Hi!
My name is Evan. I’m 57 years old, and just suffered a brain stem
stroke several months ago. On
October 2nd I noticed I was a bit dizzy and my hand was
tingling. I’d been dizzy about a month
ago, when my wife, Mary, and I both had flu-like symptoms. We’ve usually worked through these kinds of
symptoms and I didn’t think too much about it.
I also didn’t think too much about the tingling in my hand, as it felt
like carpel tunnel symptoms, which I’d had before also. We were working at her
custom framing shop, where we had a rather large piece that we had to finish
that day. After finishing the piece and
finishing the day, we spent a quiet evening watching a movie and each had a small
drink. When I awoke the next day, I
still had the same symptoms plus I now had slurred speech. I figured I better get checked out, and we
went to the emergency room. We were seen
by a neurologist, who was also a long time friend of ours. After several tests, and evaluation, he told
us that I was suffering the beginnings of a stroke. Here’s the rest of the story….
It’s my first day of this stroke, a Friday, I’m quite upset and very frightened about my
present state and the future….lying in a 4-bed unit in the hospital, I’m surrounded
by 3 drug addicts. I didn’t think I was
a druggie but I guess the hospital thought I wouldn’t complain since I can
hardly speak and I can’t move my leg or arm.
I’ve no pad, nor pencil to write down my questions or thoughts nor can I
express my alarm about what I see them doing.
Security has been called twice, but these guys are doing whatever the
want. I can only hope they move me
soon….I’m scared!!
I’m worried for my wife. She is
my best friend and has been for over 35 years, but this must be so hard for
her, fear of the unknown, having to now handle everything about our lives. I hope that she can forgive me for this
second trauma in our lives, another life changing event. Got to rest, got to get better…for me, for
her…..
I’ve been
moved!!!! No sleep last night. I laid awake
afraid. Afraid of the present, afraid of
the future, and very afraid as to the threats against me by these druggies if I
talk about any thing I saw. This morning
2 of them have been “discharged”, and one is too sick to do any thing. My “new” room is a private room, not very
attractive, very, very small, with a small window near the top of a wall. I would have preferred to stay in my previous
room and had different roommates…..what is today going to bring?
Now my 3rd
day, speech is very slurred, more loss of sensation in my leg and arm, it’s a
Sunday and didn’t expect the Doc but he came in. He feels that the stroke probably has almost reached
its peak. Mary went home last night and
with a lot of creativity, came up with a 3-Stooges approach to speech
therapy. It’s great, and easy to
remember! The doctor
who is also a good acquaintance, also recognized the limerick right away as a
3-Stooges thing. Also,
very funny. I can’t begin to
express how I feel my lifeline is my dear wife, and also my protector. I feel very defenseless in my present state,
can’t move, hardly can speak…so very used to taking care of myself….difficult
to fully express. Mary helps me with my
bathing and personal needs. It must be
so difficult for her. I’m more helpless than not…got to try and do more…hope
this doesn’t get worse.
Emotions…since
I’ve had the stroke, every time I talk to anyone showing love and concern, I
cry uncontrollably, it is really
something. Mary has encouraged me to try and think of something funny. It works
sometimes. Good advice. She has told anyone I talk with to try and make
me laugh. I’m told it should diminish,
let’s hope.
It’s now
Tuesday, the fifth day. Seems like 10 or
15 days. I’m to be moved to a rehab
hospital. They evaluated what I could do
physically, speech is the same, maybe somewhat better.
A nurse came in this morning and gave me insulin before I could stop them. They did not look at my name band nor did
they ask me my name. they
gave me the shot before I could question them….fortunately my wife just walked
in and I told her, and we got some juice and sugar to counter the effects….I
hope they know what they’re doing at the rehab hospital !!!!
It was a long
ride by ambulance, but we are here!!!!
Very nice looking place, big room, only 2 beds in the room, no roommate
yet. Many questions by many people, too
many names to remember, very tired from the trip, but it is the FIRST day to
the way back. Thinking on the way up
here… this is
MY job now. If I want to get better, try
and see humor in all this, and work my ass off.
Let’s hope.
Went to my first sessions of therapy. Mostly evaluations, but they seem to know
what they’re doing. They asked me my
goals….too lofty…had to settle for less with them. In the back of my mind, I think…still want to
walk, talk, and use my hand… it’s going to be a long process.
It has been a
week since I started rehab. Each day I
get washed up by the nursing staff. If you’ve ever gone through something like
a stroke or another disease or surgery, you quickly learn that modesty and
privacy are no longer an option. With
the leg and arm not working, it is very difficult to do such simple things like
dressing yourself. That’s OK. All the nurse aides that
have helped me. did their best, and I’m no
little person, difficult to dress, and hard to move. Plus, I have a left below
knee prosthetic leg. And all with good humor!! I get up in the wheelchair
provided to me, and get wheeled to the rehab department. It is a large room with much equipment, and
many therapists. With all of the
patients interacting, it looks like a well choreographed dance routine. As I sit waiting my turn, I see so many
patients trying so hard, with the therapists focused on their individual
patients. So many
patients with physical challenges, some much greater than mine, some with no
hope of recovery. I consider
myself lucky to try and recover from only this stroke and to have such support
that I have. We tried walking in the parallel
bars today. Walked
about 4 feet, not able to move my foot or leg much. It was shaky but sure felt good. I see some voluntary movement in one finger.
Major milestone, and hopeful that more will come
back. They keep asking me if I have any
pain. No….why do they keep asking? Will
I eventually feel pain?
