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Posts Tagged ‘exercise’

Patient Safety, Rosemaling, Spinal Disk – Yes, Related Here

Sunday, March 31st, 2013

Tsaristic stuff happens, “we don’t live in a perfect world” a young nurse recently told me when I questioned the hospital discharge papers.  Used to transparency and kind consideration – I had expected better – much better.

The following was copied verbatim with permission of Thor Dahl.  The place is Florida – not here – but we need to be aware that Mr. Dahl and his wife are credible established people and business folks running the largest international online rosemaling “club’ offered….and where I read the following shocking post.  It was a reminder – patient, friends and family –  be aware – stuff happens.

28 March 2013 – The Global Rosemaling Club:

“Yesterday we went to  my surgeon for the third visit since my surgery last December 20th. I also had my first “commercial” haircut in over a year. But Joan has been nice trimming it several times. She used to do a great job! I also drove the car for the first time. Joan drove home. But I was happy to feel that I could handle the car after more than a year as a passenger.

 

The doctor didn’t give us the kind of news that I had hoped for. Each time I go there, they take a few x-rays to see how I’m healing. He said that due to the first hospital I went to let me out without knowing that I had 2 breaks in my back, the 6 extra months it took to find this out before the final surgery in a much better hospital, was too long to straighten out my old spine. So I’ll be living with an ugly hump and pain for the rest of my life. As well as not being able to lift more than 25 pounds while being very carefully without bending too much. If I was too ruff with my back, it just could brake again. He was very liberal on giving me prescriptions for pain medicine and indicated that I should not be afraid of taking them. From next Monday, I’ll start going to their “in house” physical treatment department. It will be from 2 to 3 times a week depending on what they think will be best for me. The doctor assured me that I could get anything I asked him for. I guess he felt sorry for the way this turned out for me.

 

He clearly admitted it was due to the poor treatment from my first hospital and added that this was not the first time they had failed with their surgery or diagnoses at that hospital. So he will hopefully be a good witness, because being ruined for the few years I have left, somebody should pay for not giving me the proper treatment. This will include the arthritis dr. that gave me the wrong medicine, which gave me internal bleeding and fainting. 

 

Even with all the above negative “news”, I feel a lot better despite it’s going to be hard to get used to having an ugly hump on my back!

 

However, I feel so badly for Joan who will be stuck with my part of many of my home duties which are way too heavy for her as well, because of all the arthritis problems she has of her own. At times she can hardly move. She often doesn’t sleep many hours in her bed and have to move between the sofa and her bed. Her hands are also swollen when she gets up in the morning.

Well, it’s “nice” to get old!”

(Thor Dahl)

http://www.rosemal.com/

the-global-rosemaling-club@yahoogroups.com

Joan & Thor

Dahl House Art & Rosemaling Center

16623 West River Rd., Caribee Shores

Inglis, Florida 34449   Ph:352-447-4178

 

Based in Seattle, Consumer’s Union, “Washington Advocates for Patient Safety” (WAPS) is a Washington group advocating for patient safety. http://www.washingtonadvocatesforpatientsafety.org/patient-safety/

The fact is almost sixty years ago the epidermal needle intended to help me give birth was jammed into a spine disk.  No physician treated me – they could not find anything wrong. 

Eventually, desperately, my parents took me to a recommended chiropractor and  I was given a pamphlet showing exercises.  He circled the ones he wanted me to do. 

He gave me hope and followed his instructions exactly.  He did not examine me, nor accept payment from my parents.

He gave me a life back – I worked through the pain. 

Through the years – every decade or so – I have followed the disintegration of the disk accidentally through x-rays given for other reasons.  A recent – on purpose x-ray showed the disk is gone. 

I lived through it without treatment and lived the physically active lifestyle I knew and loved.  COPD threw a different kind of curve in 1997.

Mistakes happen. 

Mistakes are sometimes turned around with the proper care and attention.  

Exercise gave me a life, and taught me to work through the pain.   

1-IMG_2483See your doctor.  Take a friend to be sure you both heard the same thing and be proactive in your own care. 

God Bless.  Happy Easter!

Thanks for listening… Sharon O’Hara


Lymphedema = Pain = More Pain = Avoidance = Get Educated = Get Fit

Tuesday, March 12th, 2013

 

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.

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 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.

 1-IMG_29033-IMG_29074-IMG_2909

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.

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

Tel: 415-908-3681 • Fax: 415-908-3813

Infoline: 1-800-541-3259 • Email: nln@lymphnet.org •

Online: www.lymphnet.org 

Xxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxx 

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…

 

Thanks for reading… Sharon O’Hara familien1@comcast.net

Kitsap County Library System has educational Lymphedema books for the layperson – just ask.


Mark Mangus Tells the COPDer How to Live – EXERCISE

Sunday, July 10th, 2011

Pulmonologists and COPDers – take note – patients really do WANT to be educated and too many physicians are shy about encouraging patients to exercise and WHY WE MUST EXERCISE to have a life.

