July 2016 * Survived to Thrive by Momma Berna

Stalled but not Defeated

” But man is not made for defeat. A man can be destroyed, but not defeated” – Ernest Hemingway

The word “plateau” is one that brings fear to athletes. By definition PLATEAU is to reach a state of little or no change after a time of activity or progress. But for athletes, to reach a plateau in their training means they now have the challenge of having to change up their training. For runners it might be adding hill repeats, adding fartleks to their routine or simply cross training. This are what athletes do when faced with a lack of progress. They do not see the lack of progress as a time to quit, instead it is an opportunity to establish a new routine so they can better themselves.
Apparently for some doctors, physical therapist and of course insurance companies a plateau is the time to just quit. To give up and lose hope. When i left the rehab facility, the neurologist and the psychologist both told us that I have six moths to regain what I have to regain. After the six month mark, I am just to accept whatever progress (or lack of) I have and learn to live with it. I have to admit, hearing that was scary and painful. I was not going to accept that I will be in a wheelchair forever. I was so afraid to hit the 6 month mark, that I worked hard to start walking again.

I had made a lot of progress during the first six moths,but I knew I had a long way to go. I kept working on getting myself better. There would be moments when i felt stuck. I went to my Neurologist with questions. I would ask her for ways to improve, for ways to retrain my brain.

Her response every time would be “You have plateaued. There is not much you can do.” What I heard was “The insurance company have determined that you are on your own. Good luck” What I did was researched, asked questions and worked harder. I found out about Botox, acupuncture,E-stim all of which helped. But the work is still up to me. There has been many bumps along the road. I get frustrated, I hurt emotionally and physically. But I keep going. As much I would like for there to have a “miracle” cure, I know there isn’t one. There are research currently being done on how to rewire the brain, but for now I only have hard work to count on. It has crossed my mind to participate in different trials and I probably will if I find one that I would feel most comfortable with.

If given the opportunity, would you participate in an experimental treatment?

I will keep asking my doctors questions, I will keep working hard. I have proven doctors wrong in the past and I plan on doing more of that in the future.

Much Love,

Momma Berna

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!

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