curled toes failure again

 Even wearing the toe crest in walking around Paris didn't help. The third and forth toes came into a lot of pain at the end of the day. I moved the toe crest to the forth toe and that seemed to help a bit more. But I should be able to go to that database of publicly available rehab protocols and CURE my curled toes.

Failure at clipping

 In preparation for my Paris trip I wanted to add a compass to my daily carry bag. Since the clip was directly attached to the bag I couldn't bite the compass ring to get it in position to clip. One handed pulling on the barrel clip left the fingers obscuring the small opening and had no fingers left to get the ring inside the small opening. With much swearing I succeeded.

 

 

Drying the underside of the good arm

 Another failure point of my doctor.  I have to rub it against another towel hanging in the bathroom.

Spasticity of the left leg

 From the picture taken at the end of a pedicure you can see that the left foot drastically juts outward due to spasticity. Even when walking this leftward tilt occurs so walking is screwed up. Any physical therapist in the world should have EXACT STROKE PROTOCOLS that cure that. 

 

Yawning

 Yawning is a moderate problem. 

1. Sitting in my chair working on my laptop it causes the left arm to rise almost to my chest, threatening to dump the laptop onto the floor. I have to immediately grab the left arm with my right hand and very forecefully push it down. 

2. Driving a car I can't control it with my right hand so it wanders all over getting into trouble.
   

I've seen nothing anywhere on how to prevent this from happening.

Driving

 Drove to St. Paul, Minnesota and back. One session I managed to get my left arm to hang out the open window for 40 minutes before having to pull it in. I have zero ability to use my left arm muscles to get the arm either on the window edge or back from it.  The second time I tried it I had to pull in in after only 5 minutes, the muscles were screaming so loudly.   Don't know the difference in setup. 

 I now have to pad my left knee with excess clothing because it abducts outward and painfully presses into the door.

I guess I should be doing these, which I should have received from my therapists:

10 Hip Abduction Exercises | At Home Abductor Workout

Hand sailing car window failure

 Now that it is getting warm out it's time to hang the left affected arm out the car window. The muscles in the upper arm and shoulder scream at me because of the spasticity not allowing any relaxation. Since I have zero ability to lift my arm or get my wrist and fingers straight I can't do this at all. But I'm working on the extra sensation which is why doing this while raining is great. The raindrops feel like needles.

Driving to Florida and back

 Left Dec. 20 with a friend and her niece's dog. Took 21 hours to get there. Stayed at an Airbnb on Ana Maria island til Dec. 30. Walked the beach every day. 

This was the beach view from our balcony on Christmas day, a type of white.

 Then went to a friend in Zephyerhills,FL. In Florida, in Pasco county I was trying to get Sherry's mother set up, at 2 and 3 pm they would open registration online for the next day 2 and 3pm shots. Only once was I able to actually get the register button active at the appointed hour, clicked on it and brought up the next page which said vaccinations were full, try again. The next day they shut off registration because they ran out of vaccine. They don't take phone calls to get registered so all those elderly that don't have a youngster doing the legwork are screwed.

Not quite warm enough to do our daily 5pm wine or sake rituals outside. 

Drive home was alone, Jan. 9; 9:30 am start, arrived 6:30am. 21 hours later, last hour was hard, had 7 of these Starbuck doubleshot espressos, the eighth got lost in the back seat. Dammed hard finding hard rock on radio in the middle of the night, mainly religious or country. My neck got quite sore 20 hours in. When I got home my left knee was hurting a lot, probably from lack of lubrication via walking during the drive. A friends DMSO application helped the next day.

Toe crest failure

I've been wearing one for years to somewhat help my curled toes. I know of no guideline or protocol on when it should be used and its efficacy.  The strap goes on my third toe. It mostly covers the second and third toes. This was never a problem until my Banos, Ecuador trip. One day we walked across a muddy trail on a 50 degree slope to get to the La Virgen statue. Then down 654 steps to get back to town. The downhill part caused the problem. The fourth toe had almost no ridge under it from the toe crest. That meant that as I was going down the top of that toenail was being pressed into the shoe. Luckily it didn't cause the nail bed to loosen and have the toenail fall off. Probably because before every trip I take I now get a pedicure. As a result of losing my left big toenail hiking around Barcelona once.

The statue, “La Virgen” honors the Holy Mother of the holy water and was built in 1987 by Father Acosta

What it looks like today

The muddy trail on the way to La Virgen, quite a slope

Failures at entering the driver side car door

An ADL I still fail at. Every therapist in the world should have protocols to correct every single failure. Not compensation, recovery back to your previous state of ability. There was a car in the therapy department but testing was only done on the passenger side. COMPLETE FUCKING FAILURE TO EVEN THINK THAT SURVIVORS COULD POSSIBLY DRIVE AGAIN!

