October 25, 2014

Being Undressed Like a Baby

Recently I snapped at a dear friend who has been very good to me.  When she saw me preparing to retie a shoelace she offered to help.  When I said I could do it she persisted in offering to help. 
I react negatively when someone offers to help with shoe tying because every physician I have seen since my stroke 11 years ago reaches down to untie my shoelace during a physical exam.  They do this quickly without giving any advance warning because they know it was not appropriate for a male doctor to undress a female patient.  This is humiliating.  I do not know how old I was when I decided my clothing is a part of my personal space, but it was a long time ago.  I stopped doctors by hiding the free end of the lace (see arrow).  Now when I see a physician staring at the floor I know he or she is trying to figure out how to untie my shoelace.

I have yet to convince friends and strangers they cannot tie my shoes for me.  Even telling my friend I can tie my shoelace faster one-handed than she can tie her lace with two hands was not a deterrent.  My friend replied "I could tie your shoe at least once so you will not have to."  My next strategy to handle this interaction more gracefully is to say "Can you tie a shoelace that has only one end free?" See photo on right.  If this stops the angel from trying to help me I will finish with "Thank you so much for offering." 
Actually I tie only a half-slipknot shown in the photo on the right.  Even though this knot will hold all day long I do not like the way it looks.
I tuck the free end in to form a mock bow shown in the top right photo.

October 15, 2014

Mobility = Physical Recovery + Problem Solving

A study found that impaired attention and visual-spatial deficits 3 months after a stroke was significantly associated with a poor quality of life 12 months after a stroke (1).  Studying what seems like an obvious connection may seem wasteful if you do not know some therapists ignore cognition.  They focus on concrete issues like passive range of motion and strength and assume clients will know what to do with their physical gains when they go home.

Without cognitive skills I would not have the luxury of getting up in the morning whenever I feel like it, fixing what I want for breakfast, and sitting at the table after breakfast reading the newspaper. I used to drive 100 miles round trip to work so lounging after breakfast while other people are doing battle in rush hour traffic never gets old.

My recent post begging someone to teach us to turn while doing a task is a perfect example of what I am talking about.  Making multiple turns while concentrating on the steps of preparing breakfast requires constant attention and visual-spatial awareness.  I had to learn to pay attention to what objects are doing instead of concentrating on what my hands and feet are doing.  Squeezing Theraputty and walking in the PT gym did not make this possible.  Therapists who have a simplistic view of recovery need to incorporate cognition into their clinical practice.  Therapists and stroke survivors need to remember that mobility = physical recovery + problem solving. 

1. Cummings TB, Brodtmann A, Darby D, Berhardt J.  The importance of cognition to quality of life
    after stroke. J Psychosom Res, 2014;15: ??

October 4, 2014

Fitting Into Cracks Can Be Painful

I learned everyone has deficits when I took a course to become certified to administer tests for Sensory Integration.  My lab partner was in graduate school, but she had to look in the answer book to grade a visual test designed for children.  This made me realize that able-bodied people have so many assets they can compensate for their weaknesses without being aware of it.

A stroke puts deficits in my face.  One example is volunteering to be the Chair of Receiving at my church's Spring Sale.  I can purchase and organize supplies such as price stickers and tape, but I cannot carry them from the office up to the 1st floor when the Spring Sale begins.  I can give my Receiving crew instructions about what to do when donations arrive, but I cannot help transport the donations.  I tried carrying donations to rooms on the 1st floor, but ended up with back spasms because walking repeatedly without a cane makes me lurch side-to-side.  Not being able to carry donations to rooms downstairs is a slap in the face.  I used to be a therapist who lifted paralyzed people out of wheelchairs and now I cannot trust my hemiplegic arm to hold onto objects when I walk up or down stairs.  Asking people to do this for me is a repeated reminder that I am disabled -- a fact I can put out of my mind when I use a cart to transport objects around my one-story house.

