected by COVID-19 way back in February and I didn't realize it until much later. The end of January, Mel got sick with a fairly high fever, horrendous cough, and moderate difficulty breathing. With no medical insurance, she fought me on going to the hospital, but I finally (after 3 days) won the argument. The doctor at first, thought it might  the flu, but ruled it out fairly quickly. They wanted to admit her, but she refused. They didn't know what her problem medically was. I brought her home and treated her the best I could homeopathically with herbs and immuno-boosters I grow here. I warned her that if her fever went above 103°F and if she did not respond to me she was going right back to the hospital. It didn't happen. Eventually, her fever broke and she got better except for a cough and loss of stamina which lasted for months.  As an after effect she now becomes short of breath and has a heart condition.

The first part of February, it was my turn. Even though I'd wash my hands and wore a mas while treating her, I got sick though not as bad. I felt like I was going to cough up pieces of lung tissue at any moment (I didn't), had a medium grade fever (100°- 101°), and was shorter of breathe. It lasted about two weeks. I had lost my sense of taste and smell  (I still moderately suffer with this). I did touch bases with my PCP, but didn't go in. His instructions were the standard- control the fever, push fluids, and rest. If it got any worse to go to the ER. So that's what I did. 

We didn't hear about COVID until March with the rest of the country. We figured that's what we had been fighting. An antibody test shoes I had it. We were luckier than others with this virus. It was no worse than a very bad cold or brush with the flu.

I had a T-car procedure done on my left cardioid artery. Uneventful, but now have to do the right one done Jan 5th 2021.

I started Botox again for my post stroke(s) spasticity. With Emory in and out of locked down mode for nonessential surgeries, it was looking like summer of 2021  before I could have another baclofen pump implanted. So far, my body's response to doing Botox again has been good.

After the first series of 400 units, I was almost able to straighten my arm to full extension and raise it above my head. Which is way better than the 6" I'm able to move it without the injections. I could shave my underarm with ease!  The gain gradually reduced over time and by Thanksgiving the pain of my entrapped shoulder and bicep returned but I was scheduled for more Botox the first week in December. So it was manageable and short lived. I'm in physical therapy again.

I got another AFO and new shoes. The AFO still needs work. I've formed new pressure sores above my ankle and at the first metatarsal (at the base of my big toe). Oi Vey! So far though, no reoccurrence of the pressure sore in the spot that has plagued me for eight years. I guess I should count my blessings. This is the first time my shoes didn't need alterations of build ups and rockers added.

That's been my year besides falls. When I entered PT again they estimated my falls by how many I had in the past couple weeks... 48 falls a year! That sounds like a lot, but thinking back, it's a little on the high side. I remember about 30... not counting falls that I averted by catching myself before I actually hit the floor or ground. Is that a lot? It seems fairly standard to me after back surgeries and strokes in the odd 30 years or so.

What's coming up on 2021...

• The right sided T-Car procedure of my carotid artery is slated on the 5th of January.
• We've got our new garden area ready for seed potatoes in February. The 5th tier of the garden is almost completely revamped for vegetables. The seeds have been ordered. So we should get a good harvest.
• We staked out where our tiny houses will be built and leveled it. We've set the foundation piers. Now we've just got to save for the rest of the lumber before building can commence.
• My 9-month post cancer ultrasound (the week before Christmas) of my thyroid area showed another mass. Just when everyone thought it was gone, surprise! So everything else is up in the air again! But for now, I'm still alive and fighting. So much for a normal year. Sigh!

Nothing is impossible.

Neurosurgeon Update

At long last,  I had my consult with the functional neurosurgeon. I've only been trying to get in to see him for 8 months! If you remember I had to go through Emory's Stroke team first.

I spoke at length to his assistant. He in turn spoke to Dr Boulis before he came in to see me. Dr Boulis and I reached common ground very quickly. I could see the gears turning in his mind for the best possible outcome. His assistant had already performed the spasticity assessment and preliminary exam. To nobody's surprise, I was ranked severe. I've been this way for months. I'm now 10 months since my last Botox injections.

I simply said, "I'm broke. Fix me." In my mind, I was doing my Austin Powers imitation. "I want it all. Yeah, Baby!" I wasn't afraid of the pain of recovering from surgery, nor hard work entailed to get what I wanted. I never have been.