1. Step into car with right leg.

1. Put left hand fingers into door handle slot. Failure due to spasticity. Fingers will not straighten unless the right hand does that. Will not stay straight. 

1. Swing down and put butt into car seat.

1. Hand should stay in door handle as the butt gets into the seat. Failure. Fingers immediately clench into fist and pull from the slot. Failure as arm does not extend as butt gets into seat. Due to spasticity from pectoralis major and latissimus dorsi.

1. Arm is now hanging against the door sill. Compensation is required, using my right hand to pull the left arm inside the car onto my lap.

1. Car door is still open. Compensation is required to reach across my body with my right arm/hand and pull the door shut.

Every single one of these failure points should have an EXACT PROTOCOL to correct it. This problem has been known since cars were invented. And still ABSOLUTELY NOTHING has been done to correct it. Well over a hundred years of failure and no one in stroke ever mentions any of these little problems needing fixing. Don't you know that stroke is treatable from a meme on World Stroke Day a few years ago? And since there are NO problems in stroke to solve we can fire all those stroke researchers and use that money to hire PAs for 10 million yearly stroke survivors. No more stroke problems. I just defined the problem away.  

Failure at hand resting on leg

When I drive one of the positions I try to do is rest my open palm on my left leg.

Multiple failure points:

1. Bicep spasticity puls arm off of leg.

1. 4 finger spasticity requires all my strength in my good hand to straighten. Dangerous while driving.

1. Thumb spasticity is not possible to control at the same time as straightening the fingers.

1. Wrist spasticity curls the wrist off the leg almost immediately.

In summer this sometimes works.

I expect that every stroke doctor and therapist in the world should have a protocol, not a guideline, to correct these problems. There are hundreds of thousands of stroke survivors every year needing these solutions and I bet your doctor has not done ONE DAMN THING to address any of those problems.  I don't care how hard it is to solve, at least try something.

Drivers side car door closing

My hospital had a car in the therapy department so we could practice getting in and out of the passenger side, never the drivers side. So the dumbing down of stroke goals is completely ingrained in therapy departments. There should be an ADL for everything to do with a car, opening the car hood with only one usable hand, using turn signals, adjusting the radio and heating controls.  There are many failure points in car door closing.

1. Fingers do not extend due to spasticity to fit into the door handle slot.

2. Arm does not hang down straight due to spasticity.

3. Both of these means there is a failure to even get to the starting position of door closing.

4. The step of the right leg into the car requires the left arm to swing out from next to the body, spasticity means that failure occurs at this point also.

5. As your butt cheek hits the seat the door should be starting to close, your left leg needs to quickly get pulled inside as the gap narrows. Failure again as the left leg no longer moves quickly enough.

All in all a failure from start to finish. I expect for the millions of survivors wanting to drive again after stroke there should be stroke protocols that address each failure point. 

Compensation is not good enough, we need to demand recovery. For me that would be stopping my spasticity. Everything else I can take care of by myself.

Changing headlights

A headlight burned out on my car. The idea was to have some friends help change it when I was with the group going to Spain next year last weekend. Forgot about it until I was driving to Chicago again. Just changed it in the parking ramp this morning. Luckily it was just a twist and pull, so I didn't need to hold my smart phone flashlight to see what I was doing. The hardest part was lifting the hood up and getting the brace in place. Ended up using my head to push it up far enough to lock the strut in place. Low beam burned out, high beams are never used, they would require a usable left hand or incredible skill reaching over the steering wheel with the right hand. But if we still had dimmer switches on the floor I would have enough control with the left foot to do that.

Car rentals

Since I am on the road again I get to rent cars each week. Usually small ones like the Fiesta, Rio, Accent, Elantra, Sonic, Focus.

I am good enough now to reach over the steering wheel to put on the turn signals. The worst rental was the mid-size pickup Nissan Frontier. Couldn't tell where the front of the truck was and didn't have a backup camera. I have tall legs and could barely get my butt on the seat to slide in.

Pedicures for stroke rehab

I'm now doing this every other month, it is way too hard to do my toenails one-handed. Your doctor should have this as a stroke protocol immediately in the hospital.  That would follow recommendations written about by Margaret Yekutiel in the book, Sensory Re-Education of the Hand After Stroke in 2001.  If that had been done for me I probably would have had toe recovery much sooner than 3 years.  But don't worry, your doctor will do nothing about establishing a sensation and motor recovery stroke protocol, probably because s/he has never read that book or any stroke research.  You are fucking screwed if you have a stroke.