Following is the noted exercise guru for the COPDer, Mark W. Mangus, Sr., BSRC, RRT, RPFT, FAARC of San Antonio, TX answer to a patients question about her FEV-1 and FVC decline.  Mark’s answer was posted on my online support group, EFFORTS.  www.emphysema.net.

A gentle reminder that Mark had to move beyond traditional COPD treatment because his daughter, Kim, born with Cystic Fibrosis was not helped by traditional medicine methods for lung patients.  Kim’s only hope was to stay alive until she was old enough for a lung transplant.  She has had double lung transplants now and currently works for Vanderbilt Medical Center.

Hi _ _ _,

First, let me say that there is nothing you can do to stop the decline you

are experiencing in your FVC and FEV-1, though you CAN slow the inevitable

progression to some (unknown) degree by exercising increasingly VIGOROUSLY

as you embark on your pulmonary rehabilitation effort.

**********

Your stress testing and echo tell a story of long developing pulmonary

hypertension which has advanced with poor intervention with regard to timely

detection of hypoxemia and earlier oxygen therapy support.  Your breast

cancer bout and treatment are potentially responsible for part of what you

are currently experiencing.  Radiation treatment is notorious for triggering

a process of radiation fibrosis, though it usually happens more profoundly

in treatment of lung cancer than more superficial cancers like breast

cancer.  But, if lymph nodes under your arm were irradiated – in other words

- the radiation was applied broadly over an area larger than simply the

breast tissue, chances are that you are seeing some effect from that.  A

high-resolution CT of your lungs, maybe with enhancement, if deemed helpful,

might better illuminate the presence of fibrosis and its extent and progression.

 

Your FVC has dropped disproportionately with your FEV-1, the FVC dropping by

almost double that of the FEV-1 during the same period.  This is also

suggestive of the possibility of fibrosis.  As well, your DLCO being reduced

to around 30 % of what it should be AND the confirmed and significant

hypoxia discovered with your walking and sleeping oximetry tests correlate

with the reduced DLCO and FVC.  The reduction in FVC is yet further

suggestion of a restrictive process being combined with your obstructive

lung disease process.

**********************************

I am disappointed that your 6 minute walk was conducted as it was, but,

unfortunately, not surprised, as it is one of the most variably conducted

tests done in this area of medicine.  You SHOULD have been allowed to

continue – hypoxia detected or not – as long as you were able to AND at a

pace that YOU chose.  If monitoring was to be done, then it should have done

no more than to document the extent of changes – NOT signal a point at which

the clinician decided to stop you and THEN to totally alter the validity of

your test by setting your pace!  So, the 620 feet you walked is meaningless

to determine anything with regard to the clinical state of your disease

and the limitations it imposes upon your ability to ambulate or to

extrapolate any determination of functional adequacy.  None of that is your

fault.  It is due to the poor understanding of the test purpose and method

on the part of the clinicians.

**************************

Your sleep saturations are very telling of significant hypoxemia that is

more likely associated with your fibrosis and pulmonary hypertension.

Pulmonary hypertension aggravates hypoxia, making it worse, which in turn

makes the hypertension worse, which in turn, makes the hypoxia worse . .

You can see where that is going. That is why you bottom out so low at 78 %

during sleep.

*************************************

First, I hope that 2 liters during sleep is keeping you saturated to at

least 88 % as a bottom low point.  If you have not had a follow-up sleep

study to determine the effect/benefit of the oxygen during sleep, you should

push for it to be done.   You should ALSO be using oxygen for ALL ambulation

and exertion – and possibly more like 4 to 6 liters – as I’m doubtful that

any less will saturate you adequately to counteract your pulmonary

hypertension.   Treatment of the pulmonary hypertension should be a point of

primary focus for you and your medical team.  Oxygen, at this point is the

most powerful and effective treatment you can use to slow the inevitable

progression towards profound heart failure you can expect if the pulmonary

hypertension is not controlled a LOT better than it has been over the recent

past.  That wll likely ‘do you in’ a whole lot sooner and with much interim

misery than the combined lung disease process that has caused it.

********

It is good that you are starting a pulmonary rehab program.  I am surprised

that they don’t have a pulmonologist directing the program.  Do you know

what kind of doctor is acting/serving as their medical director?  Make the

most of it.  Push hard to learn to work against the difficulties of the

breathing symptoms that accompany your disease, especially at this point.

Don’t let the staff hold you back because of hypoxia.  Push them to give you

all the oxygen you need to be able to push yourself to the maximum.  Short of

such an effort and you will be mostly spinning your wheels.  Working hard to

breathe and overcoming the difficulties and fear it can impose upon you are

not easy.  NEVERTHELESS, working hard to breathe – even when it makes others

uncomfortable to watch you work so hard – will NOT harm you, despite what

many might opine.  It may ‘feel’ like it’s gonna kill you.  HOWEVER, it will

NOT!  It is not an easy path you must travel.  But, others have traveled the

same path.  The good news is that you still have 29 % FEV-1.  That might

creep back up to 35% with hard work.  AND, it would be worth it because that

little 5 % raw change represents a 20 % change in your overall FEV-1.