Therapy – I’ve already
mentioned the rehab department, now I’d like to tell you about the
therapists. I have three therapists
assigned to my case. The first is a
speech therapist, with whom I spend an hour a day. She runs me through a series
of mouth exercises and sentences, as well as other therapies. She feels I
should get better, and is aware how much more slurred I am as I get more
tired. My physical therapist, Sherri, whose
focus is the leg is very young but very energetic, she doesn’t hesitate to put
me through the paces, and believe me, an hour with her is a long hour, and is
very tiring. Finally, the occupational
therapist, whose job is my arm and hand, as well as ways to do personal care. Her name is
Patricia, and she is just full of energy and humor. It’s amazing that she is the image of a good
friend of mine. They could easily be
sisters, not only in appearance but in personality. It seems like when ever I work with her, I’m
working with my dear friend. I look
forward to all of my therapy, every day, because of the hard work we do, what
progress we make, and for the good spirit and humor of the therapists.
Rehab dining
– with my speech being slurred and other physical limitations they have me
going to a dining room to eat. Its staffed during the day by the speech and occupational
therapists. After having an oversized
disposable “bib” placed on me, I get a tray of food. At first they assist in opening all of the
containers, but I’m determined to master this task. Have you ever tried to open a cardboard
container of milk? How about a plastic
juice container with a thin metal lid that must be peeled off?? And remember, you only have one hand. It can be frustrating, a challenge, but also
funny…to say the least. They’ll help me
if all else fails, but the purpose of rehab dining is to see if you can find a
way to feed yourself and also to see if you can chew and swallow. No problem with the swallowing part, but for
me chewing is not what it was before the stroke. There are about 20 others in the room with
similar difficulties, some not so much, some much worse. Being a rather large person, you can see I’ve
never had a problem with food, other than too much. I was determined to master
the tasks of self feeding. Again, in a
room full of people, the isolation I feel because of my poor speech, in wanting
to talk, is very difficult to accept. It
will get better, I have to hope.
I got a new
roommate today. He’s an older gentleman
who also had a stroke. He seems somewhat
confused. His wife says that he’s been
that way for over a week. He is very
unsettled and doesn’t want to stay in his bed.
Come 8pm that evening, his
wife went home. He is more confused and
combative. After medication, he quieted
down a little. It is difficult as we are
in the last room before leaving the nursing unit, along way from the nurse’s
station. He started to rise up in his
bed, hollering that he wants his wife, wants to get out of the bed, etc. After trying to climb out of bed, I rang for
the nurse. She tried to come in to
orient and calm him. He quieted until she left the room. Because of my speech,
I’m not sure I was able to communicate how agitated he was. Now alone, he is sitting up and agitated
even more. He is beating on the window
right next to his bed, and trying to climb from the bed. He’s going to fall. I called the nurse again. She came in and seemed more disgusted with me
than him!! He quieted again while she
was in the room, and got agitated when she left. He climbed over the bed rail and fell!! In his confusion, he must of
thought that he could stand on his stroke-affected leg. I pulled the call bell from the wall, and
they all came running. I felt bad for
him, and bad for the staff. Fortunately
he only got bruised. They put him in a
wheelchair and called his family. I hope
he does OK…..
2 weeks
now. I have one therapist who focuses on
the leg, one therapist for the arm, and one therapist for speech. Not much has happened with the leg and arm,
but speech is definitely improving. I
never really lost any ability to think, and my mind is sharp, but my speech has
been poor. So poor, in fact that if I’m in a group setting, I speak very
little. This is tough. I’m a talker as my wife can attest. Living in my head is so hard to do. I want to engage in conversation and answer
the occasional question or make a comment, but my speech is slow and very
slurred. I can think it but I can’t say
it. It not only makes me feel bad, but
I’m embarrassed. I hope it gets better,
sooner.
About the 18th
day…..I went to rehab and they moved me into another room, with a room mate,
much older but seems nice. Wife is very nice. My biggest problem is the room is turned
around from the way I was used to.
Doesn’t seem like much, but I can only get out of bed on one side, and I
can only reach things with my left arm.
Every thing is right hand oriented.
Such a minor change, but for me a difficult change. The reason for the move is to clean other
rooms, which is OK, hope it works out.
Went to sleep about 8:30 pm…when
the sun went down and my roommate’s wife left, he got very noisy. They gave him something to sleep, and it
worked for about 30 minutes. I just
dozed off, and woke up when he started hollering. Called the nurse, unable to do anything more
for him other than try to calm him down.
Stayed awake all night listening to him holler, will be little good in
physical therapy with no sleep. Will need to move to another room. This is a very frustrating experience. I can’t express myself clearly, not taken
seriously, very tired….
My wife has
been so wonderful through all of this.
It has now been a month since the stroke. She’s provided me with love. Brings me clean clothes and personal items,
helps me with a shower and many things too numerous to mention. The stroke victim’s life is easy compared to
the primary care giver. So much pressure, so much to do. Contacting family, friends,
taking numerous calls, always answering questions about my progress, asking the
doctor and staff questions about my care that I cannot express. Trying to get the house set up for my return,
herself having so many questions and concerns.
It is so very hard to express my feelings about how much she does and
how much she means to me. I worry about
how tired she is, how depressed she might be, how this burden is affecting her
health and well being.
I’m so
fortunate to have such good friends and family.
Mom and Dad visited again, we played a game for a few hours. It was great to see them, but they look
tired. Many cards,
many phone calls from friends, my sister, my mom, neighbors, even customers of
mine. Visits by
dear friends and neighbors. Visits by family. It means so much.
Self- care – As I said earlier, Mary and the nurses aides
have had to bath and dress me each morning due to my inability to move my right
arm and leg. Well, the movement hasn’t
improved much, but I can do much more than before. The therapist taught me how to put on and
take off my shirt. The first couple of
times it took me about 20 minutes and a lot of laughing at myself, but I got so
I could do it myself, in about 2 minutes.
After getting my “legs on” and up in the wheelchair, I get myself over
to the sink. I’m able to wash my upper
torso, face and hair, brush my teeth, shave, and change my shirt. It’s a great feeling…a little more
independence.
Four weeks
now since the stroke. They’re talking
about sending me home in another week or so.