Volunteering to help the Citizens Climate Lobby (CCL) is equally convoluted.  I have had six letters about climate change published in my local paper.  I love the challenge of writing 200 word letters. It is close as I will ever get to writing poetry where every word counts.  But I am disappointed that I cannot participate in rallies because I cannot walk safely in crowds that do not sit down. 

Finding things I can and cannot do is a trial-and-error process after I volunteer.  Sometimes it is hard for me to remember to be grateful that there are parts of a job I can do.  I am still learning how to explain this problem to others without sounding like I am whining.  Feeling useful takes a lot more work these days..

September 25, 2014

Guest Post on Swallowing Difficulties

      Research suggests that as many as 65% of stroke victims will suffer with swallowing difficulties on their road to recovery (see here). It can be quite a serious problem that requires a great deal of effort to overcome so how do stroke victims and their carers manage the problem of not being able to swallow food or medicines? The medical name for this condition is dysphagia. 
      Because swallowing is difficult, and in many instances painful too, it can be common to see patients lose their appetite. This is especially true of those who are bedridden and therefore get very little physical activity. If the patient can’t feed themselves and doesn’t want to eat it can be quite the challenge getting them to take on food. The recovery process is going to be that much longer if they don’t take on the much needed sustenance to keep their strength up in order to try and get back to better health.
      One of the best ways in which to combat the problem of a difficulty or reluctance to eat, is to feed the patient with pureed, minced or finely ground foods. Sometimes carers may buy ready prepared pureed food, much like baby food, although it is fairly straightforward to simply prepare your own using regular ingredients and a food processor. Whilst most meals can be reduced down into a puree, care must be taken to only mix together complementary ingredients. For example, emptying a whole plate of meat and vegetables into a blender might seem a simple way to serve up a standard meal but the contrasting flavours and textures can end up with a very unappetising and odd tasting brown mush. A far better technique is to puree ingredients separately, unless they complement one another. For example, you could easily blend carrots and rutabaga together to make a healthy orange mash, then separately grind some chicken or beef in a mincer.
      Besides food, dysphagia also presents a problem when it comes to administering medicine and it can be common to see stroke victims struggle with tablets and capsules. One method to combat this is to try and administer tablets within yogurt or a thick sauce, to help it slip down the throat. Stoke victims may not have the coordination to suspend the pill in the fast moving water so the pill can be swallowed. 
      An alternative to trying to take medicines hidden in thick liquids has been developed by medical associations and pharmaceutical companies who have come up with a range of liquid medicines to take the place of various medicines which would normally be prescribed in tablet form. Where in the past sufferers of dysphagia might have crushed up pills, which is dangerous and seriously inadvisable, there is now a greater availability of traditional medicines in a safe syrup format that mean there is no need to worry about administering the medication you or your patient needs. However, the number of medicines available in this format is still limited and it can be frustrating for sufferers to learn that their particular medicine doesn’t have a liquid alternative.
      There have been cases of patients remaining on feeding tubes indefinitely after having suffered a stroke and even in the most optimistic of cases it can take years of specialist therapy in order to return to a more normal routine of being able to swallow. However, there are cases of patients overcoming dysphagia and in such instances pureed food and liquid medicines can be seen as an interim solution to aid stroke victims on their road to recovery, giving hope to the sufferers that it doesn’t have to always be this way.

Jeff Nevil is a freelance writer with an interest in the healthcare sector.  He writes for a variety of online publications on the topics that matter to him including business advice, technology and pharmaceuticals.  You can read more on his personal blog at http://technoperative.blogspot.com.uk

September 14, 2014

SOMEBODY Please Teach Us to Turn

The photo shows the turns I take to prepare a glass of iced tea and a bowl of cereal with a sliced banana for breakfast.  The photo is so complicated I omitted the turns I make to get out yogurt to take my pills.  I will not even try to diagram the turns it takes to prepare a hot meal.  Walking in straight lines in the PT gym and walking around the block at home did not prepare me for this.  After I fell and broke my forearm while turning I got scared.  I learned to take itsy bitsy baby steps until I complete a turn before taking normal size steps in the new forward direction. 