*******

If you have further questions as you go along, I am happy to try to answer

them for you.       Best Wishes,                                  Mark

 

Mark W. Mangus, Sr., BSRC, RRT, RPFT, FAARC

San Antonio, TX

************************

COPDers, a new study indicating what I have shouted about for years – recumbent cycling (trike)…

“…This study showed that an eccentric cycling protocol based on progressive increases in workload is feasible in severe COPD, with no side effects and high compliance…”

COPD. 2011 Jul 5. [Epub ahead of print]

Eccentric Cycle Exercise in Severe COPD: Feasibility of Application.

Rocha Vieira DS, Baril J, Richard R, Perrault H, Bourbeau J, Taivassalo T.

Source

Respiratory Epidemiology and Clinical Research Unit (RECRU), Montreal Chest Institute, McGill University Health Centre, Montreal, Quebec, Canada,1.

Abstract

Eccentric cycling may present an interesting alternative to traditional exercise rehabilitation for patients with advanced COPD, because of the low ventilatory cost associated with lengthening muscle actions. However, due to muscle damage and soreness typically associated with eccentric exercise, there has been reluctance in using this modality in clinical populations. This study assessed the feasibility of applying an eccentric cycling protocol, based on progressive muscle overload, in six severe COPD patients with the aim of minimizing side effects and maximizing compliance. Over 5 weeks, eccentric cycling power was progressively increased in all patients from a minimal 10-Watt workload to a target intensity of 60% peak oxygen consumption (attained in a concentric modality). By 5 weeks, patients were able to cycle on average at a 7-fold higher power output relative to baseline, with heart rate being maintained at ∼85% of peak. All patients complied with the protocol and presented tolerable dyspnea and leg fatigue throughout the study; muscle soreness was minimal and did not compromise increases in power; creatine kinase remained within normal range or was slightly elevated; and most patients showed a breathing reserve > 15 L.min(-1). At the target intensity, ventilation and breathing frequency during eccentric cycling were similar to concentric cycling while power was approximately five times higher (p = 0.02). This study showed that an eccentric cycling protocol based on progressive increases in workload is feasible in severe COPD, with no side effects and high compliance, thus warranting further study into its efficacy as a training intervention.”

PMID:     21728805

[PubMed - as supplied by publisher]

http://www.ncbi.nlm.nih.gov/pubmed/21728805

 

COPDers–talk to your doctors- get educated and educate them to what patients CAN DO.

Thanks for reading… Sharon O’Hara


The Action is Hot Lungs – Part 2 of 3

Monday, June 20th, 2011

The Action is Hot Lungs –Part 2 of 3

Harrison’s Better Breathers second speaker, Kinestiologist Aaron Norton, specialist in ‘Energy and Movement’ followed Leah Werner, Dietitian Harrison Medical Center in speaking to the crowd of pulmonary patients, COPDers and caregivers in the Rose Room at Harrison Silverdale last Wednesday.


 

 

 

 

 

 

 

 

 

 

 

 

 

 

Aaron works as an exercise coach at Sub base Bangor for the Navy and Marines to be “Mission Ready” and brought to us by Mei-Lin who is Harrison’s coordinator for the series of cardiopulmonary rehabs Harrison is establishing throughout Kitsap County.

Capri, a program I attended over a decade ago is now under the Harrison Medical Center umbrella for cardiopulmonary rehabilitation.  I hope the program includes a maintenance program and has – at least – one recumbent elliptical machine – great for lung patients with hip issues.  The program should include water workouts for exceptional flexibility, strengthening and aerobic.

Aaron was born with asthma and had childhood exercise induced asthma until he gradually, over a two-year period worked himself through it and over it.  Aaron’s asthma is long gone and he teaches exercise, Mission Ready’ Energy and Movement’ to Navy and Marine men and women.

NOW I understand how my young Norwegian cousin, Malin managed to get over her exercise-induced asthma – she exercised through it!

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

“SMART Principle”-         

Specific, Measurable, Attainable, Realistic, Timely

I failed to meet the SMART Principle.  My goal of beginning a self-supported recumbent trike tour for COPD – 5 June – two weeks before the 2011 American Lung Association’s Big Ride Across American began didn’t get off the ground..no left foot to the pedal rotation..

The Big Ride Cyclists left Seattle today.

I was Specific, the intense water workouts beginning 1 February showed Measurable improvement in my left hip and leg and whole body.  Attainable – Yes! (Most people do not believe I can or will make this ride) Realistic -Yes.  (The issue is that my left hip will still not do a full forward pedal stroke.   The issue is that my bone on bone left hip joint will not let my leg fully rotate – yet.   Timely – No. The fact is I cannot pedal my regular trikes.  I can get on them now, can lift my left foot on the pedal and can do a half rotation with the pedal pendulum, but cannot carry it over.  Yet.  Now I have a trike to use – the recumbent hand cycle trike -  and will work toward leaving here on it NEXT 5 June 2012 – NEXT year..a heartfelt thanks to a great recumbent trike shop in Florida for the pedal pendulum tip ..more later.