The house is set up, Mary’s rearranged her work schedule, we are awaiting a motorized wheelchair. I’ve walked some, using a special walker and
assistance. I’m hoping I will increase
my walking time every couple of days. Can move 2 fingers and
my wrist a little. Its progress, not much, but progress. Not for want of trying, by me, by the
therapists, by Mary. It’s going to take
awhile to recover from this. It seems
like four months already. I must keep
working, and remain hopeful. In order to
go home I have to be able to step up on one step to get in the car. I told the therapist and she immediately had
me try a step. Couldn’t
do it on first try or second try.
I’ve got 6 days to master this small feat…”one small step…” and all
that.
2 days before
going home. I’ve had a very long bad
day. Not much sleep, nurse forgot to
help me get out of bed this morning until well after breakfast, missed breakfast,
didn’t do very good in physical therapy today, very, very tired. Ready to get in bed.
But wait…BIG surprise…Mary arrived with my new power wheelchair!!! She got the chair today, uncrated it, loaded
it in the car and drove all the way up here so that I would have it. I couldn’t ask for a more loving and caring
friend. I have to make progress, despite
minor set backs. Freedom, no longer
confined to a small space in my room ….you can’t begin to know how much this
means. Since I can only use my left arm
to propel the manual wheelchair, I’ve only been able to go in circles next
to my bed, I must rely on others for assistance to PT or anywhere else. Now I
can go almost anywhere, myself! We went
outside while Mary was here…went to the lobby….I’m ready to make an escape..ha,ha. As discharge approaches, I couldn’t have a
more perfect tool and gift!!
I’m so
excited…I’m going home today. It’s very
emotional for me. Exciting,
but fearful. Will I make it into
the car? How much help will be
needed? How about getting into the
house? Mary’s planned it all out, and it
should work. Here’s hoping…..
After some instruction to Mary by the therapists, and
arrival of a special walker, we’re out the door. It is only a bit over 1 hour ride but seems
much longer. I just realized my eyesight
is not just right. I also can’t hold
myself upright in the car seat. 2 more
things I’ll overcome. We’re
home!!!! I see our dog, stormy. She has
been so confused for the past five weeks.
I’ve not been there and Mary has not been there but to sleep, and feed
her. She recognizes me but is a bit
wary. With much loving to both my ladies
I hope to soon be part of our little group that we call a pack.
It’s been a
week since I got home….how does it feel?
I have mixed feelings. It feels
good to be home, but it is difficult to adjust to a different routine. I’m more in control of my routine along with Mary,
but I feel more helpless in some ways. Mary did a wonderful job setting up the
second floor, where I spend most of the time.
I have a table to sit at, she moved a microwave and refrigerator next to
the table, and surprised me with a beautiful lift-chair that she was able to
get second hand. I spend most of my day
in my wheelchair, and nighttime in the lift chair. It has built in heat, vibration, and reclines
all the way flat. Just a wonderful chair, and another
tool to help me as I recover. Speaking
of tools, at the end of my story I’ll list some of the wonderful resources and
useful items we have found to assist me in this long recovery. I do a series of exercises every morning for
both the leg and arm. In the afternoon I
do more exercises including mouth and speech exercises. I’ve been fortunate to have visitors every
couple of days, and lots of food when they come. This has been great as it cuts down on Mary
having to cook.
3 weeks,
home, 8 weeks since the stroke….closer to Christmas…not as many visitors….as
usual, Mary is very busy at the store for the holiday season. I started PT locally, twice a week. Its an ordeal
physically just to get there and back.
Each session is 2 hours, an hour for the arm and then the leg. It is very physical and very demanding. Is it helping? Its hard to tell,
very small increases in movement and strength.
It also wears me out for the next day.
It’s a long slow process, but they really know what they’re doing, so I gotta hope this’ll do some good. Also, I have to cut back on the food. I’m not as active and don’t need as many
calories.
10 weeks….we’ve slipped into a routine, now. Mary, and I worked
very hard and now I can get myself on the electric chair lift from the second
to the first floor, go down stairs and walk into the dining room for meals,
then back on the chair to return to the second floor. Its not far, but
certainly progress. Just
had the plumber in to install bathroom handicap-type faucets and a handicap
toilet. Another
major assist. I can wash up at
the sink more easily, and take care of other personal needs myself, no
assistance needed. Drove my wheelchair
near the laundry room, and using the quad cane, walked in and put in a load of
wash. This is one more thing I can
assist Mary with, small, but something that gives me hope that I’ll do more. Have you ever tried to fold clothes with only
one hand?? It’s frustrating but funny
all at the same time. I’m doing
it….well, at least most things. I can’t
fold the sheets, not yet anyway, way too big.
Computer
work…..well now, there’s a challenge!!
Since I came home I’ve been playing at the computer. Before the stroke it was a major part of my
life….web design…graphics work….teaching…all for several years. Not a major money generator, but something to
keep me stimulated, and very enjoyable.
Since the stroke, I’d be wondering if I could concentrate to do the
work, and how would I do using only one hand?
Well, here it is. I am able to
concentrate, for short periods. I’m able
type one handed, but find it interesting to try and use any shortcut keys, or
the shift keys when I type. I’ve been
able to write and send e-mail, though all in lower case. I’ve written some minor web pages, and
modified others. I’ve used the word
processor, especially since it has spell check.
The biggest problem has been not hitting more than one key at a time, or
hitting the “caps lock” by accident. I
backspace and retype, a lot! I’ve
modified some graphic files and was able to print them. As I don’t go out much, there’s not much to
take pictures of, but I’m not able to work my digital camera, as it has a
right-handed button. As far as I can
tell, all cameras have the shutter button on the right side….not gonna work. I think
if f I get a small rectangular camera, I think I can invert it to use in my
left hand, leaving the settings on automatic. I think I’ll try and borrow one
first…..one more interesting observation re this stroke.
Reality check
– it’s now been 11 or so weeks since my stroke occurred. That’s a little over 2 ½ months. When this all started, I had hoped to be up
on my feet and walking. If not walking,
I expected my arm and hand to be functioning.
