 |
|
 |
 | Samantha on Share Your Story |
 | Beth on PFO, patient identification ca… |
 | Julie L. on Share Your Story/Contact … |
 | CindyW on Share Your Story/Contact … |
 | Kristy B on Share Your Story/Contact … |
Following this story
Medical Mystery : The Runner who lost his voice
http://www.nationalpost.com/m/blog.html?b=life.nationalpost.com/2011/09/20/medical-mystery-the-runner-who-lost-his-voice&s=Opinion
Flip Flops, Groin Kicks and Physicians without Heart have no place in PFO Patient CareBy David Dansereau,MSPTI admit, I’ve needed a boost to get back to my know-stroke blog after almost a month away from posting. You see, I’ve been working hard at expanding my physical therapy business recently but have never lost sight of my goal for this blog and/or for the larger vision of our non-profit group the PFO Research Foundation, for which I currently serve as Vice President. It took several recent impactful posts by PFO patients on my blog who shared their stories recently here to get me going again. I’m not going to say it took a groin kick because this is the exact statement a physician made at our 2011 PFO Summit in Boston last month that has left me short on words until this post. The recent patient stories I reference you can find here: See Christine’s and Stephanie’s recent posts. They both highlight the continued need for better patient education for PFO/stroke/migraine. As I read their stories I had a flashback to our PFO Summit and to the physician who will remain unnamed.
 This physician addressed a roomful of medical professionals and a handful of patients as he spoke at conference about PFO and migraine. In his presentation he proceeded to describe what advice he would suggest if a friend asked if he should consider PFO closure as an option for managing migraines. I am paraphrasing because I haven’t yet been given the opportunity to review the replay of the conference, but his advice is stuck in my brain because it was so out of character and inappropriate. Implying that the patient would be better off “getting kicked in the groin” than having a PFO closed percutaneously is ridiculous, and perhaps riduculous is just the angle this doc was going for, but that was his advice and I infer his medical opinion of PFO closure. Perhaps too, medical advice like this is also exactly why patients like Christine and Stephanie and many more in our patient group need to have their stories told to demonstrate the need for better, much better care from the medical community. My advice to physicians-Stop flip flopping, as many of your colleagues are currently doing when it comes to deciding how to best treat PFO. I hope someone from conference will step up and address the flip flop issue here (please comment below).
My advice to patients- Ask questions,get references,research and list your pros and cons, ask more questions,even if you know the answers may be potentially ugly and by all means get involved to make a difference. Inquire and learn all there is to know about clinical trials and the device options vs medical management,then once all this work has been completed sleep on it until your gut feels at rest and your heart will then be ready to do the heavy lifting ahead. Oh, and speaking of heart, Christine said it best at the end of her recent post,
|
Yes, I admit, my posts these days on my stroke blog have been few and far between. I have been extremely busy (more on this shortly) but I had to comment on this story right away before I bookmarked it and it got eventually lost in a sea of other things “to do”.
Liz Bestic, a health reporter in the U.K. recently heard the words “You have Had a Stroke” . I would otherwise have no reason to know this other than Google Alerts gives me a poke every time the words PFO (patent foramen ovale) and exercise (as well as a few other PFO/stroke combinations I follow) appear in the news and shortly thereafter in my email. Mostly these days I don’t get through all the alerts but “PFO Exercise Guidelines” still are tops on my radar because it is an area where much uncertainty remains and physician/patient EDUCATION still is lacking or non-existent depending upon who you ask.
Liz Bestic reveals in her great article about her stroke and PFO diagnosis that she is exercising while she ponders a difficult decision on what to do next. While this was the last interesting point made in her article and is what probably triggered the PFO/exercise/Google “link” that now has me linking her to my blog I hope it isn’t the last on this important theme. I do wish Miss Bestic well in her recovery and on her decision on how to best treat her PFO. I also hope it may happen that she will find it timely to perhaps do another follow-up story as she now will no-doubt become an expert on the same PFO/stroke journey many of us have already taken. Miss Bestic may in fact be in a unique position as a survivor and health reporter to help improve this education gap. Who knows, perhaps Google may be able to help with this important alert too. I welcome all your comments, and especially those of Miss Bestic if she happens to have her own name “tagged” and finds us here.
