COPD and Other Stuff This is a patient-to-patient blog to exchange information and resources…from COPD to Arthritis to Cellulites to Sarcoidosis to Sleep Apnea to RLS to Psoriasis to Support Groups to Caregivers and all points in between.
I’m telling my recent Northwoods story backwards, my outpatient,
twice-weekly rehab ends at the Northwoods picturesque,
characteristic salt-water rehab pool and into a new
beginning.
Other than my first solo horse-packing trip into the Cascades and
living through a host of learning experiences, I have seldom
learned so much in one week as during my stay at Northwoods, a five
star rehab center just north of Silverdale.
I hope to progress as I should, working out at home and/or in a
commercial pool. The
primary goal here is to rebuild the muscling around my arthritic
bone on bone left hip in order to pedal a recumbent
trike.
One of Northwoods rehab specialist, Jeff, actually got me RUNNING
in the chest high water, coming down on my left foot without the
old debilitating pain…muscle building safely in the
water.
Incidentally, the second time I ran in the water I felt so Tarzana
that when Jeff asked me to sit on the water stool for a series of
other exercises; I made a surprising running leap for it… and
slammed into it or would have if I’d got that far.
I began the jump too far out and the side effect was a gut
wrenching, breathtaking laugh – so hard I ran out of air and had to
focus hard to stop laughing. COPD is not for sissies – nor
are fancied, imagined, graceful gazelle leaps of joy that I could
put weight on that left hip.
Good Physical Therapists cause little moments of joy for the
patients they guide into better fitness as we work into better
health.
Northwoods has many good or great physical therapists – I am
talking a little about some of the people and my latest experience
as a patient in one of two Kitsap County five-star rehab
centers.
For information, I didn’t qualify for insurance coverage since I
had only been at Harrison overnight for observation, yet encouraged
by Harrison’s sharp good-by, good luck doctor,Dr.
Mathew Coates the next day, I decided to give it a couple
days…and stayed over a week.
This is the entrance to the Red Barn dining room leading to access
to the salty rehab pool.
Antiques – some early Kitsap County settler and his family plowed
ground with this nifty tool and a couple good horses – or, maybe it
is a thresher – a hay cutter.
Note the wonderful old artifacts displayed everywhere in the “red
barn “ – take a gander at the two-woman saw on the wall
above the staircase.
Open for dining
These wonderful items are displayed on the way to the ladies
changing room and the pool.
On my way out, dinner guests coming in…hubby waiting for me to go
home Gorgeous
quilts on the upper, left wall
Door to the pool
Roomy shower – kept spotless
The first dressing room/ladies room leading to
a pool that I have seen decorated with real hand-worked framed
quilt squares on the wall.
Kristi, left, following Jeff’s exercise plan had me run as fast as
I could to the end of the pool – stop and walk backwards to the
other end and repeat the run…got me laughing when I spotted her
‘running’ alongside.
She moved through the water like a prancing parade horse – head
bobbing, smooth and graceful while I plowed through the water using
my arms pulling forward – feeling plow horsey running through the
deliciously warm water. Kristi asked why I was
laughing. Her first
time running through water, she said, when I told her. She has a wonderful spirit and I
howled…and did not tell her Jeff saved his energy and did not run
alongside when he instructed me to run.
Patients need the lightness of spirit and humor with the serious
work they do helping put us together again,…we’re
sort of like HumptyDumpty
and they help us get back together again and teach us how to apply
our own glue.Kristi and Shayla
Thanks Shayla, (PT) and Kristi (PTA) – What a great job you do for
us!
Lymphedema = Pain = More Pain = Avoidance = Get Educated = Get Fit
National Lymphedema Network – Educating Patients
Online
Part 3b of 3b
Exercise and Compression Garments:
Lymphedema Remedial Exercise as a part of CDT
requires compression garments or bandages.3-5 There are no studies
on the use of compression garments when performing stretching or
flexibility exercise alone.
Our visiting young cousin from
Norway rode her first recumbent trike in Silverdale and wore “What
is COPD” tee shirt while she was here.
My young cousin, Malin from Norway is included here because
COPD (Chronic
Obstructive Pulmonary Disease) began in 1997 for me and led into my
long ride into medical conditions – one after the other and my
gathering weight attracted lymphedema as surely as fresh bread and
butter sticks to peanut butter and strawberry
jam.