Thank you, Aaron!  It was a shock to see my personal physical goal predicament easily explained right there on the screen.

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

http://pugetsoundblogs.com/copd-and-other-stuff/2011/06/20/the-action-was-hot-lungs-part-1-of-3/

Read more: http://pugetsoundblogs.com/copd-and-other-stuff/2011/06/14/pulmonary-patients-eat-and-move-right-learn-how-tomorrow-better-breathers/#ixzz1Pg59kQFt

…Part 3 of 3 tomorrow… thanks for reading…Sharon O’Hara

Sorry for the poor photos…

Part 3 of 3 tomorrow… thanks for reading… Sharon O’Hara

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 


Kitsap County African-American and Asian-American COPDers Are Missed in Lung Patient Meetings

Thursday, June 16th, 2011

What role does ethnic ancestry (race) have to do with COPD? Yesterday’s information packed Harrison Medical Center/Better Breather’s support group meeting brought home the work ethic of the Norwegian immigrants I knew growing up and remember thinking I am glad to be born Norwegian American of immigrant parents.

That said, I thought of other races/ethnic immigrants to this country and their same work ethic and realized that I don’t recall seeing a person of obvious racial differences at any COPD meeting I’ve attended in the years I’ve had COPD. (1997)
We all share the same American pride of heritage but none of it matters with COPD or any chronic disease. Under the skin, we all look the same: brain, heart, lungs, liver and so on. Disease generally does not know race, religion, gender or age and does not stop at borders. We are sisters and brothers under the skin – our lungs are damaged, not our varied cultures and pride in them.
We have damaged lungs – permanently damaged yes, but we can get educated how to help ourselves live a quality life – all of us.
Yesterday’s Better Breather’s meeting was a ‘don’t miss!’ for lung disease patients and I would like to know why non-Caucasians were missing?

I feel lucky in my heritage, as I know everyone feels about his or her heritage and culture. We share lung disease and should be equally educated as patients. As a Norwegian/American lung patient, what can I do to get you to these incredible meetings?

Speaker Aaron spoke to how he, as an exercise induced asthmatic child got over it in two years -I’ll tell you in the story I’m writing and posting soon, but you should have been there.

Take care of yourself, get educated because Harrison is getting hot to educate patients. Hope to see you at next month’s meeting.
Following is the African-American COPD story in Chest in 2009 and the Asian-American COPD story 2011.

African-Americans with COPD Use Fewer Health Services
New research shows that African-Americans (AA) with chronic obstructive pulmonary disease (COPD) use fewer health services than Caucasians with the condition. Researchers from the University of Maryland compared health services utilization and cost outcomes in 4,723 AA patients and 4,021 Caucasians with COPD, asthma, or both. After controlling for age, gender, cohort allocation, and comorbidities, results showed that AA adults with COPD, asthma, or coexisting asthma and COPD used fewer medical services and accounted for lower medical costs than Caucasians.

The authors speculate that the differences in utilization and medical costs may provide an explanation for the racial disparities in outcomes of patients with COPD and asthma. The article is published in the August issue of CHEST, the peer-reviewed journal of the American College of Chest Physicians.
http://www.chestnet.org/accp/article/african-americans-copd-use-fewer-health-services

Ethnicity and Risk of Hospitalization for Asthma and Chronic Obstructive Pulmonary Disease.
Tran HN, Siu S, Iribarren C, Udaltsova N, Klatsky AL.
Departments of Medicine (H.N.T.) and Pulmonary Medicine (S.S.), and the Division of Research (C.I., N.U., A.L.K.), Kaiser Permanente Medical Care Program, Oakland, California.
PURPOSE:

To identify ethnic differences for risk of hospitalization for asthma and chronic obstructive pulmonary disease (COPD).
METHODS:

We undertook a cohort study with 126,019 participants: 55% whites, 27% blacks, 11% Asians, and 4% Hispanics. To estimate asthma and COPD risk, we used Cox proportional hazards models adjusted for age, sex, body mass index, education, smoking, and alcohol intake. End points were hospitalizations for asthma or COPD.
RESULTS:

Compared with whites, relative risks (RR) with 95% confidence intervals (95% CI) for asthma among other groups were: blacks, 1.7 (1.4-2.0); Hispanics, 0.9 (0.6-1.4); and Asians, 1.6 (1.2-2.1). Among Asians, increased risk was concentrated in Filipino men and women and South Asian men. For COPD, whites were at highest risk; RR of blacks was 0.9 (0.7-1.0); Hispanics, 0.6 (0.3- 0.9); and Asians, 0.4 (0.3-0.6). COPD risk among Asians was lowest in Chinese with RR of 0.3 (0.1-0.5).