Here’s the link to her article and it is worth the read right away, don’t just bookmark it “for later” 
David Dansereau for know-stroke.org
by David Dansereau for Know-Stroke.org
And is CBS and perhaps the folks involved in Miss Branson’s care that evening guilty of not knowing the stroke warning signs?? You decide…
There are reports from LA circulating that a local reporter , Serene Branson, may have experienced a stroke or “some kind of neurological event” while reporting live during the Grammys Sunday evening in Los Angeles. This is certainly a terrible event for Miss Branson to have to deal with, and I do wish her the best. At the same time I also encourage her, at her earliest convenience , to go straight to the ER to be checked out ASAP. It is certainly understandable that Miss Branson would want her video replay to be pulled off the web but without seeing it and based only on the comments here it appears that reports may be correct. The most disturbing part of this story is the update from CBS here:
This was the update from CBS today:
UPDATE: CBS 2 posted a statement about Branson’s condition, saying “Serene Branson was examined by paramedics on scene immediately after her broadcast. Her vital signs were normal. She was not hospitalized. As a precautionary measure, a colleague gave her a ride home and she says that she is feeling fine this morning.“
If Miss Branson indeed was slurring her words and had jumbled speech “all of a sudden”, then you simply do not allow someone to go home and sleep it off. The best thing CBS could do, in my opinion, in addition to urging Miss Branson to seek follow-up medical care, would be to allow the replay of this event with Miss Branson’s permission. Is she did indeed have a stroke, then it would be a once in a perhaps lifetime event for teaching stroke education “in real time” and learning the warning signs. Read the mixed comments that follow the story here and you’ll see why we need to KNOW-STROKE !
I welcome your comments and please chime in if you actually witnessed this report live during the Grammys or the replay before it was pulled by CBS.
David Dansereau (Know-Stroke.org)
“Stroke Recovery is not easy, but as Jamie Coyle and her friend Tedy Bruschi will say, you have to start by adopting an attitude to “Never Give Up”! - DP Dansereau, Know-Stroke.org
As a physical therapist one of my most important tasks is to motivate my patient, learn what their true goals are for recovery, and find out what may have motivated them to action in the past (prior to their stroke).
Speaking from personal experience during my own stroke recovery, the key to achieving the best possible outcome is to not give in and listen to that part of the brain that says, “enough is enough” and instead push through barriers and adopt an attitude to “Never Giving Up”. Jamie Coyle knew from the first day I met her in her hospital bed that she wanted to return to skating, and her goal was even more specific, she wanted to play hockey again. As a hockey player myself, it was not hard to connect with her and respond to her question to me at that first meeting, “Will I skate again”? I mentioned to her she’d need to keep the faith, maintain focus and most important, do the work. She has truly owned that message and invested everything into her recovery, and I am so proud to see her back on the ice with her peers doing something she loves. Way to go Jamie!
Watch the video feature below by Varsity Life’s Melanie Pellowski on Cox Sports and Channel 10 . Melanie has been following Jamie’s recovery and in turn has has done a great job helping to spread the word about stroke awareness.
According to Patriots.com The New England Patriots will honor former linebacker Tedy Bruschi in a special halftime ceremony during tonight’s game against the New York Jets.
Beyond his impressive numbers on the field and becoming an all time New England fan favorite, his peers and other stroke survivors look at Tedy with inspiration for his accomplishments off the field and for his dedication to the New England area. After Bruschi suffered a stroke in February 2005, he dedicated himself to raising funds and awareness to fight stroke along with the American Stroke Association. Bruschi established “Tedy’s Team,” a vehicle to help battle stroke, the number one cause of disability in the United States. Members of Tedy’s Team have run in the Boston Marathon and the Falmouth Road Race and have raised hundreds of thousands of dollars for stroke research. Bruschi returned to the lineup for the final nine game of the 2005 season following his stroke.
In a recent interview with the Boston Herald, Tedy spoke of his special connection with the fans after coming back from a stroke in 2005. During the conference call, he talked about what their support meant to him. Here’s part of that interview:
”I needed that (fan support). I needed it because there were times during my comeback . . . where I thought I wasn’t doing the right thing,” he said. ”This wasn’t a knee injury or a shoulder injury I was coming back from. Of course everyone is supportive and everyone wants you back there. But fans helped me with stories of how they overcame adversity. I got support from stroke survivors also and how they were able to comeback.
”Their comebacks were very different from mine,” he went on, ”but learning that from them really helped me a lot. The doubts that I had at times, I really needed the support from fans to know they were behind me.”
Fans sent him emails. Letters got to his house with just his name and city on the envelope. No street address.
