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 trikes… http://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