CONCLUSIONS:

Ethnic disparities in risk of asthma and COPD as well as between both diseases exist, especially for Asian Americans, who have high asthma risk and low COPD risk. While residual confounding for smoking or other environmental factors could be partially responsible, genetic factors in Asians may be involved in decreased COPD risk.
Copyright © 2011 Elsevier Inc. All rights reserved.
http://www.ncbi.nlm.nih.gov/pubmed/21414801

The bottom line is anyone with lung/pulmonary disease needs to become educated so that we can live the best life possible as long as possible. Exercise makes a difference.
More later…thanks for reading… Sharon O’Hara


The National Institute on Aging and Kitsap’s Baby Boomer Resources

Wednesday, January 5th, 2011

The National Institute on Aging is a fabulous resource and according to their latest e-Update, this month is the first month the baby boomers born between 1946 and 1964 begin turning 65!

The medical influx for Medicare will no doubt cause huge sweeping changes in Medicare benefits…or sink the Medicare ship entirely but that’s another subject for another time.

The National Institute on Aging does a great job informing us – even offering seniors cost free help, education and booklets on a variety of important subjects.

The Kitsap County contacts for seniors are below.

Kitsap County Senior Resources

Area Agencies on Aging Learn More
Kitsap County Division of Aging & Long-Term Care
Address : 1026 Sidney Avenue
: Suite 105
City : Port Orchard
State : WA
Zip : 98366
County :
Website : http://www.kitsapgov.com/altc
Contact Email : sloop@co.kitsap.wa.us
Office Phone : (360) 337-7068
Information Phone : (360) 337-5700
Regional Phone : (800) 562-6418
Description : -Area Agency on Aging -Senior Information & Assistance serving Seniors 60+. -Caregiver Support Program & Respite -Medicaid In-Home Services Case Management -Long Term Care Ombudsman -Sponsor: SHIBA (Statewide Health Insurance Benefits Advisors)
Special Notes : We are in the Givens Community Center.
Hours : 9:00 AM – 4:30 PM – Pacific Time, Monday-Thursday
Directions : From Hwy 16 take the Port Orchard Tremont/Old Clifton Rd exit. From the south turn right, from the north turn left onto Tremont. Follow to Sidney Ave, turn left and go 3/4 mile. We are on the left. view on map
American Indian Tribes and Tribal Organizations Learn More
Puyallup Tribal Health Authority
Website : http://eptha.com
Office Phone : (253) 593-0232
Special Notes : Adult Day Care, Emergency Response Systems, Financial Assistance, Home Repair, Home Modification, Information and Referral/Assistance, Home Delivered Meals, Congregate Meals, Personal Care, Sr. Center Programs
Hours : 8:00-5:00 Pacific
Directions : view on map
Quinault Indian Nation-Senior Program Manager
Address : PO Box 189
: 1214 Aalis Drive
City : Taholah
State : WA
Zip : 98587
County :
Contact Email : mmills@quinault.org
Office Phone : (360) 276-8215
National Toll Free Phone : (888) 616-8211
Special Notes : Caregiver Programs, Case Management, Home Health Services, Adult Protective Services, Emergency Response System, Employment Services, Financial Assistance, Information and Referral/Assistance, Home Delivered Meals, Personal Care, Respite Care, Government Assisted Housing, Sr. Center Programs
Hours : 8:00-4:30 Pacific
Directions : view on map
State Agency on Aging Learn More
Washington Aging & Disability Services Administration
Address : 640 Woodland Square Loop S.E.
: PO Box 45600, Olympia, WA 98504
City : Lacey
State : WA
Zip : 98503
County :
Website : http://www.adsa.dshs.wa.gov
Office Phone : (360) 725-2300
Information Phone : (360) 725-2300
National Toll Free Phone : (800) 422-3263
State Phone : (800) 422-3263
Regional Phone : (800) 422-3263
Description : Administers service programs for in-home, community and residential LTC for seniors and persons w/ disabilities, including persons with developmental disabilities.
Special Notes : The Aging & Adult Services Administration (AASA) recently merged with the Developmental Disabilities Administration to become the Aging and Disabilities Services Administration (ADSA).
Hours : 8:00 AM – 5:00 PM – Pacific Time, M-F (closed holidays)
Directions : From the north take I-5 exit #109. Turn right onto Martin Wy. Turn left at first light onto College St. After 2 lights, turn right on Woodland Square Lp. ADSA HQ is a 4 story building on the right. view on map
Elder Abuse Prevention Learn More
Northwest Justice Project (CLEAR Sr.) View Coverage
Address : 401 2nd Avenue South, Suite 407
City : Seattle
State : WA
Zip :
County :
Website : http://www.nwjustice.org
Office Phone : (888) 387-7111
State Phone : (888) 387-7111
Languages : ,Spanish
Description : CLEAR*Sr is a statewide toll-free client access system for people 60 years old or older to obtain free legal assistance with civil (non-criminal) problems.
Hours : M-F 9:30AM-12:30PM, Tuesday evening 4:30PM-6:45PM
Directions : view on map
Adult Protective Services View Coverage
Address : 4710 Auto Center Blvd.
City : Bremerton
State : WA
Zip : 98312
County :
Website : http://www.aasa.dshs.wa.gov
Office Phone : (360) 473-2192
Information Phone : (360) 473-2192
State Phone : (888)833-4925
Languages : ,Ask for interpreter
Description : Adult Protective Services include investigation of alleged abuse, neglect, exploitation or abandonment of vulnerable adults, and emergency support services to those found to be in need of protection.
Hours : 8:00am – 5:00pm, M-F
Directions : view on map
Nursing Home Residents Neglect Hotline View Coverage
Address : P.O. Box 45600
City : Olympia
State : WA
Zip :
County :
Office Phone : (800) 562-6078
State Phone : (800) 562-6078
Description : Provides assistance for consumers who want to register complaints regarding licensing, incompeteince of staff, cleanliness, safety, treatment of patients, quality of care, excessive fees, unethical, improper or unprofessional conduct of staff.
Hours : Hotline is open 24 hours a day. Calls are returned M-F, 8:00am to 4:30pm.
Directions : view on map
Health Insurance Counseling Learn More
Statewide Health Insurance Benefits Advisors (SHIBA) View Coverage
Website : http://www.insurance.wa.gov
Office Phone : (360) 475-6649
Information Phone : (800) 562-6900
State Phone : (800) 562-6900
Languages : ,Chinese,Korean,Russian,Spanish,Tagalog
Description : A volunteer-based service whose mission is to give you answers. We can help you understand your health insurance, compare policies, process medical billings, pursue claims or appeals, detect and report fraud, and help you learn your rights and options.
Hours : Phone lines are open 24-hours a day. Calls are returned by volunteers M-F.
Directions : view on map
Statewide Health Insurance Benefits Advisors (SHIBA) HelpLine View Coverage
Website : http://www.insurance.wa.gov/shiba/shiba_mission.shtml
National Toll Free Phone : 1-800-562-6900
Description : SHIBA has volunteers who can help you with your health care coverage questions. You get free health care coverage education, assistance, and advocacy.
Directions : view on map
Legal Services Learn More
Free Legal Services for Seniors View Coverage
Address : 1950 Pottery Avenue, Suite 17
City : Port Orchard
State : WA
Zip : 98366
County :
Office Phone : (360) 876-9221
Description : If you’re are over 60 you are eligible for free legal advice. We can help you if your legal needs fall under public entitlements, health care, housing, guardianship, protective services and consumer transactions. Give us a call, we can help.
Hours : 9:00am – 5:00pm, M-F
Directions : view on map