”That’s the way a lot of (fans) got their letters to me, and I needed that,” he said.
see the full Boston Herald Interview
[Personal Sidebar] One recent comment on my blog shows just how Tedy’s work off the field with Tedy’s Team helps:
I am 58, almost 59 (in Jan) and had my life saved by the ads that Tedy did regarding stroke defense. I had just had an arterial bypass operation in my right leg and was talking to a nurse practitioner regarding pain management. I realized that my left arm had gone numb and I did not seem to be able to speak properly. This was mentioned to the nurse practitioner and she agreed that I was having a stroke. Turned out that I had 4 tia’s and am now on warfarin as a blood thinner and will have the hole in my heart repaired after I recover from the arterial bypass. If not for Tedy’s ads and websites such as yours, I would not have known what was going on and might have not come out of it with minimal damage. Thank you for the work that you folks do. Paul
Posted by David Dansereau for know-stroke.org
According to About.com’s surgery blog Bret Michael’s is scheduled to undergo PFO closure in January. In this quick poll, I’d like to know how you think VH1 and Bret Michael’s new show Life As I Know It will address the controversial medical topic of PFO closure.
Should VH1 show Bret’s PFO surgery and discuss the controversy?
According to VH1 Life as I Know It premires Monday October 18th
View trailers from VH1′s Life as I Know It
To learn more about PFO visit PFO Research Foundation.org
posted by David Dansereau for know-stroke.org
It’s not necessary to broadcast a procedure that might not even be beneficial.
I want to know how he is getting to get this surgery. I have been in need of this surgery and have been told by several cardiologist that the FDA has it on hold and no one can have it!
“After all, accurate diagnosis and treatment of plica in the knee, or “plica syndrome”, has an accepted surgical option after conservative treatment and medical management has failed.”
–DP Dansereau, MS,PT for know-stroke.org
First, here’s some quick background:
Plica syndrome, while being quite well known to physical therapists and physicians specializing in physical medicine and orthopedics, is not a common term people are aware of, unless perhaps they’ve been diagnosed as it being the possible source of their knee pain. Plica-syndrome, often characterized by anterior knee pain, is most commonly found along the superomedial aspect of the knee.
The “plica” is due to remnant embryological tissue that compartmentalizes the knee during fetal development. The plica is sometimes considered a “vestigial” structure, which means that it has lost its ability to function over time and does not functionally affect an individual whether it is present or absent. It has been likened to the appendix, which can be a source of pain but lacks significant important function.
I’ll make a case here for quick comparison that a similar flap, or cardiac remnant in the atrial septum of the heart from fetal development exists. In the case of this heart anomaly, this “vestigial” structure is often referred to as a patent foramen ovale or PFO. This left-over fetal tissue sometimes takes the shape of a flap in some hearts. Some PFOs have been described as “tunnel-like” in appearance under autopsy.
Patent foramen ovale has often been depicted as a defect or an incomplete closure in the walls of the chambers of the heart. A patent foramen ovale can vary in size but the location is usually the same. As described in the literature, the flap like opening or hole is in the dividing wall (septum) between the upper two chambers of the heart – the left atrium and the right atrium.
Identifying a PFO is important because a PFO is a potential pathway for a blood clot to escape from the heart and travel to the brain, causing a stroke. Similarly, the plica in the knee can get trapped and irritated to a point where it impairs normal joint ROM (range of motion) and can cause often less debilitating but still serious limitation to ADL’s (activities of daily living) when compared to the devastating effects of stroke.
How does this heart defect occur?
In the womb, all babies have a PFO. This is because a baby does not use its own lungs to filter and oxygenate its blood. Instead, it receives oxygen-rich blood from its mother via the umbilical cord. This blood has been filtered and oxygenated by the mother’s lungs. The PFO allows this blood to be sent directly to the brain, which has a high requirement for oxygen-rich blood during fetal development.
How common are PFO’s?
In most people, the two flap-like sections of septum which form the foramen ovale (or hole) fuse together after birth to form a solid dividing wall between the right and left atria. However, in an estimated 15-30% of the population, this area of the heart doesn’t fuse together and remains open or “patent”. This opening makes it possible for blood to cross from the right atrium to the left atrium—this is called a right-to-left shunt. The danger of blood shunting in this manner is that if it contains small debris or a clot it has bypassed the body’s natural filter (the lungs) and can pass directly up to the brain and cause a stroke. Worldwide, it is estimated that approximately 500,000 people may suffer this type of stroke each year.