How has it turned out so far? Not
happening on either front. Yes, I can stand and walk for very short distances, and only with an assist by using my
walker/cane. Not only is the
stroke-affected leg very weak, my left prosthetic leg is no where near ready
for sustained walking, and my balance is still very poor. I can move the hand,
and make a fist, but grip strength is low, wrist movement is limited, and the
upper arm and shoulder are not there yet. Discouraging? You bet! I now feel that it’s going to take
at least 6-8 months, to see if any of this might be a reality for me. Remember, everyone who suffers a stroke,
responds and recovers differently. All
of the stories I’ve read show any where from 2 months to 3 years or more. That’s MY reality. I’m not responding as fast as I had hoped,
but I am still responding, and can only hope it continues…..
3 months and
counting….over the last 2 weeks there have been some highs and lows. The doc told us that if a stroke would recur,
it would most likely occur within 3 months.
A couple of days ago, my speech became a little more slurred than it already
was. Another stroke? That’s how the first one started. No other symptoms as of now,
and the speech has improved again.
Christmas was quiet for us, not really exchanging gifts other than our
love for each other. She gave me some
art supplies to try my hand. I gave her
an order of seeds for her garden. We
were surprised by dear friends with a very nice gift of a TV to replace our
very old one. Such
wonderful friends. Speaking of
good friends, we just lost a very dear friend….it is a very sad time. He just visited a week before. Mary set up a “walking arena” out on our
deck, of about 90 feet. She closed off 2
small areas of this railed-in area to complete the loop. I’m able to walk this area, at least twice a
day, some days more….a great idea….lets hope I can build on my current
strength. With Mary’s help I went down
to her framing shop, and helped clean up after a very busy Christmas
season. Each time, we were down there
for about 2 hours, before returning home.
It felt really good to be contributing again, even if it was only for a
few hours. What will the next 3 months
bring? Can only hope things will continue to improve. There will be many boring hours, but must
stay busy, do my exercises, and work toward that goal of walking and using my
hand some more.
3.5
months…..two weeks since I last wrote anything. It’s been a long 2 weeks. It is
wintertime and cold, house is warm, but not too warm. It is somewhat difficult to regulate
temperature for me. Something you must think about if you have limited feeling
in your affected limbs. Right now, I
cannot use the outdoor walking spot we set up.
The deck is cold, and somewhat slippery from
the chronic rain. I’m focusing more on
standing and balance right now. I’m also
trying to strengthen my calf muscles, and hamstrings. My hand and arm are about the same in
recovery, but dealing with continued shoulder pain, hand pain, and surface
“burning” sensation from the wrist down.
Very happy to be able to help out in the kitchen. I can prop myself at the sink to wash dishes,
and getting skilled at prepping dinner from the wheelchair. These are very minor tasks, but helpful to
Mary, and my usefulness.
The human body is such an amazing machine. It’s now 4.5
months, a month since I last wrote an entry to this journal. The pain in my
shoulder and arm has decreased quite a bit. It’s not entirely gone, but much
better than it was. The shoulder has come alive more, not near as “locked” as
it was. The leg is waking up and getting stronger. Why? Time and exercise. I
go to physical therapy once a week, and exercise faithfully every day. So
important to this healing process is that exercise. I can’t stress that
enough. Since coming home from the hospitals, I’ve been going to
Bayside Rehab in Belle Haven, Virginia. My two therapists are Scott and
Leslie. They and the rest of the staff are wonderful, skilled and dedicated to
me and all of their patients. They each focus on different parts of the
stroke-effected side of my body. Is it tough? You bet it’s tough. The next
day, I usually feel like “xzh!%&fg#&%!” Is it worth it, in other words, am I
making any progress? You’ve read here how I have progressed over the past 3
months. Having someone who knows the human body so well, and understands so
much about the mechanics and how to assist the healing process is so helpful and
important. It’s going take much longer, getting the arm, hand and leg going
like it should, and even if I cannot get it all back, I’ll be so very grateful
for what I do get back. Don’t even consider trying this recovery process
without a good physical and occupational therapist. It’s also up to you, the
stroke victim, to keep up with the exercise, every day you can. If you are the
care giver, push that exercise as much as you can. You may even want to
consider trying some of those same exercises yourself, as able. It will make
you stronger and more able to assist, but also help you with your own state of
well being. I guess I’ve been preaching a lot in this paragraph, but I know
through living this recovery, it’s helping me and those I’ve seen at Bayside.
My wonderful wife has improved herself, physically and mentally by following an
exercise program. Of course, she checked with her physician about her present
health, as you should too.
Not much has changed since I last wrote,
except that I finally finished most of this website. I've already gotten
good comments, and suggestions for other resources. That truly lifts my
spirits. I hope that comments will continue to be sent to me.
I don't know if I mentioned it before but my nephews
helped add on to the concrete base of the wheelchair ramp at the back of my
house. This is a great benefit, in that I can now go out our gate, and
down to Mary's shop more easily. This is another path to freedom.
Mary's sister, Carol and her two sons, David and Glenn, have been a great source
of comfort to Mary and I. Pain in the arm and shoulder has decreased a
little, through the efforts of my therapist and continued exercise. Again,
I cannot stress the importance of continuing exercise to my recovery. Even
on those days when I am very tired, I have to try and do some of the exercises.
Heroic? No, just something you have to do. Don't give your care
giver, or your therapist a hard time. Just like me, you, the stroke
victim, have a job to do. Even if you are depressed, like I am sometimes,
you have to try.....
Minor frustrations...major chuckles...I meant to write
about this earlier, but now is a good time. Being limited to only one
useful hand and arm, there are so many things that are much harder. Many
times, I'm sitting here in the wheelchair laughing at myself because of
these challenges. Do you remember the fast food radio commercial that
talks about breakfast being easier at their restaurant? It starts out
"twist...twist...twist..." It refers to guys having problems opening a
bread bag that's closed with a twisty tie. Well.... it was bad enough
sometimes, for me, when both hands worked. Try it now with one hand, and
blurred vision. Yes, frustrating, to say the least, but so funny !!
