Posted by: seserdr1975 | October 26, 2013

Follow that Dream

Evening blogging friends. It was fourth of July weekend in 2009 that my life changed forever. I had been living the life of bachelor for nearly four years, basically spinning wheels and in many ways directionless. I was working, hanging with friends and not really doing much for myself. I had been dating. But I wasnt into it. I had convinced myself that, after a handful of dates that went nowhere, my CP was the main contributing factor to me not advancing any relationships. I was always selfconsious of my outward appearance. It was disappointing. But then someone who never met me and just saw a picture said I had “a nice smile”. Now…of course I couldnt argue with that! 

Even though I had been gun shy, I always pictured me with the happy ending. I FIGURED WHY NOT!! If someone had issue with my CP, it was their issue not mine! Luckily for me Melanie showed me and still shows me what unconditional love from a wife is. 

I preach fighting for yourself. But its really great to have someone to take life’s rocky road with everyday. Makes the CP like nothing more than an annoying hang nail. 

Posted by: seserdr1975 | October 24, 2013

It Does Take a Village

In five days I see the chiropractor! I should put a widget on Facebook! 

If there is one thing I have learned during this voyage, is that CP is one of the most prevalent, and yet underfunded conditions. Around 17 million afflicted, and only about $2 million in annual donations in R&D and assistance. That’s just….embarrassing. Some professional athletes have that as pocket change. 

We need far more visibility, and more vocal advocates. It will take organizations, websites, blogs  and as many loud voices as possible to make a bigger impact.

Posted by: seserdr1975 | October 23, 2013

An appointment with the future

So today thanks mom and dad, I have an appointment with a chiropractor on Tuesday. While I have only been to a chiropractor once before, I think that since its been such a challenge to find a doctor that, I don’t think I’ll be picky.

When you constantly feel like a stale pretzel, any tricks, and different ways to keep muscles loose will be great.

 

Interesting FYI.

According to “UpToDate” 45% of people with CP have seizures, also called epilepsy. Epilepsy without CP is challenging to manage but when you add it to the matrix of challenges associated with CP, strategizing for yourself and your child’s benefit can be daunting. As a parent of a child with CP, the feeling of uncertainty will probably be familiar territory for you, but it is even more amplified when seizures are added to the mix. I will try and be of some help to you.

What disturbs most parents and others about seizures is the lack of control and predictability associated with them. This is what shook me to my core. Seizures vary from one child to the next in duration, intensity, frequency, physical presentation, and controllability, and any one of these variables may itself change over time. Dealing with seizures can feel like a roller coaster. Luckily, recent advances in seizure prevention and treatment have made seizures less scary than they used to be.

My wife Mel has epilepsy. Having to help her manage her condition, has helped me focus on my challenges with stronger resolve and clarity. Medications, like Lamictyl and Kepra has created a door for a more even keeled life for those with Epilepsy and CP patient with Epilepsy.

Posted by: seserdr1975 | October 21, 2013

A Dad’s Point of View

Recently, my Dad wrote about some of his thoughts and experiences going through the process of having a special needs child. I thank him for sharing this with me and all of you.

“Being a parent of a child with CP or any other handicap or in fact any limitations is daunting in many ways but at the same time you don’t spend a lot of time thinking of the big picture. Most of your time and efforts are spent dealing with what is in front of you at the given time. From birth, the high risk nursery, going home, medications, diagnosis, therapy and surgeries you deal with each thing as it comes up and move on with the hope that everything is going to be better.
We as a family have always been optimistic that Todd’s problems were more of an inconvenience than a real handicap. We realized from day one that he was a fighter and that as he got older his spirit and great personality would overcome any physical obstacles that he might have. Early on when he was at his sickest in the hospital, Dr. Mangurten told me that there was only so much medically that could be done and for some unexplained reason some kids had this incredible will to fight and survive and others just didn’t make it. We were lucky that at every step of the way when faced with crisis, Todd’s inner spirit took over and he moved forward. A vivid example of this was when Todd was about 2 years old, it was discovered that he had a hernia that required surgery. While the procedure wasn’t very long, they told us that when he would be returned to his room he would probably be sleeping or very quiet. Well Barb & I were sitting in the room waiting when we heard this screaming coming down the hall and here was Todd being rolled into the room holding onto the bars of the crib and fighting to get up. To me, that was the clearest sign of his fighting spirit and that something unexplained was taking place. Over the years, each time Dr. Krom performed a procedure on Todd that would help him walk better by loosening his heel cord or working on his right hand, we all moved forward and knew that things would be better.
To this day, neither his mother, sister or I ever really believed that his CP was obstacle that couldn’t be overcome by hard work, Todd’s great personality and spirit. To all of us he has no limitations as to what he can accomplish.