My Conclusion and the current Medical Paradox
When symptoms arise this is where my comparison between PFO and Plica go down separate paths. Here’s how current treatment differs:
Accurate diagnosis of both symptomatic plica and “symptomatic” PFO remains the predominant challenge. The main difference is currently only with one syndrome the option of surgical treatment is widely accepted. Why is symptomatic PFO not being fairly treated as a true medical syndrome?
I’d love for you to comment below.
DP Dansereau, MS,PT for know-stroke.org
More Information / References:
This article has not yet been published but it was submitted to Tom Ward at the Valley Breeze recently by Sharon Coyle, mother of Jamie Coyle, a young stroke survivor from Cumberland,RI. I have had the pleasure to get to know Jamie and her family over these past several years. If you remember, I originally featured Jamie’s story on my blog several years ago- here’s the link to that post with details on her story. I hope that by sharing this you get a sense of what a family of a young stroke survivor might go through, especially when they still do not know what caused Jamie’s stroke.
Other Cumberland families of young stroke survivors, like Tyler Perry in town have similar stories, and more questions than answers.
Encourage the Valley Breeze to help spread stroke awareness.
Jamie Coyle photo provided by Fightfor7.com
“I have been a Cumberland resident for 10 years now. I also grew up in Cumberland and my mother moved us away when I was 13 years old. My husband Jim and I have 3 children ages 21-19 and 14. Two years ago something happened to our family that has changed us forever. Our daughter Jamie was competing in a hockey tournament in Marlboro Mass. when she suffered a stroke at 12 years old. Her story can be found on fightfor7.com. In the beginning she really didn’t want to share her story with everyone at school however events have occurred to make her change her mind. That happened when we started hearing of other children in this town with the same story. We contacted the Health Department back in 2008. We also contacted the Center of Disease Control along with the President of the United States.
There have been 12 pedi strokes in our town in the past two and a half years. The center of disease control along with the health department have not tested anything as of yet. Jamie and I did put in a request to have the water, soil, and air tested. We are still waiting for this to take place. It makes you wonder what number of children they are waiting for to realize we have a situation on our hands. Believe me the last thing we want is to scare people. Our goal is to educate everyone in town to know the signs and act quickly to save a child. Most people would never think that a child can suffer a stroke. My family certainly didn’t. I remember the day 8-9-08 like it was yesterday. Imagine seeing your healthy child collapse during a sporting event. My husband and I new something was wrong and we rushed down to the bench. To our horror the coach from the opposing team was screaming at the ref to give our team a delay of game penalty. The Vermont coach was also telling the ref to move Jamie to the back bench in order for the game to continue. Sounds crazy right? This is a prime example why Jamie wants to educate parents, coaches, and teachers alike. Jamie was awake the entire time and could hear everything the coaches were saying. She was greatful that one of her coaches on the bench that day is the captain of EMT.’s in our town here. He of course had no intentions of moving her and summoned the ref to call 911 saving her life.
Two years into her ordeal and Jamie is ready to make a public service announcement to educate and possibly save others. We do not want to see one more family have to walk down this road. Jamie and I strongly feel to do testing even if we never find a link to the environment is better than doing nothing at all. We feel that talking about this problem can help families in many ways. Health coverage hardly covers the many needs for these children or new technology which could prove to be very beneficial to the children’s recovery. These children have their whole lives ahead of them and as a community and a state we should all do whatever humanly possible to help them succeed. They are our future. Our hopes are that every parent that reads this letter would like to meet with Jamie and see what role they could play to help her save others from the same fate. When a group of mothers assemble for the sake of the children the possibilities are endless. Mothers can move mountains together and suddenly the red tape disappears and money is no longer the issue. There is much more to be discussed. Please help Jamie to help others.”
