Sunday Stroke Survival: Time for a Change

I wanted to ask y'all some advice. I've been on a Zanaflex, Baclofen, Botox, and even valium regime since my stroke for high tone and spasticity. They have even recently upped the dose to 500CC of Botox with the extra 100CC going into my arm. Needless to say, I've spent a small fortune on this. But still, the spasticity level and pain it causes is increasing. All of this is beginning to feel like a losing battle and I hate it.

Before my spasticity progressed to moderate, and then to severe, I had voluntary movement of my elbow and two of my fingers. Now, even with all of this and weekly dry needling sessions, I can't  extend my elbow and have nothing voluntary in the fingers at all. My ankle no longer supports me without inverting. According to my OT and PT, I'm doing everything I should and can do. I've hit a major frustration point in this. I feel like I'm up against a brick wall and can no longer chip away at the mortar holding it together.

Is it time for a change???

What works for others with this condition? I understand this neuro-spasticity  is a mystery. My therapists and neurologists have talked at great lengths about the subject. I'm not taking just their words for it either. I've done quite a bit of research on the subject myself over the years. A lot of neuro deficits from my strokes, I can fight to recovery from. But this part I'm having trouble with. I'd call it quits and be okay with it if it wasn't for the pain that goes along with it.

I live and want to live life to the fullest, and I can't do it in pain. Having fibromyalgia just makes it worse. Pain, any pain, is amplified ten fold at a minimum. I've dealt with my condition for over a decade. I discount my pain levels mentally with meditation and stubbornness.I refuse to be held down and stop moving. This stubbornness isn't without its own set of problems. I do take everything slower on flare days, but I just don't lay in bed all day. I get up and do to the best of my ability in spite of the pain. In some respects I do not feel "lucky" that sensory nerves were not damaged by my strokes. I could honestly use some relief from all this hurting. But then, I also want to be a zombie taking this or that pain killer either. Aging hasn't helped. That in itself brings a whole host of other problems.

So I believe it's time for a change. After five years, there's got to be a better solution. I've been looking into baclofen pumps. Do any of my readers have one? I've got a few questions for you...
How long have you had it?
Are you satisfied with the results?
Would you do it again?
How weak does this IT unit make your functioning side?
How well does it work on your upper limb? Everything I've read said not very well. This is my main issue with it.

Having a pump is said to work better than the oral medication because it is delivered directly into the spine. This isn't a cheap option since the surgery alone is $30+K. The medicine to refill it has to be bought every 4 weeks (for a smaller unit) to up to every four months. It can cost up to $500 per refill. That's not my cost between Medicare and BC/BS. I expect to still pay out of pocket for some of it though.

I'm not a vain person so having the unit bulge my abdomen doesn't matter. If it works...then it's priceless. I'm not expecting miracles here. I'm desperate.The decision is still at least five months away for me. It will be my Christmas present to myself for a happier New Year if I decide to do it. I found a neurophysicist, at Shepherd Center, that performs this procedure 45 minutes from when I live, just north of Atlanta, so commuting will not be a problem for follow-up appointments and therapy. Like I said I've been researching it for a couple of years.

On the other hand, maybe just change up my drugs. But in everything I've read, I'm already on the most common ones. With my history of drug allergies, that's a scary proposition. But also given my history with general anesthesia and my heart stopping, that's even scarier. Mind you, I'm not a 'fraidy cat. I have some serious risks, but risk factors are weighed against the my decreasing quality of life.

As I've said before, I was well on my way to full recovery of my arm and leg before the spasticity set in so bad. The dry needling even with an electrical current running between the needles only gives me about 16 hours of relief from the pain and only 12 hours of relief from the muscle spasms (done weekly). That's with Botox 500CC 4 times a year), and 3 muscle relaxers, at almost maximum doses, that I take daily. I'm just tired of fighting this losing battle. If something doesn't work... fix it!

Nothing is impossible

Sunday Stroke Surivival ~Is Everybody on the Same Page?

Happy Easter, y'all! It's a beautiful Resurrection day full of hope and promise.

I got to thinking about while hopping from doctors and therapy...is everybody on the same page in your care plan? What happens in an emergency? Are they really prepared? Are they armed with the proper information?