“The NLN Medical Advisory
Committee (MAC) recommends using the guidelines for aerobic and
resistance exercise to guide use of compression during flexibility
exercise since flexibility exercises may be combined with other
forms of exercise.
The amount and type of compression for exercise should be decided
with input from a professional knowledgeable about lymphedema.
There is no strong evidence basis for the use of compression
garments during exercise; however, most experts in the field of
lymphedema advise the use of compression during vigorous exercise
for people with a confirmed diagnosis of lymphedema.
Melissa showing me the latest
fast, protective lower leg support
Melissa Mercogliano,
Center for Orthopedic &
Lymphatic Physical Therapy in Port Orchard,
WA.
recently showed me a new and easy way to add support stockings…easy
except for we Tub’ettes.
“One study suggested that individuals with lymphedema who do
resistance exercise without compression may increase
swelling.
20 Resistance exercise may reduce limb volume when used as an
adjunct to compression therapy in people with confirmed
lymphedema.
8 One study showed that aerobic and weight-lifting exercise was
safely performed without compression in women at risk for breast
cancer-related lymphedema.
9 That study showed patients who developed lymphedema could
continue to exercise with compression garments. Compression
garments should be measured by an individual trained and
experienced in fitting compression garments for lymphedema and
should be at least Class I compression for upper extremity. Higher
classes may be required for more severe lymphedema and for lower
extremity lymphedema.
Custom sized, each leg. This
pair is old…notice the crinkles below the rubber dotted band. The
replacement compression stockings are black.
This pair is about one year old.
I throw the stockings in a little zippered mesh cloth bag and into
the washer on a short cycle, regular soap, extra rinse – cold water
and smooth out and let them hang to dry.
I prefer the toe less stocking so my toes don’t get scrunched up
and have two different kinds. The little rubbery tips around the
tops of both help them from sliding on down my leg and cutting off
circulation. Ask your
doctor.
“A hand piece (gauntlet or glove) is recommended when exercising
with a sleeve to avoid causing or exacerbating hand
swelling.
Definition of Individuals At Risk for
Lymphedema:
Individuals at risk for lymphedema have not displayed signs and
symptoms of lymphedema but may have sustained damage to their
lymphatic systems through surgical lymph node removal or radiation
therapy.
Additionally, individuals at risk may have surgical incisions in
the vicinity of lymph transport vessels.
Individuals who have family members with hereditary lymphedema may
also be at risk.
An individual’s risk of lymphedema may change over time depending
on factors such as weight gain, age, and changes in medical
condition.
It is the position of the NLN that:•
Exercise
is a part of a healthy lifestyle and is essential for effective
lymphedema management•
Before starting any exercise program, individuals should be cleared
for the program of activity by their physician.•
Lymphedema Exercises
(also known as Remedial
Exercises) are specific rhythmic muscle and breathing exercises
used as a part of lymphedema treatment in Phase I and Phase
II
Complete Decongestive
Therapy (see the NLN Position Paper on Diagnosis and
Treatment).
http://www.lymphnet.org/pdfDocs/nlntreatment.pdf
In Phase II lymphedema
maintenance, these exercises can be combined with or integrated
into a regular exercise program.•
After intensive treatment with CDT, the person with lymphedema
should work with the certified lymphedema therapist or qualified
lymphedema specialist provider (MD, NP) to adapt their remedial
exercises into their fitness and weight management program at the
time they are moving from Phase I (treatment phase) to Phase II
(self-management).•
Individuals with or at risk for lymphedema can and should perform
aerobic and resistance exercise in a safe
manner.•
The individual with or at risk for lymphedema may benefit from
working with an Exercise
Physiologist and/or Personal Trainer. The person
with lymphedema should inquire if the trainer or exercise
physiologist has experience working with lymphedema and other
medical conditions. Certification for personal trainers varies.
Patients who are unsure of about the qualifications of a community
exercise practitioner should work with a certified lymphedema
therapist or health care provider to assist them in finding a
community exercise program or professional.•
In general, individuals with a confirmed diagnosis of lymphedema
should utilize compression garments or compression bandages during
exercise.•
Individuals at risk for lymphedema may or may not utilize
compression garments during exercise; this is an individual
decision to be made with guidance from a care provider and/or
therapist based on risk, activity, and conditioning
level.•
Individuals at risk for lymphedema will benefit from most forms of
exercise tailored to their individual needs.