God Bless,
Sharon Coyle
Jamies mom
Hey Sharon! You are right in saying that the day that Jamie had a stroke was the worst thing that you and Jamie had to go through. I will truly never forget one moment of our night. Jamie and Tyler are very strong, intelligent and inspiring adolescents and they inspire me. What we need to do is to stand behind them and encourage them to do the best that they can now and understand that was happened to them is not their fault. We have decided to let Ty and his stroke take its course and how we proceed with helping Ty will be based on his family, teachers and friends. You have already gone through this,Sharon-God Bless you, and now we have to do what we can for Ty. Thanks for sharing-Jamie, we love you-anything I can do ask for Ms.Perry
Know-stroke.org-Exercise Guidelines for PFO Patients Needed
The PFO Research Foundation recently met in Washington, DC for its first PFO Summit. I attended the event and was hoping for both practical and selfish reasons to get some clarity on exercise guidelines from some of the world’s top authorities on PFO. Instead, what I learned in one of the breakout sessions aimed at developing better guideline documents and educational materials for patients with PFO disorders is that we have a great deal more work to do to get better patient information out there. I reference a recent post to my blog from Sept. 28, 2010, at know-stroke.org to illustrate this point:
“I just found out I have a PFO after a cerebellar stroke and ministroke in 27 months. I am 45. Should I be scared to do cardio, how much, how long, what should I avoid? Thanks Dave, I appreciate reading something from someone who seems a lot like me.”
What should this person do? Known PFO, positive TIA/stroke and would like to continue exercising/working out. Is cardio fine? Are weights OK? What about swimming? Climbing at altitude? Diving? We know these situations may present increased risk but where do you draw the line?
Patients are turning to the web and patient forums for guidance clearly because they are not getting answers from their physicians or device manufacturers. It’s simply not enough to tell patients “you can’t avoid the valsalva maneuver*” in daily life. No kidding doc, really? Is that the best advice we can give?
I learned “off the record” after running a marathon that perhaps (running long distances) was not the best decision for me “down the road” with a PFO occluder on board. This inside information was shared with me by a physician recently after my primary cardiac physician had cleared me and stated after more than one year post PFO closure “if my legs could carry me that far and my brain was crazy enough to talk my body into 26.2 miles then my heart would be fine”. OK, so, what is safe? What should PFO patients be doing for exercise (or not doing) 1-3 weeks after closure? How about after 6 weeks? What is really so special about 6 weeks? Why not 1 year (or more)? Should every occluder device have its own post-op protocol based upon the design? Perhaps. What about exercise guidelines for known PFO/stroke confirmed without closure like the recent post on my blog I illustrated above. What about known PFO, no stroke, no closure but enrolled in clinical trial related to migraines? What about guidelines for that same patient sent home on meds or following sham closure procedure. Follow me?
[Personal Sidebar] I had contacted the device manufacturer that built my heart plug several years ago after I had PFO closure. I asked them, -NO-I challenged them to get their patient education website completed and build a useful patient resource to assist patients that were in my shoes. That was well over 3 years ago. The result: Still no website for patient education. Nothing. I’m still waiting…
Who’s to Blame??
Blame the FDA, insurance companies, poor clinical trial enrollment, whatever excuse we want to make, this is certainly not “best medical practice”, it is not acceptable and is in fact poor medical practice. As a practicing physical therapist, if I sent someone home after a total hip replacement and didn’t remind them that there were clear post operative hip precautions that they should be aware of following their procedure (and based upon the technique and specific device they had implanted in their body), I could be fired and sued if they went home and blew out their hip because I didn’t educate them. That is simply part of my job! Why are heart plugs different? The last time I checked they were still being inserted directly in the center of our most vital organ.
“Patients can’t continue to afford to be the pigs here. Patients are literally putting their “hearts on the line” and deserve so much better. When I ran the Boston Marathon in 2009 I didn’t recall any pigs passing me with a clinical trial advertisement on their bib.”-DP Dansereau
I certainly hope this post serves as a challenge to industry and physicians to be more responsible and get our collective acts together to set things straight for patients. At least that is why I continue to write this blog, and yes, industry, this blog creation was and remains my direct response to your failure to step up and do something. Truth is, I write most of my content on lunch breaks and late on Friday evenings after my responsibilities as a dad and business owner are complete. (This is at least my excuse why I frequently have typos in my posts.) I write this blog because in some way it helps patients ask more educated questions and hopefully make their medical care takers stay on their toes, at least that’s what I’ve been told. I have no financial disclosures to report, don’t know any venture capitalists, and have no potential gain if PFO closure proves to be a slam dunk for stroke prevention or migraine relief. I just own the peace of mind that I did something. Now, I must get back to my patients, and then perhaps go out for a run later this evening when I get done here at work.
Or should I ? Who knows? I’d love for you to comment here if you do….
