A CCSVI Weekend of Hope

Last weekend I went up to the International Society of Neurovascular Diseases (ISNVD) Patient Day in Orlando, FL. This is their 2nd Annual Conference, the first one being in Bologna, Italy last year. The ISNVD is a new consortium of doctors from around the world who are seeking to learn more about the vascular connection between MS and Chronic Cerebro Spinal Venous Insufficiency(CCSVI).

http://isnvd.org/files/ISNVD%20Abstract%20Book.pdf

                                                                 Panel of doctors answering questions 
                                                               from the crowd at the ISNVD conference

If you know me well, you know that CCSVI is the new treatment I had in August 2010, that dramatically improved my MS symptoms and my life. I've also had it another two times since then.

It has been a world wind of activity for me and for the thousands of us who have been helped by this simple angioplasty treatment. Many of our worse and most debilitating symptoms of the terrible disease that we live with each day, MS, have been eased and greatly abated. This has given many of us a whole new lease on life. The CCSVI treatment restores proper blood flow to the body, thus alleviating many of our most annoying MS symptoms such as cog fog, fatigue, balance issues and walking issues.

It has changed my life so much that much of this past 18 months have been spent working with the CCSVI Alliance, a new volunteer organization formed in Feb. 2010 to get the word out about CCSVI. I've been helping in their efforts to bring CCSVI awareness to the over 400,000 people living with MS in the United States.

It all began with my (hair-brained??) idea in October 2010 to have a walk similar to an MS Walk but better. And so I worked with Michelle Brown and other members of the CCSVI Alliance.

We had an educational seminar and the first CCSVI Walk-n-Roll last March in Tampa, FL. on March 4-5, 2010. What a wonderful weekend of education and fun and we were able to raise almost $30,000 for the Alliance to help them spread the news about CCSVI! My procedure and CCSVI had given me a whole new purpose in life. I wanted others to have the same hope that I had felt for the first time in many, many years.

                   

                                            Here is my team, Arslan's Army at the CCSVI Walk-n-Roll

                                       Me and my buddy Michelle~I was so blessed to make this new friend~


I wanted to help MS patients become pro-active about their own health instead of relying on everything their neurologists tell them. Each day there is more and more evidence that MS through CCSVI has a strong vascular connection. I wanted to help MS patients empower themselves to learn more about their disease. And I hope that I have done that through my presence on our CCSVI Florida Facebook page, and through my blog www.faithwalk365.blogspot.com. To learn more about CCSVI, visit the CCSVI Alliance website at http://www.ccsvi.org/.

So, the past two years have been really crazy and exciting for me and a lot of other MS/CCSVI'ers to say the least. The arrival of a computer and internet access in almost every home, plus the surge in popularity of social media, ala Facebook, Twitter and Youtube has enabled MS patients to communicate with each other like never before. Patients have been posting before and after videos showing how they are doing before their CCSVI procedures and after. We are talking to each other in posts, videos and in private messages about what we are going through and what our treating doctors are and aren't doing. We don't need phones, we're communicating like never before. It is a time like no other time in history of self awareness for MS patients.

So what was all the excitement about this past weekend? The discoverer of CCSVI, Italian vascular surgeon, Dr. Paulo Zamboni, crossed the pond and came to the ISNVD event. He spoke and came to the President's Day reception sponsored by BNAC! There were doctors from different fields, researchers, physicists, and scientists and they shared their brilliant minds to include us in part of their medical forum~ at least for a 6 precious hours. They gave lectures and answered questions. They mingle with us, just like regular folks. It was awesome!

                                                  Dr. Paulo Zamboni addresses the enthusiastic audience

                      Neurologists Dr. David Hubbard and Dr.Jack Burks debating some issues

I think it is quite a huge thing for doctors to actually include a group of patients in their inner sanctum. There was a welcome question and answer session. They were actually asking us about our concerns,  and listening, really listening to us. And event like this is totally unprecedented from what I know? What a lively time we had and one of our own, Marsha Mays, represented all of us with this awesome question for neurologist Dr. Jack Burks. Lots of applause on this one. Listen in~

https://www.facebook.com/profile.php?id=1576543520

                                                                  Marsha with Dr. Zamboni

Last weekend was all about HOPE. It was all about seeing people with MS who are moving forward and living their lives with purpose and a positive spirit--instead of heading in the other direction and regressing. It was about meeting new and old friends and connecting with social media friends that we've met online, but never had the pleasure of meeting in person. It was about saying thanks to this growing group of doctors who have given us so much to look forward to for the first time in a long time.