Help is emerging.  Chen and associates trained stroke survivors on a straight or a turning-based treadmill (1).  See the parallel bars in the diagram. Subjects who trained on the turning-based treadmill were significantly better at turning 360 degrees and standing on a cushion with both eyes closed and arms crossed over their chest.  Turning away from a kitchen counter is done by stepping backwards as you turn so information from the inner ears about how far from vertical you have stepped back is crucial.  Paradoxically, the turning-based treadmill group also walked significantly faster in a straight line with more equal time weight bearing on each foot as they walked.

PTs and OTs need to incorporate these findings into clinical practice.  Learning to turn needs to begin with how to turn around after you shut the bathroom door and again after you flush the toilet.

1. Chen, I, Yang, Y, Chan, R, Wang, R. Turning-based treadmill training improves turning
    performance and gait symmetry after stroke. Neurorehabilitation and Neural Repair. 2014;28

September 5, 2014

Good Planning Skills Are a Blessing and a Curse

Being able to visualize the steps I need to orchestrate a complex task like the one below is very useful.  However, this skill also gives me time to worry about things that never happen.

Phase 1.  I planned to buy a new car before the end of the year.  First I visited Mobility Professionals to talk about modifying a new car.  I was appalled by the intense traffic on Route One in north Jersey at the mobility store.  I drove multi-lane highways to work for 25 years so I started worrying about pulling into that terrible traffic on Route 1 with an unfamiliar car.  Then I went on-line to see what 2014 cars were still available.  There was only one non-black Toyota Corolla within 50 miles of me so a commercial for the Toyota end-of-year sale sent me shopping.  I got such a good deal that I bought a car on Saturday, August 30th.  I kept my old car over the Labor Day weekend.  My new car would be delivered to the mobility store on Tuesday, September 2nd.  Because of the insane traffic at the mobility store I hoped they would keep my new car until the following Saturday when there would not be any work week traffic.  

Phase 2.  While I still had my old car I purchased car insurance for my new car which turned out to be fortuitous.  When my friend Suzanne showed up at Toyota to take me home after I surrendered my old car, I got a call from the mobility store saying my new car was ready.  The salesman had told me they would need two days to modify my car but the job was done in two hours!   As Suzanne pulled out of the parking lot she suggested we go get the new car.  It was such a relief to stop worrying about the arrangements I would have to make to find a volunteer to do this task. 

Phase 3.  When Suzanne offered to follow me home I said I wanted to move my new car around the parking lot to get used to it.  I startled her by taking off quickly.  Sorry Suzanne.  When I turned the spinner knob to back out of the parking space the new car felt so familiar that my fears melted away. When I saw a big gap in the traffic I pulled onto the highway. Buying a 2014 Corolla which is very similar to a 2005 Corolla was a great decision.

The 2005 Corolla looks the way cars have looked for decades.

The 2014 Corolla looks like the cockpit of a plane.  Numerous features are standard on every car.  The steering wheel has controls for the radio that I can operate without letting go of the spinner knob (see the black circle).  I cannot reach the buttons on the right side of the steering wheel that let me answer my cell phone.  I cannot believe this is now the cheapest model car Toyota makes.

August 26, 2014

Reviewing One-Handed Knives Again

I am reviewing one-handed knives again because I have found a rocker knife that actually works.  The dull rocker knife on the left cuts only soft food and sticks out of my purse.  I'm not going to buy a big over-the-shoulder purse that would hide this nine inch long rocker knife.  I have to push my purse to the front where it will not hit my cane.  I do not want an even bigger purse making my stomach look huge (vanity).

I love the Verti-Grip Professional Knife from caregiverproducts.com.  The rocker knife shown above is held horizontally so I create downwards pressure with my index finger.  The Verti-Grip knife has a is held vertically so my whole arm can press down as I rock the blade side-to-side.  The sharp blade cuts though steak and pork chops.  The Verti-Grip is only six inches long so it fits completely inside my purse.  It has a protective cover that slides off easily so I put a small zip-lock bag over the cutting edge to protect the inside of my purse.  The Verti-Grip costs $17.95 + S&H, but I think it is worth it.