~Bob Stone”

Seeing a Baseball game

Seeing a Baseball game

Posted by: seserdr1975 | October 20, 2013

Twelve things to know

Twelve things to know about cerebral palsy:

1. Cerebral palsy is a movement disorder caused by early injury to the part of the brain responsible for motor control/coordination. The signals sent from the brain to the individual’s muscles are not regulated properly, leading to a lack of control over movement. Over time the lack of muscle control can lead to secondarymusculoskeletal problems.

2. 17 million people worldwideare estimated to have cerebral palsy.

3. Although everyone with cerebral palsy has problems with motor control, they experience the coordination, balance, and/or postural issues in different ways and often face very different challenges.

4. Cerebral palsy is not contagious.

5. Many people with cerebral palsy may have a secondary diagnosis or related complication/s including epilepsy, blindness, hearing loss or deafness, speech/communication issues, sleep issues, learning challenges, intellectual disability, difficulty with bowel and/or bladder control, eating and drinking issues, spinal and hip abnormalities.

6. Current treatments/interventions for CP offer only about a 4-10% gain or improvement. -source, Dr. Iona Novak, CP Alliance Aus

7. Despite being the most common childhood motor disability, cerebral palsy has no dedicated US federal funding, and our private US based CP organizations have annual donations totaling less than 2 million dollars (that is the collective total!).

8. Many people incorrectly assume that cerebral palsy is a pediatric disorder. This is completely incorrect. In fact, there are more adults with CP than children.

9. Cerebral palsy has been a known condition for centuries, yet in the majority of cases specific causation is still unclear. In addition scientists still don’t know why certain conditions lead to the development of cerebral palsy in some  children but not others. For instance, prematurity is one of the most common associations in the development of cerebral palsy but we still don’t know why some premature babies develop CP and others do not.

10. 3 out of 4 people with cerebral palsy (both children and adults) are in pain and some are not able to communicate to describe their pain. -source Dr. Iona Novak, CP Alliance

11. Although CP is considered to be a non-progressive disorder, over time symptoms can worsen.

12. People with cerebral palsy have diverse talents and interests: They are artists, comedians, members of the military, attorneys, teachers, psychologists, leading physicians, musicians, actors, models, athletes, fitness instructors, entrepreneurs, scientists, and the list goes on!

Posted by: seserdr1975 | October 19, 2013

Being Involved

Twelve things you can do to support the CP community:

Every day is an opportunity for CP awareness! Here you will find a list of suggestions to help support people with cerebral palsy each month of the year. There are plenty more, but these can get you started and get ideas flowing:

1. Know which organizations are doing what for the CP community. For instance many people choose to give funds to United Cerebral Palsy assuming the money is somehow making its way to CP research. This isn’t the case. Although the name may lead you to believe otherwise, United Cerebral Palsy’s mission is focused on the supporting the greater disability community. Their work is important, but United Cerebral Palsy’s national mission does not focus on addressing the widespread and unmet medical and specific advocacy needs of the cerebral palsy community.

See the UCP name change petition for more details and sign it while you are there:

2. Participate in the NINDSPatient Advisory Core– This is a unique opportunity for individuals with CP and their advocates to share their voice with researchers. This is a newly forming advisory group at the Institute of NIH focused on funding brain research. They are looking for committed patients/advocates willing to interact with investigators who have expressed interest in engaging patients in the development of their research ideas and protocols but don’t necessarily know where to begin. Please contact me at cpdailyliving@gmail.com for further information about applying/signing up. International participation is welcome.

3. Propose an idea for World CP Day and/or review and vote on existing ideas: 

4. Stay connected to community-wide news on CP Daily Living’s facebook page

5. Inquire about participating in a clinical trial. You can start by looking here:www.clinicaltrials.gov. You may also ask your local research hospitals and doctors about local trials you or your child may qualify for. Having access to patients in order to complete clinical trials is a huge problem for scientists and one that we CAN help them with.

6. Reach out to equipment developers and offer ideas and feedback to them specific to your needs and perhaps the broader CP community. I have done this and most of them are deeply interested in having constructive and practical insight from equipment users and caregivers.

7. Remain educated about CP by participating in educational conferences and telecasts sponsored by our CP non-profits and research centers. Many members of our community remain disconnected from current information about cerebral palsy and ongoing cerebral palsy research. There is a calendar on the CP Daily Living homepagewith international educational events.

8. Sign up for the US CP National Registry (or one in your country) You can read here what the registry is about and how it can help the CP community.

9. Create awareness about cerebral palsy by sharing your personal story locally and/or with a member of Congress. Your voice and vote matter! If you meet with a politician tell them why supporting NIH (federal funding for research) funding and cerebral palsy research is important to you. I have scripts and some guidance on the website if you are interested in meeting with your local members of Congress. Here is a handy tool for finding your local representatives so that you can stay active in sharing your voice: http://www.house.gov/representatives/find/. Here is another resource for finding your state Senators: http://www.govtrack.us/congress/members.