                                                Me and Dr. Arslan with Dr. David Hubbard looking on~

                                             Danielle Rheaume (thinkccsvi.com) and Dr. Kaylee McDonald


It was about seeing us "sick" people actually enjoying ourselves, laughing, smiling and giggling, It was about sharing the excitement of seeing first hand the improvement in the lives of those living with a debilitating chronic progressive disease. It was about hugging and picture taking with our heroes, who are working so very hard to help us get better and feel better. It was about doctors who really "Care" about our quality of life and are trying to help us improve it. It was so much fun~

Jan Norman and Michelle Sciuto enjoy a fun moment

                                             

                                Donna Romano, Dr. Mike Dake and Cindi Murrah (the Dake groupies!)

                                                 New CCSVI Board Member Christine Righeimer and family


For the first time in many years, MS patients now have hope. And that is something every human being needs to have. It is a God-given right that we need to hang onto with everything in us.

There are a couple of Bible verses that I have prayed for years in relation to my healing from MS over these past 14 years since my official diagnosis.

Romans 12:12 says "Be joyful in hope, patient in affliction, faithful in prayer." Another powerful verse is from Romans 15:13  "May the God of hope fill you with all joy and peace as you trust in him, so that you may overflow with hope by the power of the Holy Spirit." I claimed these verses as my own in anticipation of my healing, knowing that my God would come through in His perfect time. And of course He did, through a compassionate and brilliant man who had a wife also suffering with MS, a doctor named Paulo Zamboni. 

For me, Dr. Zamboni and his discovery of CCSVI is simply an answered prayer from the God of the Universe. Dr. Zamboni is a man of science, and as such it is up to science to prove that his theory is valid, but for me, seeing the faces of happiness and joy on the patients of those who have suffered for so long is proof enough for me.


I say a big thank you and God Bless you Dr. Zamboni! Continued thanks to you and all your colleagues who continue to work so vigorously on our behalf. We will never forget your dedication. You have changed our lives forever.

                                              Me and Dr. Zamboni! Darn I wish that picture wasn't blurred!

My verses for today are above in red.


My prayer for today:

Dear Heavenly Father:

Thank you Lord for Dr. Zamboni. Thank you for guiding his research and thank you for his discovery of CCSVI. Thank you for all the doctors who are continuing to work on our behalf, learning more each day about the vascular connection between CCSVI and MS. Thank you for all the wonderful new friends that I have met who have enriched my life so much these past 18 months. Thank you Lord. Please continue to be with their physicians, scientists and researchers as they continue to learn more about CCSVI so that more and more people may be healed.


In Jesus Name I pray,
Amen

Blessed Assurance - Jesus is mine!

If you read my last post, you know that we lost my Dad last Thursday. He passed only 69 days after Mom.

It's only been 5 days, but it's been an interesting 5 days to say the least. I've had a few times of overwhelming grief and crying, and then I've had a some great times of laughter remembering some of the silly things that Pop did, that were almost his trademark. My Dad was one of a kind, no doubt about it, I've never known anyone like him and probably never will. Boy, was I ever blessed to have this man as my guiding light for so many of my formative years.

                                                    Mom and Dad at Dad's surprise 60th birthday party~

The grieving process is different for all of us. While I was sad for a brief time, now I am deliriously happy knowing that my Dad is home and joyous gain. He's healthy and whole again and has two brand new eyes. All of his aches and pains are gone. His numbness from his diabetic neuropathy is no where to be found. He's singing in the Heavenly Choir. His earthly shell is gone, but his soul is rejoicing in Heaven while he is sitting at the feet of Jesus!

Many of you may be thinking at this point, how in the world can she possibly be happy after her Dad passed away not even a week ago? There is one big reason for that, and that's all. I am happy and peaceful because I know exactly where my Dad is. I'm not worried about whether he was good enough or did enough nice things for other people, because that has nothing to do with where he spends eternity and where he is right now. Those are superficial things made up by legalistic man and our need to try to control our eternal destiny. I am not a religious person and my Dad did not have a religious bone in his body. Praise the Lord!

I know that my Dad knew Jesus Christ as his Savior and accepted Him and His gift of Salvation years ago. I know that he is with Jesus right now. That is one of God's promises. If you accept His son and His gift of Salvation, you will spend eternity with Him in Heaven. And that is where Dad is right now - there is absolutely NO doubt in my mind whatsoever.

                                            God's Word is full of His Promises~ Pick up your Bible and read!


