Tag Archives: Rheumatoid Arthritis

Lymphedema, Bone on Bone Arthritis, COPD – Prayer, Predisone, Water Workouts Help Heal this Patient

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!

Kristin Okinaka, a reporter at the weekly CK Reporter AND a runner recently came out and wrote an article and took a photo that shows some of my recumbent trikeshttp://www.pnwlocalnews.com/kitsap/ckr/news/119501909.html

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….”

The pilot, run by Portsmouth Hospitals NHS Trust, Solent Healthcare and UCB Pharma Ltd, received positive feedback from participants. http://www.arthritiscare.org.uk/NewsRoom/Latestnewsstories/Exercisepilotissuccessfulforrheumatoidarthritis

More later…thanks for listening… Sharon O’Hara

Arthritis Folks Move On

Supervised exercise for Rheumatoid Arthritis patients can show dramatic improvement in their quality of life, according to a recent study presented in Copenhagen at the Annual Congress of the European League Against Rheumatism. ScienceDaily reported the announcement, June 23, 2009.

Led by Dr. Miguel Souse of Instituto Portugues de Phematology in Lisbon, Portugal, the three-month study revealed, “”When joints are stiff and painful, proactively taking exercise might seem undesirable for people with RA. However, our study has demonstrated that regular and supervised moderate aerobic workouts and strengthening exercises may be extremely beneficial for both a patient’s physical and mental health, with a corresponding effect on quality of life. The challenge for physicians is to provide suitable motivation and reassurance to their RA patients in order that they initiate and stick with such a programme.”

If regular bone on bone hip joints react the same as RA, it is easy to be reluctant IF the patient is worried the bones will get ground down further.

What do the bone doctors think and who leads such ‘supervised exercise’ here in Kitsap County – anyone?

The percentages of reported improvement are dramatic… such as 55% improvement in the “sit and stand test * 62% patients reported less need for steroid use * 33% improvement in daily physical functioning, such as dressing and walking. * 40% improvement in the Depression Anxiety Stress Scales is significant.

The study patients worked out three times a week for 50 -60 minutes of aerobic and strengthening exercises for three months.

I have many questions to ask at the annual Arthritis Foundation Conference next month – free to the public.

The Free Public Symposium, “Taking control of Arthritis Together” is Thursday, July 23, 2009 from 08:30 am to 12:30 pm at the Shoreline Conference Center, 18560 1st Ave. NE, Shoreline, WA.

The program includes a free osteoporosis screening by the Washington Osteoporosis Coalition and includes such notables as:

Basia Belza, PhD. RN – Aljova Endowed Professor in Aging University of Washington School of Nursing.
Julie L Carkin, MD – The Seattle Arthritis Clinic Director, Osteoporosis Services Northwest Hospital
Larry Wienkers, PharmD
Sue Romanick, MD – Rheumatologist, Private Practice
Jane Hoyt Buckner, MD – Associate Member Director, Translational Research Benaroya Research Institute
Diane Sowinski – Patient Advocate, Personal Trainer & Arthritis Veteran
Angelika Burns – Personal Trainer, Will Tree Fitness Wellness Coordinator, Bayview Wellness Center

If anyone is interested in carpooling or needs a ride, let me know.

Pre-Registration is required.
Contact Annie Rehn at (800) 746-1821 ext. 101 or arehn@arthritis.org
Have a great week – more later.– keep moving.… Sharon