What Happens Next?

I had done the five day ITB Pump trial.  I can say that the results were amazing! For a couple of days, I was able to feel how to walk “almost” normally again.

  • I “checked in” on Monday. After getting out of my street clothes and changing into the standard issue uber sexy hospital gown and settling into my room, the nurse took vitals and I set to wait for the doctors.  The doctors came in and gave me a rundown of what was going to happen the next five days (We were in constant phone contact prior to this day, so this was just a review).
  • The doctors then prepped my back for the insertion of the catheter which will infuse Baclofen directly to my spine. They start with  a super low dose. After the insertion, I am to lay flat on my back for 6-8 hours to allow the insertion site to heal. Otherwise, I run the risk of getting a spinal headache. Which according to  the doctors, is the worse headache one could ever experience. I was not even allowed to bend my legs. Apparently, I did not follow this direction to a T coz I got a headache that kicked my ass the next day. I wanted to do a test walk, so I lied and told the Dr. I was fine.
  • The first day at a low dose, I already felt a difference! My steps felt lighter and my foot was not curling in. The doctor and I walked a couple of times around the floor. My headache was getting worse, so we had to stop. And once again I had to lay completely flat on my back for a few hours.
  • Wednesday, the physical therapist came by to walk with me. We once again just walked around the floor. I asked if they had a treadmill, unfortunately they didn’t (i brought running clothes!!). I really wanted to try my new legs! She watched the video of me walking before the medicine was hooked up. It turned out that I was walking the wrong way. I was walking fast and steady, but I had adapted by walking while swinging my leg outwards to make big steps. I now have to relearn how to walk again.  I also walked around with Armando and Scotty, they even noticed the difference! Scotty said “You don’t walk like Frankenstein anymore!”
  • Thursday I was at full dose. My leg felt light, I didn’t feel any tone or spasticity, I wanted to run! Later that day, they started tapering down the medicine I was receiving. I had so many mixed feelings. I have many questions, I was anxious. I knew that when I wake up the next day the little bit of freedom that I had was going to be gone. My light legs will be gone.  I was sad.
  • Friday was check out day. The catheter was removed and I was placed on flat bed rest again for the rest of the day. The doctors came in and talked to me about the results of the trial. He was glad that I had thought to record myself walking as it served as a  good reference for the trial. We took a before and during video during the trial. Both the Doc and the PT  were very encouraged by the results, they think  I will get very good results from getting the implant. The decision is mine.
  • As I was flat on my back, I was apparently getting attacked by a Pokemon. My valiant husband rescued me!
    As I was flat on my back, I was apparently getting attacked by a Pokemon. My valiant husband rescued me!

The medicine is now completely off my system and I can definitely say that it made a big difference. I have talked it over with my family, I have thought about it the past few days. I am leaning towards getting the implant. Do I have HUGE expectations? You bet! I have some time to think about this, I have many questions. My family and I also have our reservations because as with any surgery there are risk. But seeing the difference, how could I even have a second thought?

 

Trials and Expectations

On Monday July 11th 2016, I will be checking in at Kaiser Redwood City for 5 days.  This time, I am going in on own volition.  I was reading up on post stroke treatments and there are many out there. Many of these options were not brought up by my doctors.  In my research,  I learned about the Intrathecal Baclofen Pump or ITB pump. Baclofen is a medication that I take that helps relieve the spasticity and tone that was the result of the stroke. In simple terms, spasticity is why my hands stay clenched or why my knee does not bend when I walk. I’ll get into detail about tone and spasticity on another post.

I have worked hard at getting to walk again, I can even try do a quick jog. But when I do, my left leg feels like it is wrapped in a cement block. By getting the pump, I hope that the tone on my leg would ease up enough so I could run again.  I won’t be in constant fear of falling on my face again,   and I wont be causing damage to my other joints.

This 5 day stay will be to determine if the pump is suitable for me.  The trial period involves the insertion of a catheter through my spine where the medicine will be delivered. During the hospital stay, they will determine if the medication is a good fit for me.  They will also determine the right amount of medicine that I will need. I am to get physical therapy twice a day to get an objective view of my progress or lack of. After the trial, if the medication is effective, I can decide if I will go ahead with the implant surgery.

I maybe putting too much hope into this trial. I am expecting that this trial will show that I will be able to run again. That my leg will function as it should again. That it will stop the painful spasms that wake me up in the middle of the night as if someone is tightening a vice grip on my thighs. I have very high hopes. After the trial period, I will have a few months to decide if I would want the surgically implanted in my abdomen with a thin catheter attached to my spine delivering medication.

The doctor has informed me that this method had worked very well for people with such high spasticity that they are not able to get up from their wheelchairs. In my mind, this sounded like this “if it helps people who cannot walk get up and walk again, then imagine what it can do for me!”. The doctor quickly burst that bubble by saying “you might not notice much difference in you” BUZZKILL!!!!