Where you spend eternity has nothing to do with how good you are, or how nice you are or how you treat other people, although those things are all Fruits of the Spirit, and you will receive them when you accept Jesus as your Savior. Once you are saved, Jesus changes your heart and your life forever.

The religions of the world force their members to follows many rules, teaching them that their salvation depends on them abiding by the rules set before them by their church. They might not go to Heaven, if they don't measure up by doing a thousand different things they are told to do. Hogwash I say!!!

What a terrible and frightening way that is to live your life! To have that lingering doubt hanging over you all the time? Am I good enough? Did I do enough, Did I give enough? It's like you are always performing for God. You are always trying to reach an ever higher expectation. The ladder keeps getting moved to a newer level and you can never the next rung. It's never good enough and it never will be. We are sinners, every single one of us and the only thing that saves us is the blood Jesus shed for us at Calvary.

                                  The difference between religion and a relationship with Jesus are obvious~

Many religious folks think they have to go to church every week or they might not make it to their eternal home. They have to teach Sunday school or they might not make it. They have to give all all their energy and time to the church or God won't open the pearly gates for them. More and more and more and more. It never ends. I have to do this or I might not go to Heaven, I have to do that or I might not go to Heaven. I know I could never live in that fear every day. It would be exhausting.

I think a lot of people just don't get the difference between religion and having an personal, intimate relationship with your Savior, Jesus Christ. But here it is in plain language, so everyone can understand.

Jesus is not about religion. Jesus wants to commune with you. God formed you in your mother's womb, and He wants to have an intimate and personal relationship with you. Psalm 139:14 says "I praise you because I am fearfully and wonderfully made; your works are wonderful, I know that full well." He knows every hair on your head, every thought in your mind, every concern you ever had, past, present and future! Luke 12:7 says "Why, even the hairs of your head are all numbered. Fear not; you are of more value than many sparrows."

                                       Having a Relationship with Jesus Christ is NOT Religion!

You CAN'T earn your way into Heaven. Your soul was bought with a price. Your soul and eternal destiny were bought by the blood of Jesus Christ. He came to this earth to die for you and me and all of our sins. It's that simple. NOTHING you can do, can ever change that. NOTHING you can do, can ever better that, because it has NOTHING to do with you! It has everything to do with Jesus! Ephesians 2:8 tells us very clearly: "For it is by grace you have been saved, through faith--and this not from yourselves, it is the gift of God."


Are you listening? We are saved by God's Grace. It has nothing to do with you or anything you ever do or don't do. Aside from accepting Jesus and his gift of Salvation, there is nothing you can ever do to earn a place in Heaven. And really, when you think about it doesn't that make perfect sense? Why would any of us ever think we could do anything to improve upon God's perfect gift of his son, Jesus Christ and His plan of Salvation. Do we actually think we could ever do anything that could make that perfect gift of God's grace any better?


So, if you're looking for a Valentine this year, make Jesus Christ your Valentine! Invite Him into your life. Confess your sins, turn from your former life and He will give you a brand new life in Him. He will be your forever Valentine and He will never leave your side until you take your last breath to go home to be with Him in eternity. Now, that is Blessed Assurance! Matthew 28:20 says "And surely I am with you always, to the very end of the age.”

My verses for today are above in red.

My prayer for today:

Dear Lord God Almighty:

Thank you Lord for this day. Thank you Lord for the life of my father. Thank you Lord that I know exactly where he is right now and have the Blessed Assurance that he is sitting at your feet right now. Lord, help others who do not know you to accept your amazing gift of eternity through your son Jesus Christ. Use me Lord as a vessel for you. Help me to be able to reach out to my family and friends so that they can see you and your love through me. Watch over everyone I love and give them your peace that surpasses all understanding. 

In Jesus Name I pray

Amen and Amen

Dad's lasting legacy of Faith and Family~

My beloved Pop passed away last night. He had been slowly fading away, getting weaker and weaker with illness after illness. It's been only 69 days since my Mom passed, but for Pop I'm sure it must have seemed like an eternity and he wanted to go home to be with Jesus and with her. It was clear to all of us that when Mom passed on, a huge part of Pop went with her. They were pretty much inseparable since they were married in 1947. So now, they are dancing together in Heaven~ What a comfort that it is me and my family. Mom with her new legs and Pop with 2 brand new eyes! I'm sure they are "cutting a rug" up there, as the saying goes.

                                                                        My handsome Dad in 1947
 

                                                                 Dad and his sister Nicki, circa 1943

Surely, Mom and Dad are dancing the night way up there in Heaven!