•
Individuals at risk for or with a confirmed diagnosis of lymphedema
should avoid repetitive overuse of the affected part.
Sudden increase in an individual’s usual exercise duration or
intensity may trigger or worsen lymphedema. It is likely that a
program of slowly progressive exercise for the affected body part
will decrease the potential for common daily activities to result
in overuse.•
Exercise should be started gradually, increased cautiously, and
stopped for pain, increased swelling, or
discomfort.•
The risks of exercise for the individual with or at risk for
lymphedema must be balanced against the risks of deconditioning
that undoubtedly results from not exercising. A deconditioned body
part with or at risk for lymphedema can do progressively less
without risk of overuse. As a result, exercise is recommended for
those with and at risk for lymphedema.
•
The NLN cannot specifically determine the safety
of exercise for any individual. The guidelines in this Position
Paper provide general principles, but do not substitute for medical
evaluation and recommendations from a health care professional. It
is the responsibility of all individuals with or at risk for
lymphedema to consult with their health care provider regarding
their own specific needs.
References:
1. Tidhar D, Katz-Leurer M. Aqua lymphatic therapy in women who
suffer from breast cancer treatment related lymphedema: a
randomized controlled study. Support Care Cancer.
2010;18(3):383-392.
2.Moseley
AL, Piller NB, Carati CJ. The effect of gentle arm exercise and
deep breathing on secondary arm lymphedema.Lymphol.
2005;38(3):136-145.
3.Boris
M, Weindorf S, Lasinski B, Boris G. Lymphedema reduction by
noninvasive complex lymphedema therapy.
Oncol (Williston Park). 1994;8(9):95-106; discussion
109-110.
4.Földi
E, Földi M, Weissleder H. Conservative treatment of lymphoedema of
the limbs.
Angiol. 1985;36(3):171-180.
5.Földi
M, Földi E, eds-in-chief. Foldi’s Textbook of Lymphology for
Physicians and Lymphedema Therapists,
2nd ed. Munchen, Germany:Urban & Fischer; 2006.
6.Bergmann
A, Mendes VV, de Almeida Dias R, do Amaral E Silva B, da Costa
Leite Ferreira MG, Fabro EA.
Incidence and risk factors for axillary web syndrome after breast
cancer surgery [published online ahead of print October 17,
2011].
Breast Cancer Res Treat. doi:10.1007/s10549-011-1805-7.
7.Fourie
W, Rob KA. Physiotherapy management of axillary web syndrome
following breast cancer treatment: discussing the use of soft
tissue techniques.
Physiotherapy. 2009;95(4):314-320.
NLN • 116 New Montgomery Street, Suite 235 • San Francisco, CA
94105
Several years ago, I called Harrison Medical Center and
asked if non-cancer patients with lymphedema could attend their
support group meetings. At that time, it was limited to
cancer patients.
Yesterday I called
the following number to be certain it was still up to date.
It is and the closest Lymphedema Support Group I know
about.
If anyone knows of
more, let me know – I can post it here.
Kitsap County Closest Support Group
Northwest Lymphedema Center
Kent, WA (24.11 miles *
Meeting times: Date varies Phone:
(206) 575-7775
Tub’etts!
I’d like to be part of a support group of fatties who NEED to lose
weight for their health’s sake – with or without current medical
issues. No dues – a scale and occasionally health professionals
willing to talk to us – to educate us – to motivate us – guest
speakers.
I have been told that I’m not a good candidate for bariatric
surgery…so, before I push that particular button – is there anyone
beside me, who wants to be part of an obese/tubby support group to
work together for weight loss and good health?
To lose weight through good nutrition and exercise is my
goal.
We are dying of too much fat, fellow Tubby Ones.
Will you join me in our battle to shed the fat and live healthy?
Let me know…
AWAKE TONIGHT! Ever wonder
about an increasing sleepiness yourself or life partner?
Well, sleepiness may well mean more than boredom at home – it may
mean SLEEP APNEA – a potentially deadly medical
condition and fixable.
Thursday, September 15 – 7:00pm – 9:00pm
PROGRAM: C- Pap or Bi-Pap Maintenance and Your
Health.
SPEAKER: Kate Whettam,
Resmed
Questions welcome
AWAKE is for people living with sleep disorders and their
families and meets the third Thursday of every three months (March,
June, September and December).