Better Exercise Guidelines for PFO Patients
For know-stroke.org
* Valsalva maneuver: A maneuver in which a person tries to exhale forcibly with a closed windpipe so that no air exits through the mouth or nose as, for example, in strenuous coughing, straining during a bowel movement, or lifting a heavy weight. The Valsalva maneuver impedes the return of venous blood to the heart.
My question exactly …. At my one-month post-op appt. today my cardiologist said I should wait another two weeks before I start back to my cardio regime (running, cardio classes, swimming, etc.). Initially, he said four weeks. The question is when does a person reach the point where there are no recommended restrictions for exercise?
That is the million dollar PFO/exercise question Pam. I wish I had the answer for you but as you can see even your doc seemed a bit vague with your post-op exercise instructions. I did not go back to unrestricted exercise for almost a year following closure. I was working on restoring balance and stability and these are not exactly “high risk” activities. Because my post exercise instructions were also not that clear I went by what I learned in PT school about the rate of tissues healing. While soft tissue surrounding a joint may not be the same as cardiac tissue I did play it safe knowing that soft tissue injuries “or healing” need 12-18 weeks to fully “remodel”. In PT there is then a re-strengthening phase that goes in stages that often takes up to a full year to return a joint to full strength prior to when it was damaged. While this may be the extreme example, I decided I was not going to take a chance and blow my recovery with my most vital organ at risk. Those recovery guidelines I just outlined were my own and pls. take them for what they are worth but having that knowledge at least helped guide my own healing, both in my heart and my mind. I know you’ll also find out on the web other extreme examples where physicians are telling their patients it is safe to go running day 2-post-op. That’s why the medical community involved with PFO closure needs to do better educating and why we hope to get better guidelines established through our patient led group at PFOresearch.org
Thank you for your question.
David Dansereau
know-stroke.org
David,
I too am in the medical profession, as a retired, R.N. No doubt, it has helped me immensely to be able to ask questions, logical ones, of what to expect post closure. I too, have been met with the same, ‘you’ll be able to go back to work in a few days with a few limitations, like lifting and the like…’ or, ‘you’ll need to take it easy for awhile…’ all the way to, ‘you reallly should not lift anything above 3 pounds for 4-6 weeks…’
Then of course I was told, by my cardiologisit, of a 10 year old who had the PFO closure done, who, apparently felt well enough to shoot some baskets on day 3, and his device ‘popped out’ and embolized, and he died immediately… And, of course, he told me about the woman, who had her every 6 month echo for 1.5 years, then between the 1.5 and 2 year check up she had a stroke, and the echo revealed a huge scarring tissue in her atrium around/over and behind the implant. She had to have open heart to save her and get teh implant out!
On teh PFO research foundation FB page, I read of patients with weekly migraines, marked chest pain for 1+ year post closure, and I am left with a sinking feeling…am I a desperate guinea pig?
‘If’ the >13 lesions on my brain are in fact stroke sites, why did the 1st neuologist phoo phoo the then 4 lesions as, ‘normal to have one for every decade of life’ (I was 42), one year later, and now 13+ lesions, I was told by my 3rd neurologist, ‘it could be MS, but, because you have a PFO, we have to make sure it is not strokes, from the PFO.’ Then neurologist #4 & #5, concurred, I am having strokes, likey passing emboli through my PFO…’
I am presently scheduled for Feb. 11 for investigational cath as I am scared of the implant, and want the doctor to first look, and investigate teh secondary shunts, fix them, and then come out and reprot to me just how bad that PFO really looks. If he says, it is huge! well, i guess I will be scheduling a 2nd cath, for closure. (?)
But, what does ‘return to work’ mean, when you are a mother of 5 young children, still home. (I can’t ‘leave’ work) My toddler will still have emergencies that need rescue. And, if doctors do not give explicit protocol for family members to have the right expectations, then everyone will think wife/mom should be back to business as usual. We have around 10-15 loads of laundry around here weekly. Is pouring a gallon of milk (8lbs) for my toddler, over the weight limit? Can i lift from above my head, and, if so, how heavy should it be? If I catch my kids throw up flu bug, do I need immediate phenergan to make sure I don’t put too much pressure on my new implant,due to massive valsalvaing? should I be in cardiac rehab? Stroke Rehab? What do I report? Should I be working with a PT to gauge my activity tolerance? the days are ticking down to Cath Day…and somehow I am suppose to submit to this implant being put in me, without knowing these answers. And, if you are being told you have had >13 strokes in the last 15 months, do you delay the procedure? And, ‘if’ I have really had >13 strokes, why am I not in stroke rehab?