                                                   
They were together for an incredible 64 1/2 years! I'm sure Mom and Dad had they had their ups and downs, like any married couple, but they were loyal and devoted to each other for each and every day that they were together. What a wonderful example they set for us kids~When you say your vows, you mean them. It's easy to walk away, but they never did. When the going got tough and I'm sure it did, they stayed in for the fight. They hung in there till death do us part, the way it should be. I so admire both of them for that.

                                                                  Mom and Dad - Summer 2005

                                       
I'm happy to say that I got my strong faith in the Lord from my Dad, pure and simple. He accepted Jesus Christ as his Savior when I was a young woman and it had a huge impact on him and on us as a family. We never went to church as a family. Dad was never comfortable in a church setting, but we read the Bible as a family daily and we listened to a powerful radio preacher Reverand Robert Thieme out of Houston. TX.

We would listen on Sunday mornings and Pop always bought some of the video cassettes for us to listen to at our leisure, although admittedly it was him listening to them most of the time in his spare time. We would read scriptures and ask questions. In many ways at the time, I thought I'd much rather be doing other things, being a young lady with lots of activities and "boys" on her mind, but my Dad was adamant in his new beliefs and would not let up on any of us.

Now as I look back, of course, I'm grateful to him that he was so devoted to his new faith because he grounded me in my love of Jesus that has been the foundation of my entire life.So, thank you Pop. My love of Jesus came directly from you and I have lived a very blessed life because of it.

                                         I learned about Jesus and his love from my Dad early in my life~


His family has been everything in the world to my Dad. He has totally devoted his entire life, aside from his work, to spending time with his family. He was always there for us. Pop didn't have an easy childhood. His own father deserted the family when Pop was little, and he was raised by his Mom, his Aunt June and his Grandmother. I think once he got his own family, Dad was determined to spend as much time as he could with them. That's exactly what he did, and we were all very blessed by that.

If he wasn't working, he was home with us, working around the house, repairing something, building something, fixing something or listening to his HAMM radio in the basement. We did everything as a family. He took us to work on his Grandfather's house, painting it one summer together and he took us to the cemetery to visit his Grandmother's grave. He and I helped my brother deliver his morning newspaper route an afterwards we all went to Dunkin Donuts afterward and he let me get my favorite, which was always toasted coconut. He did everything with us. He included us in everything. In many ways, he was like our best friend~

I remember as a kid, Pop helping me with many school projects, watching me swan dive off the steps in our living room, applauding me after I played piano, playing croquet in the back yard with us, or sitting around the kitchen table just talking. He brought his Grandfather Victor Beagle over for dinner on Sunday's and made us listen intently as our 95 year old Great Grandfather murdered the violin! But we sat there at attention in our living room, listening to each out of tune note and clapped and whistling to give Grandpa Beagle our thunderous approval. Pop wanted us to learn life's lessons from the older generation. He would take me with him when we went to visit his Grandpa in the home he was living in in Fredericksburg, Va. Boring I thought at the time, but again he was teaching me about the value of my elders.

Grandpa Beagle on one of his many visits to our house in 1965!

Pop made us homemade ice cream, homemade root beer, walked in the snow to the 7-11 store with us, took me and my cousin for ride in his big truck to "go on a diet" as we called it we went to get soft ice cream before we started the next diet on Monday morning. He helped me write the invocation for my High School Graduation, where Vice President Gerald R. Ford was speaking. Of course, there are a thousand other things that any loving Dad does for their children and my Pop was no different. A staunch disciplinarian, but a quirky jokester, you never knew what to expect from Dad next.

He loved to sing his crazy songs, say his rhythmic nutty sayings that only he could remember from day to day and year to year. He would just break out in some saying or song that nobody ever heard of and know every single line and verse. I saw him do it with me, my brothers, then his grandchildren and great grandchildren over and over again. Sometimes I would just look at him and say" OK Pop, where the heck did that one come from, I've never heard that one before in my life?" He would just smile and give me a chuckle. He enjoyed his family immensely, and they were everything in the world to him right down to every last great grandchild. He loved us all.

Pop playing the organ with our son Eric(Biff) in 1988.

I saw him do this with each succeeding grandchild and even great grandchildren! 

Mom and Dad visiting family in Virginia in 1992.

Me and Pop in 1995

Pop was a great puzzle solver, game player, coin and stamp collector and interested in a million different things. He was always been quick to smile and very slow to anger. Pop was always a very hard worker and a great provider for his family and while we weren't rich, but we never wanted for the things that really matter in life like the love and devotion of our loving parents.