“Our Better Breathers support group encompasses community
members and their caregivers who live with chronic respiratory
disease and lung disease. Better Breathers is designed to provide
support, education, networking, and tools to improve the daily
lives of those living with these health conditions.
We welcome any community member with asthma, emphysema, chronic
bronchitis, sarcoidosis, asbestosis, pulmonary hypertension,
pulmonary fibrosis and the many more lung diseases affecting our
population, pediatric or adult.
Please email or call if you will need assistance with
parking at the meeting.”
My sleep apnea story in short form: Some ten years ago the
Sleep Study and bi-pap machine enabled me to get back into a bed
after a few years of sleeping in a chair…I could not breathe lying
down so had to sleep in a recliner chair…comfortable though it was,
it was not a bed.
During this last year after an at home study I discovered my
saturation numbers hit the basement while sleeping – bottoming out
into the low 70’s. 100 is normal and nobody knew it…who knows
how long that went on?
One of the questions I will be asking tomorrow: Why don’t
the c-pap or bi-pap machines monitor the patient’s blood/oxygen
level during sleep to alert the doctor there is a problem.
Hint: After a length of time without oxygen, brain cells die.
http://www.nlm.nih.gov/medlineplus/ency/article/001435.htm
During sleep how low can the blood/oxygen levels go and for how
long before brain cells die? Personally, I want to hug and
cherish my brain cells from a distance and keep them going as long
as possible.
A sharp Harrison Medical Center ER doc caught a problem and had
me put on a concentrator that gathers oxygen from the room and
bleeds it into my bi-pap – leading to better sleep. Except
when the RLS bounces me right out of bed to move my legs and walk
around.
Ignoring Sleep Apnea can lead to serious stuff – we need to be
aware.
Tomorrow is the opportunity to ask the questions and have fun at
the same time.
Refreshments!
See you Wednesday! If anyone needs a ride, let me
know.
Following are photos of my concentrator connected to the bi-pap
and connected to the facemask that goes over my nose and blows air
into my airway.
Some folks say the c-pap and bi-pap is too noisy. I call
it the sweet song of life.
Regular rehab is fabulous. But? It doesn’t go far
enough – long enough – it hurts and it isn’t challenging
enough.
Years ago, before beginning a concentrated physical exercise
routine I asked my pulmo how high I should allow my heart rate to
go and he sincerely and thoughtfully said I probably shouldn’t let
it get over 100 at the beginning. I laughed and told him it
shoots to 100 just getting up from a chair! I’ve not
asked anyone since.
I’ve had a few really outstanding rehab technicians and I’ve
learned from them. They have to follow rules though and I
don’t. I’m a patient and I’m through coddling myself
when I feel sick because I have a goal and it has to happen this
year.
Except for one day when I was in Harrison and couldn’t make my
swim session…we haven’t missed one swim session since we began 1
February 2011. No matter what, my legs can ooze, my lungs
labor and wheeze or burn with a fever – nothing stands in the way
of a swim session.
Marilyn Grindrod is my swim coach and a miracle worker.
The only thing she said when we met and she asked if my
doctor approved of what we planned to do and I told her I believed
they did but I would not ever ask my doctors to give me a written
note guaranteeing my fitness to exercise. They
couldn’t. Nobody could. Marilyn nodded and said, “get
in the water, let’s get started.”
She doesn’t say I can’t do something. She leads the way and I
follow as best I can. Gradually I’m improving to a physical
fitness I haven’t had in years and is proving out what Anna Marx,
PT, DPT at Kitsap Physical Therapy in Silverdale proved to
me: the right machine/exercise WILL help my left hip get
better and manageable.
Marilyn also, by changing my work-outs and her focus on
breathing, must be getting oxygen to areas that have suffered
without the oxygen they’ve needed…such as the Lymphedema in my
lower legs.
Melissa will be surprised when I have to go in to be measured
for another set of support stockings. Lower leg muscle will
meet her measuring tape, not the flab of yesterday.
My legs (left leg mostly) occasionally still need and get the
Old Guy’s expert spiral and padded wrapping when the skin
gets too painful and I know if we don’t catch it, the skin
will crack and lymphatic fluid will again ooze
out. This is the longest stretch I’ve not needed to see
a doc or Melissa at NW Orthopedic and Lymphoma rehab in Port
Orchard for another outbreak! Melissa’s patient education
works.