August 16, 2014

Community Ambulation Falls Thru the Cracks

Walking on a deserted sidewalk did not prepare me for walking in crowded community settings, like maneuvering around carts and people in a grocery store, squeezing past closely placed chairs and tables in a restaurant, and dealing with children in a shopping mall who do not look where they are going.  PTs do not know walking requires divided attention, like anticipating where other people want to go while thinking about your own body, because PTs walk clients in wide empty spaces that provide no cognitive challenges.  Equally unfortunate, OTs who are trained to assess and treat cognitive issues, do not see community ambulation as part of their domain because walking uses the foot rather than the hand.  So community ambulation falls through the cracks.  Stroke survivors are left to figure out how to walk safely in the community.

A recent study addresses the unpredictability of walking in the community.  Inness and associates asked what stroke survivors would do when they were not told when they were about to experience a fall hazard  (1).  Stroke survivors were asked to stand with 1 foot on each of 2 force plates.  At an unexpected time a force plate tipped forward and subjects had to recover their balance by stepping forward onto a third force plate.  Everyone wore a safety harness to prevent a fall.  Classic clinical tests like walking speed and the Berg Balance Test were not correlated with the unexpected stepping test results. The 99 subjects who did poorly on the unexpected stepping test had the same range of Berg Balance scores as the 40 subjects who did well on the unexpected stepping test (Berg scores: 25-55 and 20-56 respectively where 56 is a perfect score).  The Berg Test has some high level test items like standing on one foot and putting a foot on a stool while standing unsupported.  However, on the Berg Test clients get to decide when they want to initiate movement and can concentrate fiercely on their own body.

Bottom Line: Being afraid to walk in crowded environments is a major barrier to participating in valued community activities.  Limiting gait training to walking in the home and going around the block contributes to social isolation and depression. 

1.  Inness E, Mansfield A, Lakhani B, Bayley M, McIlroy W. Impaired reactive stepping among
     patients ready for discharge from inpatient stroke rehabilitation.

August 5, 2014

Hidden Costs of Staying in Your Home

No rain water was coming out of the down spout of my gutter so I paid a handyman $40 to remove the debris.  Here are the three bags of stuff he pulled out of a gutter that collects rain water from one side of my house.  Forty dollars is a lot for someone on a fixed income, but a more expensive way to pay for yard work is to go into an assisted living facility. 

Three assisted living facilities near my home charge $3,000 to $4,000 a month.  These facilities pad their activity programs with Bingo six days a week and have small court yards with nothing growing in them so I am not talking about high-end facilities.  Paying $3,000 or more a month is an expensive way to get a handyman.  To see what assisted living costs in your state click on https://www.genworth.com/corporate/about-genworth/industry-expertise/cost-of-care.html

July 26, 2014

Things I Take for Granted

It has been 3 months since I visited a life-long friend in New Mexico.  I am still aware of how lucky I am to live at sea level in an area that gets lots of rain.  After suffering at an elevation of 7,200 feet in the dry New Mexico climate (5-10% humidity) I am repeatedly grateful for water.  Here a two examples. It rained lightly off and on during my first visit to Point Pleasant Beach after I got home.  Instead of watching pretty white clouds roll out to sea and feeling a cool ocean breeze on my face, I was thankful for moisture the rain put into the air I was breathing.

The first time I went to church after I got home I marveled at the trees I get to look at through a wall of windows.  I doubt that anyone has wondered if a prolonged drought in New Jersey would kill this species of tree.  These trees give me joy whether they are full of leaves or their bare branches are covered with snow.  Trees require lots of water, which is why you do not see trees in New Mexico.

When a psychologist in the rehab hospital asked me what I enjoyed doing I was surprised to hear myself say I was devastated because I would never see the Atlantic Ocean again.  One good thing about having a stroke is that it put me in touch with things that give me joy.  Water and the things it makes possible, like trees and flowers, consistently make me happy.  This is a primal need I did not know I had.