When we were friends with the man that brought my Dad to Christ, Louis Fritz, Pop would bring home animals from their farm to our small city lot in the suburbs of Alexandria. We had chickens, baby ducks, rabbits, and even a goat eating the laundry off the line. It was lively, to say the least! I can only imagine what the neighbors were saying back then~ Pop also took us out there to work on their farm, not something I was crazy about at the time, but now when I look back those were some of the most wonderful memories from my childhood. I think Pop was always a frustrated farmer at heart.

                                  Mom drew the line when the goat started eating the laundry off the line~~
                                                                    The goat had to go back!

We were so happy to have Mom and Dad's 50th Surprise Wedding Anniversary at Mike and Linda's house in 1997. We had family come from near and far, and it was so much fun. I know it was exciting for them and for us too and we created some great memories for years to come. We were also able to get together for their 60th. How lucky were we?

                                    Family gathered for Mom and Dad's 50th Anniversary in 1997
                           some of the kids took off before the pic was taken but most of us were there for it!

My brothers I'm sure, have lots of fun memories of Dad. We were 6 years apart in the birth order, so in many ways, we each had our own childhood with our own memories of Mom and Pop. But all of our memories I'm sure come back to Pop's strong faith in Jesus Christ and his love of his wife and his family.

They and their families have been fortunate to have Mom and Dad close during these past 15 years because my folks built a house and moved to Milton, TN., to be closer to Robert and his growing family. Mike and Linda ended up moving up there a few years later and the rest of the family followed. Only me and my family remained in Florida. Thankfully they have all been able to share their lives with Mom and Dad during their golden years and boy did that make my parents happy :) I was able to make quite a few visits which were wonderful times that I'll always remember.

I've been so blessed to have Dad in my life for so many years. I can remember when I was going through my health crisis back in late 1997. The doctors didn't know what I had. I was being passed like around like a hot potato from doctor to doctor in Sarasota, having every test known to man.

It was my strong faith in the Lord that got me through that ordeal. I couldn't have done it without Jesus and His love, He never left my side. I learned that from my father. Pop said to my husband Steve, a new Christian who was understandingly struggling with this horrible situation before him~ "Steve, you need to get on your knees and thank God for your many blessings and for your Salvation. Don't worry about this thing with Nick. He made her, you don't think He can take care of a little problem like this?" So simple, but so true. And, of course, my Dad was right on the mark. I didn't have brain cancer like the doctors thought I had, I had MS.

One of Dad's favorite verses in the Bible was from Ecclesiastes 12:13 "Now all has been heard; here is the conclusion of the matter: Fear God and keep his commandments, for this is the whole [duty] of man." Pop used to say to me, take this verse and hold it close to your heart. When all else falls away, this is what is important.

In reading my Bible and praying about Pop yesterday, I came across some other verses that I think Dad lived his life by each day in Colossians 3:12-19

"Therefore, as God’s chosen people, holy and dearly loved, clothe yourselves with compassion, kindness, humility, gentleness and patience.  Bear with each other and forgive one another if any of you has a grievance against someone. Forgive as the Lord forgave you.  And over all these virtues put on love, which binds them all together in perfect unity.

Let the peace of Christ rule in your hearts, since as members of one body you were called to peace. And be thankful. Let the message of Christ dwell among you richly as you teach and admonish one another with all wisdom through psalms, hymns, and songs from the Spirit, singing to God with gratitude in your hearts. And whatever you do, whether in word or deed, do it all in the name of the Lord Jesus, giving thanks to God the Father through him."


My Dad was a great man. He was one of the good guys. I'll love you forever, Daddy. Thanks for being there for me for so many, many years in so many, many ways. Thanks for a wonderful childhood with unforgettable memories. You were the best.

                                                                    The original Beagle Family at 
                                                        Mom's 80th Birthday in S.C. at Robert's house  

My verses for today are above in red.


My prayer for today:'


Dear Heavenly Father:


Thank you so much for the life of my wonderful Father. He was such a good man. I am so grateful for so many things he did for me in my life, but especially for instilling in me my love of you Lord Jesus. I know that he is know out of pain and is dancing in Heaven with Mom. He is reuniting with so many loved ones who have passed before him and he is sitting at the feet of Jesus, rejoicing in his new home. Watch over him and Mom until we can meet with them and you in our own glorious reunion. 


In Jesus Name I pray,
Amen