Once I get the twist tie off, re-close the bag with a large clip , or when I
have enough bag available, I twirl the bag on itself...no twist tie.
Another funny challenge is a new box of cereal. I know they are trying to
keep the cereal fresh before purchase, but come on. Those plastic bags are
so tough and so sealed they are almost impossible to pull apart. With one
hand...impossible !! What I do is cut the top off of the bag, and then lay
it on a table. I place a large zippered plastic bag over the opened end
(still not easy), and then upend the cereal bag. I'm not always
successful, and cereal ends up on the table, or the floor but with the cereal in
the zippered bag, it stores easily and stays fresh. when ready to use, I
open the bag (usually with my teeth and hand) and take out 2 handfuls, rather
than try to hold and pour the bag. Next, medication bottles...anyone who
is older or has arthritis knows those over the counter medications have child
proof caps on them. child-proof?? Try, human-proof. What about
prescriptions? The good thing about those is you can ask the pharmacist to
give you easier opening bottles. What works for me with over-the-counter
meds like pain meds is to get smaller bottles of the same type, and leave off
the lid. I refill those bottles from larger bottles, less often.
Now, you should be careful, especially when young children are around, but this
works well for me. The cap on the toothpaste is something else,
again. the best way to handle this is to place the tube on a flat surface,
pointing away from you. Grasp the cap with your thumb and index finger,
then grasp the base of the tube with the other fingers. With practice, you
should be able to remove the cap, without dropping it on the floor (most of the
time). Lay your toothbrush on a towel or another flat surface, squeeze out
the toothpaste onto the brush, then recap, the same way. One last
frustration - plastic trash bags.....we buy bags from one of the large
warehouse-type stores. Prices are great and they have the different sizes
we need. now the problem - they are folded so "dern" tight, they are very
difficult to open, and that's for people that have 2 good hands. If you watched
me try to open one of those bags, you'd cry from laughing so hard...I use my
good hand, my teeth, other parts of my body, whatever will work. It
takes me awhile, but I eventually get them open...phew...These are but a
few frustrations....most of which at first were anger-inducing, but now I must
laugh....twist...twist...twist...
A new exercise....just like I need another
exercise to remember? Before the stroke, I made a half-height step for
Mary to use in the shop to assist with some non-powered equipment. We've
been using it as a step to assist getting in the car. Before I left the
rehab hospital, I asked the therapist to help try and negotiate this one step,
in prep for going home. Now four months later, I'm using that step to do
"step aerobics" as Mary calls them. The step is about 6 inches high, 24
inches wide, and 18 inches deep. we place it up against our upstairs
railing. I hold onto the top of the railing, and step up onto that step,
about 30 times each session. Now, I've been walking for sometime, around a
small area that also has a railing, but this exercise is waking up other leg
muscles that haven't woke up before. Mary stands next to me for balance
support, and encouragement, and we've only started this about a week ago,
but so far, so good.
March 19 - Not much new to write,
6.5 months since this all began. I continue with sporadic physical
therapy, only sporadic, and that's my fault. Money and time are both a
factor in dealing with this stroke, as you might see posted on the Comments page
from Brenda, who wrote about her son, and their limited resources. I'm on
a fixed income, and with everything costing more and more, what with the economy
right now, and limited insurance through Medicare, I am forced to make tough
choices about where to best use my income. Now, don't get me wrong.
I am not saying anything bad about Medicare or going to physical therapy, but
the money only goes so far, so I have to cut back on what I can afford.
Everyone these days has to tighten up, just to survive. It basically
means that I have to do even more on my own, in trying to rehab, with my
therapist's help. Remember, in the last paragraph, which was about 3 weeks
ago, I talked about doing "steps" to strengthen the stroke-affected leg.
Well, I'm up to about 50 steps a day, and can do it now, unassisted. I
think I surprised even my therapist, by going up a couple of steps, without
help. I think she was a bit nervous about it, as she made me wear the gait
belt. No problems. I asked her if I could try a stationary bike
and/or a treadmill. Mostly because of my prosthetic leg, I couldn't do the
stationary bike too well, however, I was able to step on to the treadmill, and
walk it at a very slow speed. I'm hoping to find a used treadmill.
That way, like everything else, I can exercise, first with assistance, and
eventually, alone. Pain in the arm, shoulder and hand remains a constant.
It is a bit less than before, but the pain in the bicep and the shoulder are
self limiting. As overall progress is measured in very small microscopic
steps, I can only hope that it will continue.
April 2 - Tomorrow is the next month
anniversary. I was thinking today, how excited I was to be able to move 1
finger, after no movement when I was in the Rehab hospital. Last evening,
I tested my grip. I'm able to move all fingers, although not normally yet,
but able to grip some things, like jars. Fine motor skills are lacking.
Will there be more improvement? I read that you get back most of what you
will within the first 6 months, and through training and exercise, more may
return. I continue to do my steps, unassisted, but coordination and foot
placement are tough. I got the loan of a manual treadmill from wonderful
friends, and I've walked on it a few times, but again, it's a foot coordination
problem that is limiting. I'll keep trying to walk on it, with my wife's
assistance, but will try to find a powered treadmill. Went to the doctor
this week. She adjusted the BP meds, by raising the dose. It helps
with the BP, however it really makes me tired all the time, plus some insomnia
is a problem. I also had some minor surgery on my foot, that's been giving
me problems for a couple of months, but with care and antibiotics, things are
improving. Lastly, for this entry, I want to again say how important humor
is to me, in my recovery. My friends and family send me some wonderful
jokes and other stuff by email. I'm happy just to hear from them, and try
not to burden, too much.... Today, I got a small movie featuring 5 young
ladies singing the National Anthem at a basketball game. What wonderful
voices, and the harmonies are great. It wasn't a funny, but was great to
watch. I've included the movie on my website.