My ideal week is four, one hour or longer sessions in the warm
pool water. The work-outs are nonstop, smooth and I can feel
my locked body become more flexible, more agile and I’m beginning
to feel muscle again.
A couple weeks ago working out close to the diving board I
impulsively reached up and grabbed the end of the board and began
doing ‘chin ups’- shooting myself up out of the water and
above the board to my chest, lowered myself and repeated 15
times. That was a lot of weight I pulled up – the point is I
did it easily – the first twelve anyway.
So, you can’t live a life in the water can you? No.
What I can now do on land is lift my left leg about a foot and flex
my left ankle. They’ve been – sort of – frozen. When
something hurts we have a tendency to back off and it becomes a
spiral into a body that doesn’t work and eventually gets dumped
into a wheelchair.
My patient opinion is that physical rehab works best, is most
effective in the water. The warm pool water resistance gets
us further faster with less pain.
I believe in miracles.
In a Pulmonary Function Test two
months ago, 16 February 2011 my FEV 1 (Gold Standard for COPD) sats
had dropped across the board: 35% – 31% – 29%.
Last week 6 April 2011 across the board they
were:
56% – 50% – 48%
Christopher Goss, MD at the University of Washington
Medical Center was amazed and doesn’t need to see me again for five
or six months.
What made the difference? The longer non-burst of
Predisone he extended? A miracle? Prayers? Serious
water work-out by a professional swim coach?
My sister lives in a small town in Kentucky and goes to a
Revival church. She and her companion each stood up and asked
the minister and congregation to “pray for Karen’s sister, Sharon
in Washington” and Karen says they do!
The following article is what prompted this post
today: If Great Brittan can do it – we can too!
“Exercise pilot is successful for rheumatoid arthritis
People with rheumatoid arthritis (RA) in Portsmouth reaped the
benefits from an exercise pilot, which was the first of its kind in
the UK.
Volunteers took part in a 10-week programme to get exercising in
the local area. They had tried various activities, including yoga,
tai chi, walking and circuit-based exercises.
‘Appropriate, regular exercise is very important for people with
rheumatoid arthritis, even when they are experiencing a flare of
their symptoms,’ said Colin Beevor, matron and service manager of
musculoskeletal outpatient department services at Queen Alexandra
Hospital, where the pilot was launched. ‘Being more active helps to
control joint swelling and ultimately can reduce the pain,
stiffness and fatigue a patient may experience.’
Rather than hospital-based exercise, local facilities were used
to encourage participants to become accustomed to working out in a
familiar environment. By learning the basics of a variety of
activities, participants were also able to discover which forms of
exercise they enjoyed the most, with a view to continuing with the
exercise after the pilot ended.
Around 700,000 people in the UK have RA, and while many
recognise the importance and benefit of exercise for their
condition, obstacles such as the prohibitive cost of classes or
feeling stigmatised or embarrassed in group classes can stop people
with RA regularly exercising.
Local firms such as private gyms and sports centres are now
being encouraged to offer discounts to people with RA to enable the
participants of the pilot to continue their exercise
programme….”
Learning Respiratory Emergency Care —including
folks dependent on the c-pap, bi-pap, concentrators and their
caregivers—yes!
Right here in Silverdale, thanks to Harrison Medical Center,
learn how best to take care of ourselves during an emergency on
Wednesday, 19 January 2011.
My husband and I have already learned how ill-prepared we were
when every safeguard we had failed, one after the other.
Heat pumps, propane insert stove and generator.
If anyone needs a ride to the seminar in Silverdale, let me
know.
Patients, caregivers and those who help us help
ourselves—working together for a common goal!
Emergency Preparedness
It’s time for us to get prepared! We’ve had a rough winter
already and there may be more to come.
Let’s make a New Years commitment to ourselves and to our
health; to be as prepared as possible to take care of our needs
during extreme weather conditions or other local emergencies.
Come and meet with us for our first 2011 meeting and share you
own personal experiences and ideas as well.
Speaker: Laura JullEmergency
Preparedness Manager
Harrison Medical Center
Topics: One Month Preparedness Calendar
Medication, Oxygen, Extended Power Outages & Additional
Tips.
***
Speaker: Pamela O’Flynn, Respiratory Therapy
Department Director
Harrison Medical Center
Director O’Flynn has first hand experience with the importance
of
emergency response and services.
Date: 01-19-2011 Time: 1:00PM Location: Harrison Medical Center – Silverdale
Campus – Rose Room