Arm rehab possibilities while driving

You can't let any time go to waste. None of these have any clinical studies to back them up. Don't do them.

1. Drive with the left hand at the 1 o'clock position. This only works on straight or slightly curving roads. I can only do it for 15-20 minutes before spasticity tires it out. I then use my right arm to hold the left hand in position at 1 o'clock.

2.  Roll the window down and lift the left arm on the sill so the lower arm will hang out the window. This provides massive amounts of necessary stimulation. Even better when it rains and it feels like needles entering your skin.

3. Hang the arm down between the seat and the door. This requires using the right am to push the left arm into place. Spasticity rears its ugly head and unless I wedge it properly it will crawl back up into my lap.  Trying to stop my spasticity with this therapy.

4.  Put left elbow on arm rest, hand at 7 o'clock position. This is to quiet the spasticity that tries to pull the elbow to my body and get some grasping with my fingers.

5.  Put my left hand between my legs, left thumb on seat but under right leg, fingers trying to dangle below. This causes staining on my car seat.

There is never enough driving time to get these all accomplished. Number 2, 3 and 4 require doing this while stopped.I really do expect my therapists to know how many repetitions and time is needed to recover these functions.

At least now while doing #1 and on cruise control I can drink coffee using a straw or change CDs.

Driving challenges

Tonight I drove 1 hour 6 minutes to Grand Rapids, MI to see the Banff Mountain Film Festival. Great films. Drove on the interstate on cruise control at 71mph with the left arm at the 12:30 position. It is there because that position straightens out the arm a little more and is easier to conteract the tendency to drift left. For the first time drove that way back at night also. I'm not sure how many hours of driving I will need to do to feel completely confident about those abilities. The fingers are not yet gripping the wheel and I still have to lift the left arm with the right and uncurl the fingers to get it positioned. But at least I can now do this while the car is moving.  Our therapists should know the answers to these simple questions. I'm sure driving is requested by almost all survivors so there should be protocols about how to recover driving abilities.

Pedicure again

Just got a pedicure to try to forestall the problem I had last year on vacation where I lost the left big toenail due to massive amounts of walking on the cruise, not tight enough shoes. Leaving Thursday for 8 days in Paris, 7 days driving the French country side. Much wine will be consumed.

Health goes downhill when older adults stop driving

My doctor told me nothing about when or how I could get back to driving. Didn't even tell me anything about whether he had to report my driver license to the state as a result of my stroke. He was completely worthless. 2 years later I went on my own to another facility that had driver training,  The problem with that is that you get no practice time, you show up and are put in a car with a spinner knob and are expected to immediately function perfectly.

Is your doctor letting your health slide downhill because s/he has no stroke protocol on how to get back to driving?

Health goes downhill when older adults stop driving

Study shows seniors experience double the risk of depressive symptoms, along with declines in cognition and physical functioning.
Researchers at Columbia University’s Mailman School of Public Health examined the health and well–being of older adults after they stopped driving and found that their health worsened in a variety of ways. In particular, driving cessation nearly doubled the risk of depressive symptoms, while also contributing to diminished cognitive abilities and physical functioning. Findings are published online in the Journal of the American Geriatrics Society. “For many older adults, driving is more than a privilege; it is instrumental to their daily living and is a strong indicator of self–control, personal freedom, and independence,” said Guohua Li, MD, DrPH, Mailman School professor of Epidemiology, the founding director of the Center for Injury Epidemiology and Prevention at Columbia, and senior author. “Unfortunately, it is almost inevitable to face the decision to stop driving during the process of aging as cognitive and physical functions continue to decline.”

Driving with the affected left arm

Don't assume you can do this if I can. Two years ago I tried this, getting the left hand on the steering wheel at the 11 o'clock position. But failed because my bicep spasticity was stronger than my finger spasticity for grasping. I have to do this in town on stretches of straight road because I have to uncurl my fingers to get them on the wheel. The freeway doesn't work because accelerating down the on ramp at the same time as trying to get the fingers on the wheel doesn't work. My right arm is always available to immediately knock my left arm off the wheel if necessary. This does require the crossover turn signal extender since I never would be able to reach around my left arm to get at the regular turn signal. There is no ability to look over my left shoulder into my blind spot for cars, I'm limited to constantly checking mirrors.  I'm back to 100+% attention to driving again, same as when I started driving.  The tiny corrections needed to keep the car in the lane are great for maybe finally getting some use out of my arm and hand.  I can see in the distant future the ability to drink coffee, change CDs, radio stations and look at passengers when talking to them.