Click Here to download. (caution- A
higher speed connection like DSL is suggested). Well, until next time....
April 18 - Income taxes are finally
done.... It's now fully spring, the flowers are in bloom...it really is
beautiful....life is fairly good and life goes on. Exercises continue at
home, with small gains. The hand is stronger, not as much arm and
shoulder pain, and the leg is slightly stronger. How's my mental state?
Fairly well, considering, but not really thrilling. I guess the daily
routine and the slowness of progress are getting to me. I had hoped to be
further along in recovery. Every body I see says, "you're doing so well"
In reality, I am, somewhat, but I feel its what they want to believe. They
need reassurance, too. Most only see me when I'm at my best, in the
morning...they don't see me when tired, when frustrated...when physically unable
to even move, so dependent on my dear wife. I don't say much, as that will
be more hurtful to them. They want to see there is progress....I may be
way off base, but they have this need, in some ways more than me. I think
they see themselves could be in a similar situation, themselves or with their
family. There are two major physical issues besides the arm and leg.
Hiccups and excessive yawning accompanied by spastic muscle contraction in the
affected limbs. Both occur whenever, without warning. The yawning
with the contraction can be very painful, and is really a pain, when it occurs.
It is worse now, than a couple of months a go, and web searches have not been
much help. The scientists and doctors have a few theories as to cause, but
only minor studies have been done. I sure hope this yawning and the
hiccups subside. I'm going next week to get a new prosthesis for my leg.
I'm excited, but nervous. This could really help my walking ability.
It's been a few years since my last fitting.....time will tell......
May 22 - Wow, its been a month since I've
last written in my journal. Its not that I've had nothing to write, but
I've been a bit busy. First, I've finally got my new leg prosthesis from
Hanger Prosthetics. In only 2 sessions, they did a fantastic job. I
did not realize just how bad the older one was as far as fit and being
oversized. It has made a tremendous difference in my ability to stand,
pivot, and walk. I still am able to only walk short distances with much
assistance of my 4-point cane, and only on very flat surfaces. We just
purchased a Rolling Walker. It has 4 wheels. 2 of the wheels pivot
and 2 are fixed. On the handles are hand brakes, and it has a seat.
I really haven't attempted the seat, but I find I can walk in a more upright
position, and I use the seat to carry things, moving from place to place.
I mentioned earlier that I wanted to get a used treadmill. This rolling
walker almost replaces that. I'll have to see how I do. I'm on my
second day of a different blood pressure medicine. So far its been much
better for me than the other medication. I'll let you know how I do with
it after a few weeks. I don't know how many people have seen this journal,
or even the website, but I've met someone who has, and we have been
communicating by e-mail. His name is Jim Ellington. You'll see a
couple of paragraphs from him in the Comments
section. He is a fellow stroke victim, with many of the same experiences,
and a few more. He and I are working together on a project, that has begun
to consume a lot of my time. We are well into the project, and I plan to
write more about it in my next journal entry. Its now been 8 months since
the stroke. The doctors told me to try and stay calm, no stress allowed.
Its been tough. We've had some horrible weather catastrophes here in the
US and around the globe. Gas prices have gone through the roof, with no
end in sight. Food prices have sky rocketed. Things are bad all
over. How does one not worry? I don't know the answer to that
question, but just to keep occupied with other stuff. My wife has planted
a big garden, with help from her sister and nephew, which should help some.
We try to combine as many errands as we can in to any car ride, to save gas.
We've kidded about "riding bikes". Yeah, right! Between her bad
balance on a bike, and my two somewhat useless legs and bad balance, I don't
think we'd get very far. We've been going through the house taking
inventory of where we can save electricity. The weather? Not much we
can do to influence that, except to diminish our "footprint" for global warming,
and hope for the best. I think my mind has begun to turn more away from me
and my journey, and toward others, and what is happening. Lets hope that I
can keep the stress level down.
May 28 - I said I would talk about our big
project in this writing, but its been a really bad week, so I'll write soon
about it. I told you about the new blood pressure medicine last time.
Because I was on Lopressor before, I had to taper off of that drug, as I started
this medication, Procardia XL. Well.....on the last day of the tapering, I
became jittery, had feelings of severe anxiety, my heart was pounding with least
little exertion, and I felt like I had just crawled a 26 mile marathon.....weak,
exhausted....and my blood pressure was again elevated. A call to the
doctor, and a second medication, Catapres was added. BP came down,
feelings of anxiety, and jitters went away, and pounding heart subsided.
Overall it was a difficult 5 days, to say the least. My doctor and I are
still working to adjust to the proper dose, but hopefully things will work out.
As a retired nurse, I had the knowledge of all these possible side effects, and
often counseled patients on this, but, believe me, its one thing to know, and an
entirely different thing to experience.
June 20 - Well, I last told you about the Catapres. Its now been over 3 weeks and BP is under control. Moving
on... If its not one thing with this recovery, it's something else.
I had gone down to my wife's shop, to help paint the exterior, from my
wheelchair. It all went very well. I can paint from the ground, up
to about 4 feet. My shoes look a bit spotty, but did ok, overall.
Now for the bad part...I was coming back home, via the wheelchair, as I had done
about a dozen times. Except this time, I failed to reduce speed before
entering our driveway. I tried to negotiate the slight rise at the
sidewalk, and flipped the chair backwards, hard, and slammed my head on the
concrete. After an ambulance ride to the hospital, a CT scan, lots of
blood, some repair work, and some embarrassment for being stupid, we returned
home. You see, I'm on Plavix, which acts to thin the blood, along with
aspirin, low dose, so I know to be extra careful with sharp objects, and near
anything that might injure. My wife and I knew that the crack to my head
could cause a bleed, and as it turns out, it did. Fortunately, it was
relatively small, and a second CT scan revealed that the injury was
resolving....Duh...as was said in the movie, Forrest Gump™,
"stupid is as stupid does". Take it as a lesson, all you electric
wheelchair riders, too fast is just that, TOO FAST.