10. Use social media to share facts about cerebral palsy and guide people to our CP organizations.

11. Financially support one of our US CP non-profits. Although there are many things you can do which don’t require money, improving the financial support of our CP non-profits will ultimately be the key factor leading to more research and support services for our community.

Cerebral Palsy International Research Foundationthe most robust and consistent funder of CP research

Pedal with Peteraising money for research through bike rides and walks 

Let’s Cure CP– new parent founded organization focused on fundraising for regenerative medicine research

Reaching for the Stars pediatric organization that has been working on opening up federal funding sources for CP but has also helped to fund a few CP research studies.

12. Share this list with someone you know!

 

Posted by: seserdr1975 | October 18, 2013

The benefits of a Cat on CP

Today was rough! I think I slept like a pretzel. When I got up like every muscle on my right side felt like it had done a marathon. After a HOT shower and a few anti-inflammatory drugs, I felt better and ready to take on the world. No progress on the Dr front. Next step, maybe my wifes neurologist can get her husband, who is an orthopedic surgeon.

Up until I was 26 my family and I never had any pets. When I was married for the first time, we got a cool female torti named Taffy and then a year later we got a dingbat male tabby named Beau. I never knew how they would affect (if at all) my daily grind with CP. After nearly 12 years, I can say having pets is huge help. One thing their tendency to do thier kneading thing on my right side is always a plus. The best thing is that they can be very relaxing. When you have spastic right sided hemiplegic, anything to relax the muscles is a bigger plus. If you have CP or a child with CP, I strongly encourage a pet. JUST NO BIRDS. Haha!

Today I was thrilled to be contacted by Alex Martin who told me about ViaCord (www.viacord.com). They are treating CP with umbilical cord blood cells they collect from newborns. There is an enormous amount of very useful research information on the site. Check it out.

 
Posted by: seserdr1975 | October 17, 2013

Recognized Challenges

This was something I found on Wikipedia regarding spastic cerebral palsy.

 

Difficulty in tracking CP progression through the later years

Unusually, cerebral palsy, including spastic cerebral palsy, is notable for a glaring overall research deficiency — the fact that it is one of the very few major groups of conditions on the planet in human beings for which medical science has not yet (as of 2011) collected wide-ranging empirical data on the development and experiences of young adults, the middle aged and older adults. An especially puzzling aspect of this lies in the fact that cerebral palsy as defined by modern science was first ‘discovered’ and specifically addressed well over 100 years ago and that it would therefore be reasonable to expect by now that at least some empirical data on the adult populations with these conditions would have long since been collected, especially over the second half of the 20th century when existing treatment technologies rapidly improved and new ones came into being. The vast majority of empirical data on the various forms of cerebral palsy is concerned near-exclusively with children (birth to about 10 years of age) and sometimes pre-teens and early teens (11-13). Some doctors attempt to provide their own personal justifications for keeping their CP specialities purely paediatric, but there is no objectively apparent set of reasons backed by any scientific consensus as to why medical science has made a point of researching adult cases of multiple sclerosismuscular dystrophy and the various forms of cancer in young and older adults, but has failed to do so with CP. There are a few orthopaedic surgeons and neurosurgeons who claim to be gathering pace with various studies as of the past few years[citation needed], but these claims do not yet seem to have been matched by real-world actualisation in terms of easily-accessible and objectively-verifiable resources available to the general public on the internet and in-person, where many, including medical-science researchers and doctors themselves, would more than likely agree such resources would ideally belong.

Posted by: seserdr1975 | October 16, 2013

D’oh!

When the center that specializes in treating adults with CP, can’t help you find a local doctor to evaluate me, that loud D’oh was me! 

They tried they really did. The gave me the name of a web site based in Canada, that has a search tool that ties to local CP specialists! Yay! They all deal in Pediatrics. Again D’oh.  

I don’t fret though. When all else fails, I have an amazing, wonderful, fantastic loving beautiful wife with nearly 10 years of massage training!! 🙂 In all seriousness, there will be a course of action. Whether it be a doctor or getting books, looking at YouTube, the internet. Whatever it takes! 

 

 

Posted by: seserdr1975 | October 15, 2013

When in the Course of My Events

So a few months ago, I woke up rubbed the sleep from my eyes, staggered into the bathroom and washed my face. As I dried up, I looked at the mirror, and I had such a peculiar feeling. In an odd way I didn’t recognize the face looking back at me. Kinda startled me. I had been dealing with the blues during the week. This was first week of July. Both of my Grandparents, on my Moms side died in ’06 and ’07 during this week.

In my 38 years, I have become far more cognizant of how quickly time flies. The one thing I realized was how much I missed my Grandma and Grandpa. They never judged me. I never questioned how much they loved me. I don’t think I ever remember any time that I ever talked to them about my CP. I was never was their disabled Grandson. I was just their Grandson.

If there was one thing in my 38 years that I know, is that being a CP patient, you tend to take solace in your family. Value that support. Value that love.  Once those family members are gone, they’re gone.

 

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