Michele~
(43 y.o. Mother of 6, married 23 years)
Sharon Coyle is discussing. 
carol Marler, and 
Brad are discussing. 
Leigh Perry are discussing. 
Michele, 
Pam are discussing. 
Sharon Coyle 12:26 am on January 1, 2011 Permalink |
Original posted at fightfor7.com by Sharon Coyle (Jamie’s mom)
December 25, 2010
Hi everyone,
We have so much to share with you all in regards to a CHRISTMAS MIRACLE but let me fill you in on some background first. First and foremost we wish you all a very Merry Christmas. I”ll take you back to a couple years ago when I first heard of an e-stim machine called the walk-aide. When Jamie was in spaulding they had used a similar machine on her hand. When we heard of the walk-aide Jamie wasn’t ready for it at the time. I contacted blue cross just to ask questions and get some info about the machine and of course ended up angry with our health coverage. We are the strongest country with the weakest health coverage for our children. My grandmother used to have a saying penny wise and dollar foolish. That sums up health coverage to me. I was watching a t.v. show that had a marathon runner on and she was a stroke survivor that could no longer run unless she wore the walk-aide. I remember it like it was yesterday when I coulnd’t believe that anyone could clearly see the benifits to her but her health coverage stated what I hear much to often and that is that machines like these are concidered experimental. Believe it or not they say the same thing about the benifits from acupuncture. Keep in mind that acupuncture is over 4,000 years old. I guess one could claim that blue cross is just a little behind the times. There are many benifits to Jamie with the use of this machine. First off it helps with foot drop so the wearer is safer. It corrects the foot to step properly to avoid long term problems with the knee, hip, and back. It is a full time job caring for a child that has had such a set back medically and advocating for that child is hard work on top of that. As a parent you just want to focus on your child getting better. Being an advocate is a very nice way of saying you have to become a fighter for everything your child needs. No one can ever underestimate a parents love for their child. I will never get tired and like the great Tedy Bruschi put it ‘NEVER GIVE UP’ my fight for Jamie. You all remember Dave Dansereau who Jamie considers part of our family. Dave who advocates for all stroke survivors young and old went on a mission with us to get Jamie the walk-aide. Dave got the ball rolling with a lady named Sarah Rotondo who works for a walk-aide company. Sarah has been working very hard with me and Jamie to win this battle with blue cross. We have never met with Sarah in person however she treats Jamie as if she was her own child and we are so grateful to have been connected with her. This brings me to Melanie Pellowski. She is the best reporter for varsity life if you ask me and Jamie. Melanie has done several stories on Jamie and has helped Jamie to bring awareness to child stroke through these stories and by sending viewers to Jamie site. So now we come upon Christmas Eve. The day was going great. We were enjoying family,friends,and great food. My beat friend Lisa LaZenberry stopped by later in the evening with her husband Chris and son David. I suggested that Jim made us a cocktail to make a toast that we are all healthy and happy. My friend Carin Martinez had given us all the fixings to make magaritas for this occasion. As Jim was making the drinks a text was coming in from Sarah Rotondo. This is the text exactly. ” Hi Sharon,I hope you and the family are looking forward to a festive and relaxing Christmas. I have some great news,someone saw the news piece on Jamie this past Monday and called our office in Austin to donate a walk-aide for Jamie. The walk-aide showed up at my house today and I can come to RI next week to get it programmed for Jamie.” UNBELIEVABLE!!!! CHRISTMAS MIRACLE RIGHT!!! There was not a dry eye in the house. I was trying to fight back the tears as I didn’t want Lisa’s husband to see me cry. I have that rep as being tough and wanted him to keep that idea. This is the best Christmas. A complete stranger caring for my baby. We don’t know who you are but thank GOD for people like you on this planet. It kills me that children in this country have to go without sometimes but know Jamie doesn’t have to. I can’t tell you all how much this means to us. This will be life changing for Jamie. This machine is so expensive but it can accomplish amazing things for the user. I thank you so very much from the bottom of my heart. May God Bless you always. We are humbled by all the support Jamie has and greatful for each and every one of you who help support her. Lastly we would like to thank Nick Mattera for all his work on this web-site so we can remember all the good things to take away from this journey. Not that we will ever forget Friday,December 24th,2010 the day an unknow person made an incredible impact to our daughters recovery. GOD BLESS Jamies mom