One final thing for this entry - I've
strung you along for a month on our "project". Well, Jim Ellington and I
are writing a book, together. We're using email to send it back and forth,
as we write. Its a wonderful collaborative effort. We've completed 8
chapters, first draft, with 3 more in progress. It's to share our
experiences as we recover from stroke, good and bad, as well as resources that
have helped. we have a chapter about medicines we're on, a special chapter
on the caregiver's perspective, one on intimacy after stroke, and a chapter on
the physical therapist's perspective. I don't know if I can get it
published, but I'm hopeful. I live on a fixed income, so vanity presses
are out of the question. It will be a great read for people who are trying
to recover from a stroke, like Jim and I. It should be good for
caregivers, and any one else who has an interest or perhaps someone they know
going through this experience. It also would be a good read for health
care students and professionals. Wish us luck. It has been an
enjoyable experience, for both of us. Til next time......
July 16 - 8 1/2 months since the
stroke.....its been about a month since I wrote last. its been a very busy
time. Jim and I have been busy with the book. I'm starting to get
the editing done. We've been reviewing what's been written so far, and i've been reviewing possible publishers. Health-wise, I've not written
much about stroke recovery for a while. My legs have gotten a little bit
stronger. It makes it easier when I stand and move from my wheelchair to
another chair, work at the counter in our kitchen, and do other small chores,
like putting clothes into the washer or dryer. My wife mounted the laundry
basket on to a rolling cart, so I can move the basket easily from the laundry
room, to the bed, where I fold the clothes. I told you about the rolling
walker a few entries ago. I'm now using it to get around some, downstairs,
where there is more carpet. Believe me, carpet is a whole new challenge
for a stroke survivor, especially if they still have foot drop. it is so
easy to catch your toe, and can be bad news if you can't catch yourself.
my hand is slowly improving, especially large motor skills. I use it more
than I did, but fine movements are still lacking.
There are two more useful items that i
want to tell you about - Remember when i talked about the single step that we
made for stepping up practice? well, duh....we were watching a step
aerobics class on TV a couple of weeks ago, and gee, what were they using?
a very simple step, light in weight, wide, and cheap. We found one at our
"local" Walmart. (less than 30.00) It works wonderfully, and is easy to
move. If this is an issue for you as a stroke survivor, or you want some
extra exercise, check it out. The other item is a "stepper" (found at
www.Amazon.com for about 60.00) I was
looking for something I could use to improve leg strength while in my
wheelchair. Unfortunately, it doesn't really work, sitting down. it
takes too much push, and the chair or wheelchair tips back. what I found
is that I can step up on to the pedals, holding onto our banister, and give my
legs a good leg-pumping workout. It can count the reps for you, and show
you calories burned. I started with 10 reps, and now have worked up to 80
reps per day. its not much yet, and can be exhausting. I'm starting
to show some more leg strength.
September 9 - It's been a
while since I last added to my journal. For that I apologize, and tell you
that I have no excuse. It's now the eleventh month in recovery. I
just got an email from a wife/caregiver whose husband is having a difficult time
after his stroke in February. She asked me if I would email him and
provide some encouragement. I sat for several hours and typed out a
message to them both. I don't know if it will help. I hope it will.
I emailed my co-author today, and told him about this email. What she
shared describes what so many stroke victims and their spouses deal with,
day-to-day, and month-to-month. I can't go into detail as that would
violate their privacy, but it is very difficult for them on many levels.
It's the very reason Jim and I continue writing our book, Stroke with Mirrors.
Of the 15 chapters, we have 11 completed and first edited. We can only
hope to get it published and then make it available to everyone.
Since I last wrote, we were able to
acquire a used electric hospital bed for $350. When I got home last year I
tried sleeping in our bed, but couldn't turn over or lie flat, so I slept in a
lift chair recliner. It was ok for a few months. I tried the bed a
couple more times, but it didn't work for me. We've had the hospital bed
for about a month and its been wonderful. Its fully electric, has side
rails and is very comfortable. Most nights I sleep for 6-8 hours. If
you or someone you know is having a similar recovery experience, try to find you
a good used hospital bed. I first asked neighbors and friends. Then
I called local service clubs, Hospice and other agencies. A friend found a
Federal auction site for us, and at the time, had 3 hi-end beds up for auction.
The only problem, was that I would have to buy all 3 beds and it indicated that
the motors did not work. Just because I wasn't successful locally, I would
still suggest you start there, anyway. You might get lucky. I then
went to the Internet and started searching myself. I hit pay dirt on
www.craigslist.com for our area. I
found 2 used electric beds from different folks. We contacted them, made a
deal, and got our bed. I'm so grateful. I would advise caution when
buying something like this. Look at the bed, test it out, and be sure its
what you need. If you are fortunate to have Medicare you may be able to
get a bed that way. They won't pay for a bed, but will cover the rent for
a bed x13 months, with you being responsible for the 20% co-pay per month.
After 13 months, the bed becomes yours. I don't know about private
insurance, as policies vary, but I would check in to that option if you have
insurance. Good hunting.
How's my progress? I'd like to
report dramatic improvements, but I can't. Not much has changed over the
past couple of months. I'm certainly not where I expected to be when all
this started. All I can do is keep at it, and hope for more recovery.
I continue to try and do as much as I can do with my exercises, help around the
house, and everything else. It can be discouraging, tiring, depressing and
all the other stuff I feel but I'll keep pushing myself.
I've talked about the book before.
Now I'm finding pleasure in writing short stories. So far I've written 3
stories. All of them came to me at 3am, on different nights. The
last time I ever tried to write a short story was when I was in high school as
an English class assignment. It was horrible, and my grade for it was
deservedly low. Each of the new stories come from my own experiences.