I am scared, I have high expectations, I am hopeful. If there is a chance that this will work, this trial is where I get to find out.

Please send out some positive vibes for me! Stay tuned!

 

Driving Miss Crazy

There are many things that this stroke has taken away from me. My patience ranks in the top 10. One of the things that I miss the most is driving. We always tend to take for granted things we do on a regular basis until we cannot do it anymore. In the rehab hospital, in the thick of the post stroke fog, I was told that my license has been suspended (DMV law). It didn’t really hit me at that time. I made a joke about it: “I’m in rehab, on a bunch of drugs and  I got my license suspended, I guess Lindsay Lohan and I now have something in common!”

After my discharge, the reality of losing my license finally dawned on me. I had numerous appointments, places to go etc. etc.  I had to depend on Armando for rides.I feel terrible because I could not even drive the boys to school. I cannot even go the salon whenever I need to get a pedicure or to get my eyebrows done. I cannot go the gym or anywhere without adult supervision. It’s been a year and 8 months since I’d last driven a car. The loss of independence is frustrating. I have been lucky that Armando now works from home and is able to drive me around. But he is not always available. I have really good friends who have given me rides to appointments, shopping and of courses races. My oldest son has since gotten his driver’s license, but he has a job with odd hours. It’s summer time and in the past years, I as I have the same time off as the boys, I would gather them up, pack some sandwiches and go to Monterey or Santa Cruz. Or to San Francisco  to watch our Giants or to just walk around and hang out.  Not being able to do those things anymore breaks my heart. Our car time is our talk time. I learn so much about my boys during those drives.

To get my license back, I would need to get my doctor’s clearance and take a permit test (yikes!) and a behind the wheel test (double yikes)!! But before I even get to that, I have to get clearance from my doctor. She then completes a 5 page document for the DMV.As part of my evaluation, I went to see an occupational therapist. I had to see a new person, since my regular therapist was not available. The OT saw me for 45 minutes, determined I still have minimal use of my left arm and coz of that, I would need a special steering wheel handle a.k.a a suicide knob (ikr?), I have some peripheral vision issues which means I need a special type of rearview mirror. One that extends the entire length of the windshield.  She also gave me a short cognitive test. After 45 minutes, she determined me fit to drive.

Now, you might be asking why I have not rushed over to the DMV to get a new drivers license. Frankly, I am scared. I worry that I still have problems with reaction time, my vision changes from day to day, hour to hour. My attention span is short and finicky. having been a passenger for the past two years, I have garnered a different perspective on other drivers. Drivers are very distracted, angry and in a hurry. The roads are congested and people are frustrated. As sad as it is to admit, I do not feel ready to drive. I feel that I would be putting my family and others at risk if I am out there driving. Maybe I am overly cautious, but I’d rather be safe than sorry.

For now, I will be patient. I throw myself to the mercy of my friends and family hoping that they will continue to have the patience to have me as a passenger. I am willing to learn how to use public transportation, but my family thinks I still need adult supervision at all times.

Much love,

Momma Berna

 

The Faces of Stroke

When you hear about a person whose had a stroke what is the picture that comes to you?

Many times when someone asks me about my stroke, I get these reactions: “You are too young to have had stroke!” or “you look good for someone whose had a stroke.”

If you had asked me a couple of  years ago what I think a stroke “victim” would look like, I would have said “old, wheelchair bound and frail.”

I had never pictured myself a stroke survivor. Other than high blood pressure, which I thought I had under control, I did not think I was at risk for a stroke. I lived a healthy, active life.  I am learning now that stroke does not discriminate.

These are the faces of stroke: Men and women of all ages, from all walks of life. All of them fighting, surviving, thriving.  

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I would like to thank the men and women who shared their pictures so I can hopefully change public perception about stroke survivors.

 

 

And I Get Up Again

Previously on MommaBerna: I had talked about my first (and thank goodness my only one so far.) fall. This was how it happened.  In this installment, I’ll talk about my emergency room experience.  The drive to the E.R was a tad dramatic. I guess the adrenalin from my fall was wearing off.  I took a quick look at the visor mirror and what I saw was my bloodied, swollen mug.  This was when I emotionally fell apart. My poor husband, driving in an already panicked state, now also had to calm me down. IMG_8603

I was crying “oh dear God, I am already crippled and now I am going to be ugly too!” And the tears were falling freely and loudly. I knew I was going to get stitches, I am going to get a huge ugly car. We get to the E.R. and of course, there was a long line of people waiting just to register.  I was called in, given an initial assessment and was sent to get a CT scan (I am pretty sure that after all these CT scans and MRIs I will either be a superhero or I’ll glow in the dark).  I must’ve hit my head when I fell and Armando told them that at intake.  I suppose as someone whose had a stroke, they are more vigilant about checking for internal brain damage. The doctor took one look at my cut, and determined I would need stitches. The room I was given was tiny, imagine Harry Potter under the staircase cupboard room tiny.