He nodded his head and asked me which was more important pain relief or recovery. I answered back
with both. The only way to fight spasticity is to strengthen the weak muscles and I wanted a fighting chance. He said he was impressed by this answer. It proved to him that I had given this a lot of thought. I explained to him that I'd read almost every report on spasticity in the past three years including some of his. I even mentioned his TEDMED talk in Washington, DC. It was about the battle that goes on between the neurosurgeon, the patient, biotech, and the FDA. Pretty interesting stuff, but I digress.

The thing about the rhizotomy is the prolonged recovery time, at least a year between the surgery and  reteaching the body. So if he did a dorsal rhizotomy to my lumbar spine, it would be a year or two before he could do the cervical/thoracic one and vice versa. Especially since I'd already spent six years in this fight. I had confessed to him that I was tiring of the fight for recovery post stroke. I'm still in physical therapy and looking for answers after six years post stroke, for God's sake!

He first did the "do no harm" speech and explained he didn't want to make it worse. I lifted my affected arm the 4" away from my body for emphasis. That's how much voluntary movement I have in my affected arm with the spasticity. "Worse than this?"

He had to admit that it couldn't get much worse. That left the leg. While I've lost the ability to dorsey flex and evert my foot at will because of the spasticity, it still keeps me ambulatory. Sure, I'll stumble over invisible lint, or fall, but I'm still moving under my own power. The new new AFO is correcting my odd gait issues. I again imagine I'm seeing the gears move in his brain and the light bulb goes off. A Baclofen pump for the lower limb would work better than the oral medicine. Both surgeries could be completed within a year.

Then I dropped the bombshell. First one, and then the other. I told him about my aneurysms and about how my heart reacts to anesthesia. I half expected him to run out of the room screaming, but he didn't. Now, it was my turn to be impressed. No sense in doing the rhizotomy before the aneurysm is fixed. If it blew, I'd be dead. That would have to wait until after cardiology gave the all clear for me to be off my blood thinner for three weeks. But the Baclofen pump trial could be done to see if it works on my ankle and foot spasticity. I would only have to be off my blood thinner for a week prior to that surgery. I would also have to be cleared by the Emory heart team prior to the rhizotomy. It's just Emory covering their butts, but I understand it. They don't know my cardiologist or my vascular surgeon.

Tomorrow, I'm calling my cardiologist first thing. It's time to get this ball rolling. My hope is renewed and very much alive after this appointment. At the very least, it's a positive action plan.

Nothing is impossible.

Sunday Stroke Survival: Gearing Up for 2017

Happy New Year! Can you believe we've made it to 2017 already? I can't. It seems like yesterday everything went boom. I was minding my own business and BOOM I had a stroke. BOOM AGAIN, I had another one. THEN a gigantic BOOM, I lost my beloved and moved. I honestly didn't think I'd live this long, but I have.

Just after Christmas, I make plans for the coming year. This year is no different. While most of the plans involve the new homestead, I have made some personal goals too. I don't call them resolutions, because nobody ever keeps their New Year's resolution, do they? But I set up goals I plan to meet during the year.

Goal #1- Keep making strides towards recovery of my arm and leg. Notice I don't say I will recover my arm and leg, but make strides towards that goal. If it happens, I'll be content and I won't discount it. The recovery of my arm has met with huge set backs over the last few years. First was a torn AC ligament in my shoulder. Second, when there was light at the end of the tunnel, was the torn rotator cuff. Complicating but issues is/was the spasticity. My leg responds well to the Botox and dry needling. I'll continue working on strengthening the weak muscles involving the inversion problem in my ankle, calf, and foot. I am still expecting a full recovery though.

Goal #2- Continue to lose weight for the ultimate goal of 120 lbs. It's more in line for my small five-foot frame. Not that I'm seriously dieting or anything. I'm just more active here. I lived a sedentary/more confining life watching my husband die. To date, I've lost 42 lbs so since Spring 2016. I'm more than halfway to my goal weight. I figure it will take another year or so of replacing fat with muscle again.

Goal #3- To get active with the local stroke survivor support group. I've been meaning to get to this since my move to northeast Georgia, but all the ins and outs of getting this new homestead going has kept me far too busy. That's not to say 2017 will be less busy here, but it will be more manageable although growing. They only meet every two months.

That's it. Nothing Earth shattering. Just keeping on, keeping on. I'm keeping my goals realistic and doable. I'm at an age that keeping goals doable is important. Being a stroke survivor, makes this paramount. We've had enough hard knocks to last us a lifetime. I guess God is succeeding in making me more patient. It's only taken almost five years to get to this point. LOL

So what are your doable goals for 2017?

Nothing is impossible.