For instance, I know mine are because I carry a printed sheet with me at all times for me and my husband. What's on this sheet, you may ask and I'll tell.

• Full legal name
• Date of birth
• List of medications
• List of allergies- drugs and others
• List of doctors, their specialty, with phone #s and addresses
• Current medical conditions
• Past medical conditions and surgeries
• Locations where copies of Durable Power of Attorney for Health Care, living wills, DNR are on file, and emergency contacts.If not carried. I had my husband sign two copies while being notarized.
• Shrink it down and laminate it if possible.

 I take these sheets with me to all my doctors and update as necessary. In  case of an emergency, the emergency team has access to information they might need to save your life. I wear an Medic-Alert necklace and had engraved on it, "check pocket for list."

I never keep it in a purse. It's always in my pocket and I'll tell you why. Think about a bad car accident scene. Everything is thrown all over the place. I want whoever needs this information to find it and save my life not search for my purse. If I end up in the water, it's laminated. No ink running everywhere making it unreadable.

When time is of the essence and minutes count in whether you live or die, this is very important. Even if it isn't a case of an emergency, everyone is on the same page including me. I even gave a copy of my info packet to my Podiatrist! He might never use it or need it, but if he does he'll have it.

A case in point. My mother had a routine visit to her family practice doctor. She went into respiratory arrest. Granted, he knew she had a DNR (do not resuscitate) order, but if he didn't have a copy or my father didn't, by law, he'd have to try and bring her back. No matter that she was eaten up with cancer. It covers his butt until the paperwork presented itself.

Another case in point. My husband cannot be injected with adrenaline without a heart team standing by. His cancer forms tumors throughout his body comprised of adrenal tissue. You give him adrenaline and it's like stomping your foot on the gas pedal of your car during rush hour. A very bad idea. His whole endocrine system goes into warp drive. Think of it as twenty-six adrenal glands instead of just one. Fun, huh? But this is important information the treating team needs to know.

Having worked as an RN/Paramedic in both ambulances and life flight helicopters, I can't tell you how many times I wished I had this information available. I still realize the importance after almost thirty years of not being in the field.

Another thing to think about and do. Arrange for copies of the above paperwork are kept on file in your charts or in the database at all your doctors' offices, EMS, and hospitals. Most will give you a card on where to locate the file with that information. You won't always be where you can get to these items in an emergency. Otherwise it wouldn't be an emergency, would it? Think about it as your emergency kit and don't leave home without it.

Remember, in an emergency or other times...

• You may not always be able to speak for yourself or your spouse.
• You may not remember and forget something vital
• If someone questioned your authority to speak on behalf of the patient.

A word or two about the last one. Since HIPAA came into effect, everyone questions everything. I ran into an issue with this while I was hospitalize after my stroke. I am my husband's DPOAHC (durable power of attorney for health care) and his general power of attorney.

There I was stuck seventy plus miles from home, and my husband needed a prescription for morphine. It does no good for my husband to call the doctor, he can't hear to answer questions by telephone. Our daughter tried talking to the nurse as me. I know illegal as all get out, but this was a desperation move. The nurse caught her and even though she understood the situation they had to hear the request from my husband or myself. She ended up putting him in the car, driving to the doctor's office with him, and getting the prescription. She then ran into the same situation at the pharmacy. Morphine is a controlled substance.

I just never thought about this situation before. I've since remedied this by placing all four of my daughters on a separate DPOAHC for both of us. Not to supersede mine but in case of emergency when I'm not available. Have you thought about if anything happened to you who would take over in your absence?

My #2 daughter held up her power of attorney and laughed a maniacal chuckle, "I can pull the plug now. You're in my hands!"

She's always the comedian and not that we would have expected anything less from her after such a serious conversation. She sent me this card afterwards to carry on the laughter. It's so true.

 But we do know she'll abide by our wishes also. All of them will. Your choice of whom you choose is important and not to be bestowed lightly. This is a decision of total trust. 

This blog has very little to do with stroke recovery, but is important. If you haven't thought about it, do. The clock is ticking. If you're all set, then hunky-dorry it's time for some fun! Party time. Let's do the Hockey Pokey. You put your right foot in...