So….for my fall I get not one! not two! but four shots of numbing stuff injected to my face! Why don’t they have numbing stuff to numb the face for the numbing needle? I had to get my wound washed out, so i had my face on a bed pan which Armando found hilarious! I was tended to by a sweet, gentle and kind Physician’s Assistant. She had me calm and settled. Her fingers were so light that I hardly felt the stitches going into my face.

The bedpan was on the wrong end of the bed!
The bedpan was on the wrong end of the bed!

I want to say that I jumped right back into the exercise wagon after the fall but honestly, I was scared. I did not want to fall and get hurt worse than I did.  It took me a couple of days to get back to the gym. The gym employees had a great time joking about how I look like a tough guy walking around with my shiner.

I suspect this won’t be the last fall. I am more cautious now, and I really haven’t walked much since then, I have however discovered the joys and safety of water walking and Aqua Zumba.

 

Much Love,

Momma Berna

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Runner, Runner

Misunderstandings are the heart of many sitcoms. Anyone remember Three’s Company? Yeah it’s funny until it happens to you. Then you just have to laugh about it.  The first  night  in rehab, I had to use the bathroom and a  nurse came in to help me. As she helped me get out of bed, an alarm went off. Two nurses rushed in the room and asked if everything was alright. My thinking was still really fuzzy then so all the hassle just went over my head. The next day, as I was wheeled into the physical therapy room, one of the therapists was unbuckling me from the wheelchair. He made a comment on how I was double belted.

“what did you do?” he asked. I did not know what he was talking about. That evening,  I asked the doctor why my bed was alarmed. It had gone off a couple of times during the day.  I was curious. She told me that I have to stop trying to get up and get off the bed on my own. She threatened to place a safety enclosure over my bed to keep me in.  At this time, I still could not move the left side of my body.

This was the 'cage ' that was going to be placed over my bed if I tried to run away.
This was the ‘cage ‘ that was going to be placed over my bed if I tried to run away.

I could hardly feel my leg where did she think I was going to go? The next day, the pt once again said something while buckling me to the wheelchair. He also said that there is an alarm on my wheelchair. I wanted an answer. I needed to know the reason behind the tight security?

The answer made me laugh and to be honest a little proud of myself.  Someone the hospital had made a note on my chart that I  was a “runner“. The staff at rehab took that to mean that I have been trying to escape! I was flattered that someone would think I am capable of running away! I was also confused, where did they think I was going to go?

It took a couple of days before the staff lifted my security order. They had to wait for a team meeting, the doctors and therapists had to make a decision to ease my restrictions. It took two more days before I was given my “freedom”.

 

This is the Story….(how my life changed got turned upside down)

I once had a blog where I intended to talk about running, races, and training for runs and races. Life got busy and the blog fell by the wayside. Then life threw my family and I for a loop.

It was Tuesday, October 28, 2014. Game 6 of the Giants vs. Royals World Series. I had been asleep all day, having had a shot of morphine at the emergency room the night before. I had the worse headache of my life Monday night, I was screaming in pain so my husband, Armando drove me to the emergency room. They did not determine anything to be wrong, do they gave me a dose of morphine (perhaps to shut me up as I was screaming!!!) and sent me home. The next day, I called in sick for work and slept. When I woke up at around 4:00 P.M. feeling guilty because I had slept all day, I went downstairs with faint ache still lingering in my head which I attributed to the meds wearing off, I made dinner.

I guess this time, my tutu did not bring me any luck at all.

After dinner, wearing my orange tutu I cheered my Giants on. A win would cinch another World Series title.   My headache was getting progressively worse, it did not help that the Royals tied the series. I remember everything being hazy that night. I went upstairs to get ready for bed my head pounding now, I was also very nauseous. I said goodnight and I love you to Scotty, he asked me too lay down next to him for a bit. He looked very sad when I told him I can’t I just wanted to lie down because my head was really hurting. I threw up in the bathroom and staggered out. Vincent kept asking me what was wrong, I was telling him I my head was hurting really bad, he kept saying “I can’t understand what you’re saying”. I don’t how Vincent knew, but he said “I think you’re having a stroke”. He called 911.  I tried opening my eyes and saw paramedics, I kept hearing “stroke”. My recall of that night is definitely vague. I thought I was saying I have to say bye to Scotty, but when I asked my family about that they told me I never said it. This was the beginning of what would be the longest race I will ever tackle.  Please join me on this adventure.  I would love and appreciate your support.