What’s Your Aging IQ?, an updated booklet from the National Institute on Aging, helps answer questions and separates fact from fiction about aging and health. Based on scientific research, this illustrated, 24-page booklet lets readers test their basic knowledge of aging. Take the quiz, based on eight brief stories—in print or online—to see how much you know about heart health, bone health, eating well, and more!

Available FREE:

* Read online, download, or order print copies, or take the online quiz: What’s Your Aging IQ?

* Call toll-free: 1-800-222-2225 or 1-800-222-4225 (TTY)

http://www.nia.nih.gov/HealthInformation/Publications/

I wholeheartedly recommend their free booklets, especially,

Exercise & Physical Activity: Your Everyday Guide from the National Institute on Aging.  Also available in Spanish.

More later… Sharon O’Hara


Seniors and Physically Challenged Move On With Their Pets

Tuesday, November 16th, 2010

Greetings… I hope this works – if it does, thanks Angela!
Sometimes a point is reached where our best friends need more exercise than we can give them and treadmills come into play, thanks to such wisdom from the Dog Whisperer and his fans. My dogs have a good fenced area to play but that does not take the place of walking them. My dogs and I are learning about treadmill work-outs and I thought it might be interesting to you and to those seniors or physically challenged who might be finding it more difficult to keep their pets exercised.
Please excuse these amateur films…and I promise to get better..
More later… Sharon O’Hara


COPD, Professor William MacNee Clicked for this COPDer

Friday, September 17th, 2010

FLASH

Ref:  Early detection public COPD Spirometry,  World Spirometry Day and World COPD Day

I called our health district yesterday and spoke with  Cris Craig, Kitsap County Health District Public Information Officer.  She couldn’t answer my question about the health department offering free spirometry to the public.  She did say in a cheerful voice she would call in about three weeks with a response.  THAT is good news and she didn’t ask what COPD was – even better..  A hopeful sign and may mean that Spirometry will be offered and made available to the public.  I believe in miracles.

Professor William MacNee and the Royal Infirmary of Edinburgh Scotland, UK website has superb graphics – the best explanation of COPD (Chronic Obstructive Pulmonary Disease) I’ve seen in one place.  His ‘The Latest Trends in COPD Research’ graphically shows why early detection Spirometry is important.

For many of us COPD is an ongoing magnet for other disease, including some really difficult stuff.  COPD and lung disease can be the beginning of a long list of personal medical challenges expanding the patient’s medical disease library.  Whatever needs to happen to avoid COPD in your life get tested for early detection and do whatever is needed to get it done.

