Hello and Sorry

I know everyone was looking forward to a March show but unfortunately, I fell ill and was in the hospital. Let me tell you, there's no bigger upset between having to cancel my show and spending my 48th birthday in the hospital. I do appreciate all the well wishes on facebook and the friends and relatives who brought me presents, balloons, flowers and a cake. Anyway, spring break is almost here and you are probably wondering what to do with your child.

I am sending my 9 year old to the boys and girls club so you may want to see if they have one close to you. It's a great organization, he can play basketball, swim and even play video games. During school days they are open 3-8 M-F 10-5 Saturday. On school days off they are open 10-4 M-F. If you dont have one, how about the local Y or a rec center? Many of them, the Y especially has a sliding fee scale. I'm even going to go to the Y with him for swimming because its a great workout and ours has a chair to get me in and out of the water.

Do a google search for activities, get them involved in helping in the kitchen. When I think of other specifics I'll post them here. I'm also still looking for people for my April 28th show. Email me I'd love to hear your thoughts and ideas.

MSLOL Radio Multiple Sclerosis Life of Learning... 9/27/2010 - RaeFlectionsMe Radio | Internet Radio | Blog Talk Radio

MSLOL Radio Multiple Sclerosis Life of Learning... 9/27/2010 - RaeFlectionsMe Radio Internet Radio Blog Talk Radio

Wont you join me?

MS Awareness week is over for 2011 but it is still officially MS Awareness month. And its time for another Parenting with MS show on http://raeflections.me/ Thursday, March 24 froim 8-10 pm ET. This month, we will not only salute parents with MS but from 8-9 we will talk to children of parents with MS so get ready for some wonderful conversation. You can either call in live at 714)510-3712 & press 1 to talk or email me at bowmanmktg@yahoo.com or IM me on facebook at Taunia Derenberger. We welcome children, grandchildren, nephews, neices, etc. Our second hour, we will be talking to and honoring parents with MS. Parenting these days is hard enough but through Multiple Sclerosis in the mix? If you are a parent or grandparent with MS and have a question or comment please call 714)510-3712 & press 1 to talk between 9 pm to 10 pm ET.

Public Policy Conference 2011

 OK, I love advocacy work and the National MS Society so when I can combine the two…all the better. This year I once again attended the Public Policy Conference in Washington, DC. It started from home Monday, March 7 at 6 am waking up my 9 year old for school. After dropping him off late, we had a hard time getting him moving, we hit the highway.  We got to the hotel, Hilton Mark in Alexandria by 5:30; got all checked in and while I missed the health care update and the CDMRP (Congressionally Directed Medical Research Project) briefing but that’s ok because we advocated last year for the CDMRP the only change was we were asking for more money. I barely made the welcome reception but I was tired.

After getting to sleep at 2 am, I had a 6 am wake up call to be at a breakfast for Government Relations Committee Chairs. Yes I do it all, state advocate, federal advocate, local walk manager, support group coordinator but I digress. Anyway, at the GRC breakfast we discussed health care issues and split into regions to discuss what we are doing in our chapters. After that were the briefings on the other two issues.

One of the issues we took to the hill was introduced in the house and senate Monday, March 7. It is HB 883/S495 The Adult Achievement Center Enhancement Act. It allows for funds to survey for Adult Achievement centers. Most of the current adult centers cater to an older population (65+) with Alzheimer’s, Parkinson’s, etc. and MS is showing to be a younger persons (ages 20-50) disease. These achievement centers would have physical therapists, occupational therapy, speech therapy, RN’s, social workers, nutritionists, etc. a whole team of people to treat the whole person. They also cover maintenance not only on the person but on their equipment such as wheelchairs. Insurances don’t cover these usually. There are successful centers in Seattle, Minnesota, New York and one other one. There would be government grants that could be applied for either by for profit (such as hospitals) or non profit agencies to start these $28 million over 5 years, $1, $3, $6, $8 and $10 million.