I've been submitting them for possible publication. Like the book, I don't
know the outcome, but if nothing else, I might offer them on this website.
I'll keep you posted on their progress.
Well, all, I'm out of words at the
moment and its time that I work at making dinner for my wife and I. I'll
try to be more diligent about the journal entries. So until next time...
September 30 In 3 more days,
it will be 1 year since my stroke occurred. Its a tough anniversary since
my recovery process is not as far along as I had hoped, but it is also an
anniversary to celebrate. I'm still alive, I'm still here to be with my
wonderful wife, my family and my friends. I can talk, although not as well
as before, I can move about in my electric wheelchair, I can stand and pivot
from chair to chair, and can walk a very little bit. Its not the life I
would want for anyone, but its me now, so I will deal with it. It really
is a moment to savor.
I'd like to tell you about something new I
learned just this morning. While doing some more research for my book, I
again looked up a problem I've suffered since the second day of the stroke.
It's called Emotional Lability. Symptoms are uncontrollable crying and
laughing. It can occur at any time and I suffer from both. What I
learned today was that besides stroke victims it also can affect people with
Parkinson's disease, Multiple Schlerosis (MS), ALS, and other devastating
neurological diseases. One other side effect is excessive yawning with
involuntary muscle tightening of the stroke-effected arm and leg. I've had
this as well, since the beginning and no one could explain it to me. Is it
treatable? According to my research, low dose antidepressants can be used,
and in 2005 they began testing other medicines to treat these symptoms.
I'm reluctant to try the low dose anti depressants as I'm on so many other
medications, and choose to wait until I have more info on the new treatment
therapies. I'll list the 2 websites I found that discuss, so that you may
become more informed, but remember to discuss this with your doctor -
PatientsLikeMe : Emotional Lability Symptom Report
Dextromethorphan-Quinidine Combination Reduces Inappropriate Emotional...
Finally, for this posting, I want to tell
you about my battle with Medicare. Although for all my other business with
Medicare during this recovery, I've been very pleased, this is one instance I've
been most displeased. While still in the Rehab Hospital, some few days
from discharge, my doctors and I discussed the need for an electric wheelchair.
I could not use my right arm, had a lower leg prosthesis on one leg, and could
not use the other leg, so from a manual wheelchair I could only sit in one spot
and spin in circles. When I went home and used a manual wheelchair, my
world would be like a prison with 1 chair in one small room. All the rehab
I'd had, all the efforts I'd made, etc. would be lost. The hospital could
not order a chair for me, so my wife and I did so. We purchased the
electric wheelchair from on online source for wheelchairs. The wheelchair
came 1 day before my discharge and it was a blessing and has been ever since.
We filed for Medicare 2 months later, after things settled. They denied it
immediately with the ONLY reason given was that "I was an "Inpatient" when
we ordered the chair" and they do not cover inpatients for equipment. They
don't care about any other extenuating circumstances, as I described above.
They cited a regulation that is in the DME supplier manual. Is this sour
grapes on my part? Absolutely NOT. If we had waited until we got
home, It would have taken Medicare 3 weeks to 3 months to make a determination,
before the chair could be ordered. For 4 months I'd have been in that
"prison" I described before. My previous efforts at recovery would have
been lost, and very severe depression most likely would have resulted. We
did not order the chair through the online DME supplier and bill Medicare at the
time, but bought the chair outright from our own funds. We had NO access
to the supposed DME supplier manual from which they quoted, and there is NOTHING
in the benefits booklet that Medicare recipients get annually, to tell you of
this rule for approval. Yesterday, I got the latest denial on my appeal
for Medicare reimbursement. They still have not read my explanations, as
they insist I purchased the chair through the online supplier, and that THEY
billed Medicare, not me. I write all this, not only to complain, but to
caution anyone in a similar situation. Don't expect Medicare to be
understanding or flexible in any way, when it comes to their rules. Their
appeal process? It's just going through the motions, a total joke.
They care less about the patient than they do about their rules. My chair
cost me $2000.00, money I did not have. On a fixed income, It will be
years before I can pay it off. Buying carefully online, it cost me about
half of what it would have cost otherwise. Was it worth it? Yes, and
I'd do it again. As I sit here in my electric wheelchair, very happily
able to move about my house, I watch in disgust, the TV ads for $3500 - 6000.00
scooters and wheelchairs so readily available and paid for by Medicare.
When this chair breaks down, I'll be sure to contact them first for my next
wheelchair. As you can tell, this really teed me off. OK, now its
time to cool down....less stress....less stress...my mantra....
I do have really good news about our book.
I may have found a literary agent to take one the project. Being somewhat
ignorant about the publishing end of things, I recently learned that 95% of the
publishing houses only accept manuscripts via a literary agent, and not from
authors. I'm in the process of writing a formal proposal to the agent and
hope that the outcome is a positive one. It is a first step and hopefully
a good one.
October 17 - Well, gang, I
did it again. I fell this week while on a "necessary" visit. I fell
between the wall and the john. I "always" carry the cordless phone with me
in case of emergencies such as this. I forgot this one time to do just
that. I was not seriously injured, but did have several big bruises and
some muscle strains. I managed to get myself out to the hallway after
about an hour of work, where it was more comfortable. Then, I was able to
attract the attention of a very kind neighbor who came in and got me the
cordless phone, so that I may get some assistance by my dear wife.
Needless to say, I was on the floor for over 3 hours. I now have the
cordless phone on a ribbon around my neck. it was a frightening and
helpless feeling, it was also a stupid thing to do. I strongly suggest
that anyone in a similar state, seriously consider their options, before
something like this happens.
More to
Come
Evan Clements
the sloppy one-handed typist
I welcome your comments and experiences,
please e-mail
me at
evanclements@verizon.net and please indicate if you
wish to share with
others. Thank you for reading my journal.
Stop back as I plan to add to
it, as time moves forward.
My Personal
Journey