My son, Al and I were visiting family in Northern Norway  in1997.  I didn’t know then my 40 year smoking habit was almost over.  And so was I.   I was beginning to feel sick.  The day after this picture was taken, I had to see a Norwegian doctor.  She examined me and prescribed medications for Pleurisy and Chronic Bronchitis.  The medication worked, the pain receded and we were back on schedule.   Within a couple weeks after this picture was taken and five days after returning home, I was in the hospital.

Life as I’d known it was over.

COPD is a friendly disease.  For me, once Emphysema (COPD) got settled in my lungs and got comfortable, she began to invite her Other Stuff Disease buddies for a sleep over.  Trouble is, they stayed over and didn’t go home.  They joined COPD trying to play Havoc with my health and life.

Following COPD was an open lung biopsy and Sarcoidosis – Sleep Apnea – RLS – Psoriasis – Venous Stasis Dermatitis  – Cellulitis – High Blood Pressure – Lymphedema – and  bone-on-bone Arthritis, left hip followed – to name a few.

Early detection Spirometry can stop COPD early – before it’s too late.  Ask your doctor.

This is where it gets tricky.  Health care is a huge problem.  COPD generally  takes twenty years developing before a person mentions symptoms to the doctor and by then about fifty percent of the lungs are destroyed….leading the patient to a long slow smother and the taxpayer choking form the cost.

Offering free Spirometry testing for early COPD detection gives the individual  warning.  If the problem is not genetic, it can be turned around. Telling isn’t enough – SHOW people what COPD can do to them and their families.  Let them meet willing patients who can show and tell… a real reality show.

Exercise works and muscle utilizes oxygen better than flab.  We can breathe better and move easier.  Exercise and understanding COPD gives us a quality of life back – to be the best we can be.  The recumbent trike takes us places we couldn’t easily go without one – fun stuff,  building muscle at the same time. We must keep moving … ask your doctor.

I did not qualify for lung reduction surgery or I would have opted to get it ..not enough good lung and I heard rave reviews from patients who had had one.  One COPDer told me the lung reduction surgery restored his life back to ‘normal’ and lasted about five years before time and COPD danced ahead.  Ask your doctor about it.

Pursed lip breathing training is a must for COPDers – it keeps us out of the panic mode and out of the hospital.  It has for me…and I tested it with my oximeter.Talk to your doctor about pulmonary rehab.  It is never too late to get better through our own efforts…what does your doctor say?

Photo taken by the photographer who traveled with the Trek.  This photo shows me on my recumbent trike flying the  COPD/EFFORTS safety flag and pedaling over Deception Pass with the American Lung Association of Washington’s three day bike ride – the Trek Tri Island.

It was the first time I had been away overnight from my house in seven years – since Harrison Hospital in 1997.  A slow trike rider, it is thanks to the wonderful volunteers who hop scotched me and my trike ahead of the other 200 plus bike riders time after time that enabled me to pedal 50 miles of the 137 mile trip. I felt free again.

Key motivators were the Shortness of Breath Study at the University of Washington Medical Center that I was lucky enough to qualify for and my online support group, EFFORTS.  Proof to me that  educating COPD patients work.

Stroke patient, Mary Griffith and her butterfly and gold star fingernails caught my eye the other day – more about Mary and husband, Doug later)

Kitsap County Health District … Will you be the first county health district in the nation to see the fiscal benefit of early detection Spirometry to protect citizens of ALL ethnic background.

The Kitsap County taxpayer and COPD future could rest in your hands.

Thank you Professor William MacNee for a great COPD informational website and allowing me to use it here.

http://www.efanet.org/activities/documents/WMcNeeLatestTrendsinCOPDResearch. pdf

More later… Sharon O’Hara

Part 4 of 4


Googling for COPD Finds an Old Letter

Monday, September 13th, 2010

I wrote the following about 2004 for the American Lung Association and re-found it goggling for COPD.  I’m posting it here in hope you will see the value in early detection Spirometry testing.

“Hungry for Air: Breathing Better Together

“Living with COPD/Emphysema and Sarcoidosis was a living death. I existed. I struggled to breathe, when I moved I panted, gasped for air like a fish out of water.

As I slowly showered and dressed, ready to go somewhere, I couldn’t sit down to rest. I fell asleep.

I went from a physically active life landscaping, restoring a wonderful property in Port Townsend to a blob who existed in front of her computer.

I searched the world web to discover what COPD/Emphysema was – what Sarcoidosis was, everything, anything I could find out about my diseases and the medications I took.

I couldn’t sleep in a bed – I couldn’t breathe – I dozed sitting in a chair.

By the time I arrived at the Pulmonary Department at the University of Washington Medical Center, I believed my days were numbered. Previously diagnosed with COPD/Emphysema, an open lung biopsy showed the fibrosis and granulomas of Sarcoidosis evenly throughout both lungs.

Without energy, I felt isolated, without a purpose, a shell, a mockery of the person I used to be.