The other thing was to find someone in the house to back a bill for Access to Neurological Care. We request that Congress support legislation that would allow neurologists to qualify for Medicare payment incentives, in order to improve access to these providers for people living with multiple sclerosis (MS). This legislation will correct an omission in the Patient Protection and Affordable Care Act (H.R. 3590), which led to the exclusion of neurology from the list of specialties eligible to receive the Medicare payment incentives. A bill to change this provision will be introduced by Sen. Amy Klobuchar (D-MN) and cosponsored by Sen. Susan Collins (R-ME).

MS is an unpredictable, often disabling disease of the central nervous system, which

interrupts the flow of information both within the brain, and between the brain and

body. Symptoms range from numbness and tingling to blindness and paralysis.

Due to the complex and unpredictable nature of the disease, many people with MS

depend on neurologists to coordinate their care and and act as their primary care

physicians throughout their life. In order to ensure that individuals have appropriate access to primary care physicians, the Patient Protection and Affordable Care Act included a specific provision to attract more physicians to primary care specialties as increased demand

is expected. Specifically, the Patient Protection and Affordable Care Act provides a

bonus to physicians who: (i) specialize in family medicine, internal medicine, geriatric

medicine; pediatric medicine and (ii) have allowed charges for evaluation and

management services that account for at least 60 percent of the physician’s or

practitioner’s total allowed charges. Most neurology practices are heavily focused on patient evaluation, management and coordination of care for those living with neurological conditions, like MS.

Well, Wednesday was the long day on the hill but for us and many that we talked to during the day, it was a successful day. I also spoke as a mother on the cancellation of our local high school NJROTC program and invited our congress people and senators to attend a local rally, as well as our May 1 walk MS. I urge everyone to call or write your congress people and senators about the above bills and urge them to join the MS Caucus if they have not already done so.

Parenting with MS

This isnt very good but it was originally written at 3 am on a Blackberry

I tried, I love you
I though I did my best
But its not easy being a parent with MS
I joined in where I could
And I thought you understood
I tried to explain this thing to you
And I thought my best as a parent I tried to do
I tried, I love you, I thought I did my best
But its not easy being a parent with MS
I hated not being able to run and play
And that in bed many times I did stay
That this thing zapped my energy
That I struggled with my own identity
As a person, a wife and a mother
How I wished it had happened to another
I tried, I love you, I did my best
But its not easy being a parent with MS
We both got handed a raw deal
But how do you think I feel
While I'll never again run, dance or swing
Being stuck in this wheelchair thing
You have no idea how I'd like to run beside you
But then again I know you'd like to run with me too
 (Chorus)
I know its hard having to hang out at home and help more
You want to play or hang out with friends not do an extra chore
I didn't always feel well enough to cook or clean
I didn't always feel like going out or being seen
(Chorus)
I didn't always make the right choice
And many times you think I ignored your voice
I tried to listen to your hopes and fears
I tried to be there to dry your tears
Just know that above all
I'll pick you up when you fall
(Chorus)
You're forever my child and no matter what I love you Intentionally hurt you I would never do
I know many times I'm tired or stressed
But I think I try to do my best
If I could change this  I certainly would
To go through what you have, no child should
(Chorus)
Everyday, for you I thank the Lord above
For giving me you, to show you love
I know I'm far from the perfect mother
I can't blame you if you want another
We cannot see or understand
Why this was part of Gods plan
(Chorus)
In time we may understand, we may see
Why this happened, why this was to be
But for now these are the cards we were dealt
An awful hand but you needed to hear how I felt
I loved you before, now and always will

2011 HAPPY NEW YEAR

Ok, As 2011 begins (I know where did the last year go?) There are many things on the horizon for the world of MS. And activists like me will continue to fight for funding for programs to benefit us to someday reach a world free of MS. In the meantime I'd love for you to join my facebook page (Taunia Derenberger) and join me on my debut internet radio show on parenting with MS check out http://RaeFlections.Me/!!!!!! Let's all vow to have a great 2011 and lean on each other.