I regretted a 40-year smoking habit, but didn’t dwell on it. The single most difficult thing I’ve ever done is stop smoking. I craved cigarettes and for the first time understood a drug addict’s ‘craving’ for a drug. I craved a cigarette many times a day, then almost daily for more than two years. Even today, occasionally the urge to smoke a cigarette becomes almost overwhelming.

That is how I felt then. Today I’m energized with purpose.

I found a support group online – the non-profit EFFORTS, begun by COPD’rs, run by COPD’rs and filled with folks like me working to change the world’s awareness of COPD. I want other lung folks to know they are not alone and how they can lead the best quality of life possible.

I want to see Spirometry tests for patients. common place among physicians – to catch COPD early – before it is too late. Other than stop smoking, the single most important thing Lungers can do for themselves is exercise.

And from the time I learned of the American Lung Association® of Washington’s Big Ride Across America, it is my dream – my goal.” – Sharon”

People Gotta Breathe

Fish Gotta Swim - People Gotta Breathe

Part  2 of 4     More later… Sharon O’Hara


Recumbent Trikes and Good Health Hand in Hand

Tuesday, August 17th, 2010

The recumbent trike is God’s gift to the physically challenged.

The 3-day Trek Tri Island bike trip with the American Lung Association of Washington a few years ago was the first time I had left the house overnight in 7 years. Not since COPD and then Other Stuff began to hit.  Pedaling around the bay from the Port Townsend/Keystone ferry toward Oak Harbor was the first time in 7 years I felt normal again. The recumbent trike set me free.

The Mason county couple in the “What is COPD” tee, ride for good health,  fun and exercise. 

Hey, Trikes are Fun!


He doesn’t let Hip Dysplasia in both hips stop him from moving but at a much slower pace than his wife. His wife is a fast walker challenging herself to move even faster.

Until he began riding the recumbent trike delta, (two wheels in back), she had to move slowly, at her husband’s pace or he quickly was left behind.

I was told the recumbent trike gives him the edges to not only keep up with her; he challenges her to move those hips even faster. The recumbent trike lets them exercise together for good health in fun and harmony.

I took a video of them…unedited…so you can see how they ride.

A family affair… the gentleman on the delta is only 92.

Following are more photos. My mother’s first time on a bike in about 75 years when she learned to ride the delta at 88 years old.

Ask your doctor about riding the recumbent trike for exercise and fun adding to living a quality life and follow her/his recommendations. Check with the local bike shops and bike clubs for further information or ask here on COPD and Other Stuff.

For COPDers – muscle utilizes oxygen better than flab and the legs are the largest muscles in the body. The bike is a great form of exercise and the recumbent trike can be a kinder, gentler form of cycling…the comfort mode…or not.

The West Sound Bike Club may have two recumbent trikes to show on the 18th. One trike is a delta with an electric assist. The other is a tadpole. Swing by the booth and check them out.

WEST SOUND CYCLING CLUB AUG, 2010
BOARD OF DIRECTORS
PRESIDENT Lee Derror 360 271-4838
lderror2@yahoo.com
VICE PRESIDENT Don Czeczok 360 405-1834
dczeczok@wavecable.com
TREASURER Laurie Clayton
SECRETARY Roberta Berry 360 638-1685
beeryra@centurytel.net
RIDE COORDINATOR Tim Baker 360 340-5944
rides@westsoundcycling.com
bakertj@hotmail.com
Freewheeler: Frank Lane 253 857-6044
editor@westsoundcycling.com

Tour de Kitsap: tdk@westsoundcycling.com
WSCC website: www.westsoundcycling.com

Wed. 8/18 11:00am – 6:00pm – Thurs. 8/19/2010 0800 – 2:00pm

West Sound Safety and Health Expo 2010 Free!

Kitsap Conference Center & Bremerton Boardwalk
100 Washington Avenue
Bremerton, WA 98337
Contact: Linda Fulton 360.473.5918

LOCAL BIKE SHOPS

More than one of the following bike shops may sell and service trikes.

BI Cycle Shop 206-842-6413
Classic Cycle 206-842-9191
Kitsap Key and Bike Shop 360-373-6133
Olympic Bike and Skate 360-895-2127
One Way Down Biking 360-633-6649
Rainier Cycle Sports 253-756-2117
Silverdale Cyclery 360-692-5508 (Sells and services trikes)

Gregg’s Greenlake Cycle
The free clinic will start at 6:30pm and go until around 7:30pm. There will be light refreshments provided.
info@greggscycles.com or call (206) 523-1822 ext. 119

The following URL contains the most cycling URL information of any blog I’ve seen.

http://www.recumbentblog.com/ Scroll down on the right until you find Dealers.

More later…. Sharon O’Hara


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About This Blog

This is a patient to patient blog to exchange information and resources...from COPD (Chronic Obstructive Pulmonary Disease) to Arthritis to Cellulites to Sarcoidosis to Sleep Apnea to RLS to Psoriasis to Support Groups to Caregivers and all points in between. Written by Sharon O'Hara.

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