Friday, May 28, 2010


Well, we are up to $5019.00 and it's only been about 24 hours. I don't even know what to say. I truly don't. It is difficult to describe how it feels to, for the first time in 5 years, begin to imagine having a healthy future and growing old with my amazing husband. I had given up on those dreams and figured I would just make the most out of what time I did have. Now I feel like there is real hope for a healthy future, and that feeling is truly indescribable. I plan on spending the rest of my life paying this forward, and it will start with figuring how to get my two incredible aunts who also have MS liberated. It's been a wonderful day. We woke up this morning and went to Chandler's (my oldest) Kindergarten graduation which was absoulutely adorable. They sang a bunch of songs and Chandler did great. Then we took the kids to the park and let them play in celebration of Chan's academic achievement;). It's hard to believe that I am going to have to give up Chandler for a full day of school next year! I will miss him. He is such a great kid and an absolute joy to have around. Even after 16 surgeries, he is the most optimistic, happy, loving, positive kid I have ever known. He teaches me so much. He is SO excited to be a big first grader, mostly because he gets to play on the big playground at recess and, most exciting, eat lunch at school!! haha. Such a cutie. He missed 38 days of school this year because of all of his medical issues, but he still did fantastic. Here he is with his teacher, Mrs. Peterson. Her husband found a job, so she gets to be a stay at home mommy to her little boy next year and I couldn't be more happy for her.

Thursday, May 27, 2010

Our Sister, Toby, Needs Your Donation!

by Toby's Sisters, Andrea Blake Chapman and Brynn Blake Steimle, and Brother, Corey Blake

Our sister, Toby, was diagnosed with Multiple Sclerosis in 2004. She has 4 young children ages 6 and under, and is often debilitated by this terrible disease. She has been on the very long waiting lists in 3 different countries to receive treatment, and she just found out yesterday that one doctor is willing to squeeze her in to one opening he has next month. But that requires her to raise several thousand dollars before next Thursday (June 3, 2010)!

We need your help to make this treatment possible for our sister! Any donation amount would help! Even just $5. If you can donate, please click on the Paypal "Donate" button below. Or to avoid Paypal fees, you can also go into any Wells Fargo branch and say you want to donate to the "Toby Bushman" account and make your donation there.

We thank you from the bottom of our hearts!

(For more information about Toby and the "Liberation Treatment," visit .)

We're Really Doin' it Harry!

I was diagnosed with Multiple Sclerosis when I was 21 years old. I had three lesions on my brain and two on my spine. My first child was a year old. My only hope was that I would be able to raise my own children until they were finished with high school. The thought of having my husband and children take care of me, instead of me taking care of them, has been my biggest fear since my diagnosis. After a couple of years of feeling sorry for myself, and living in fear of waking up blind or crippled, I decided to get healthy, get active, get involved, and stay positive. Now, I look at having MS as a call to enjoy every moment I have; to enjoy each moment that I have with my children, and to do the absolute best I can, while I can. Against the wishes of my neurologist, I have had three more children since my diagnosis, and, though this disease certainly keeps life interesting, I have been richly blessed.

Last November, my Aunt Marcia, who also has MS, sent me an email about a new treatment for MS called the Liberation Treatment. Dr. Zamboni in Italy discovered that 100% of the people he tested with MS had constricted jugular veins and or azygos vein, which was not allowing the blood to flow from the brain to the heart, and causing lesions on the brain! This problem, when fixed with a simple angioplasty procedure, was allowing the blind to see again and the lame to walk! As I watched the story, I wept. I knew that this was big, and I knew that I had to find a way to be tested and treated. The excitement soon wore off when I found that all efforts in this country are being shut down because the liberation treatment hasn't gone through years of trials and studies. I didn't want to give up, though, and after hitting a lot of brick walls, one of my new friends in Canada opened up a door for me to be treated!!! Finally!!! I'm going to Costa Rica to be treated on June 24th, just 4 weeks from now. I can hardly believe it. After failing over and over, the fact that it's really happening just seems so surreal! Honestly, it's really kind of terrifying. I am absolutely dreading leaving my children for seven days, and I'm not sure yet how I'm going to pay for it, but I know it's right, and that's all I need to know I guess. The rest will work out.

I want to thank all of my friends and family for their love and support. One of the most difficult things about this disease is having to ask for help sometimes. I am just so stubborn and want to be able to do everything on my own, but I have been so blessed with many friends and family who are constantly there to help and encourage, and for that I am eternally grateful.
For info on the Liberation Treatment in Costa Rica, visit

Wednesday, May 19, 2010

Back from the Dead!

I'm normally a pretty active person. I love to entertain, and we're always out doing something. We love to take walks, go to the park, go fishing, hiking, jogging, or on a picnic. Graduation week was pretty hectic. I had a few essays, quizzes and a final exam to finish, and I had lots of people coming to visit. I also had an after-graduation open house to plan and at the same time I was trying to deal with Anna and Chandler's medical issues. I felt great through it all. But the day after it was all over and everybody went home, the MS crept in.
This happens quite often with stress. My body seems to be in survival mode and holds up great during the stress. But when the stress is gone, my body seems to shut down. The relapse lasted about two weeks...two very long weeks. I was very dizzy, fatigued, and in a lot of pain. The dizziness is horrible, the pain is no fun, but the fatigue is what makes life excruciatingly difficult. When I'm going through one of those times, I have to ration my energy and be very careful not to over-exert myself. My house suffers, and my kids suffer because mommy just doesn't have the energy to do much, besides the necesseties. Jake suffers because he has to pick up the slack where I simply can't. The poor guy comes home from work, does the laundry, cleans the kitchen, puts the kids to bed, etc. Watching the way that the relapse affects everyone around me is the most difficult part of it all. I might work up the energy to make dinner, but by the end of it, I'm exhausted and don't have the energy to clean it up. I might have the energy to take a shower, but don't have the energy to put cute clothes on, and do my makeup and hair. I have the energy to keep my kids fed, bathed, and clothed, but don't have as much energy to do all the fun things that we normally do. It's incredibly depressing to feel like I'm failing at all of my responsibilities. Jake never, ever complains and only has words of love and encouragement, but I know that doing my job and his is exhausting for him.
Anyway, I woke up one morning last week and I wasn't dizzy anymore!!! But even more exciting, I had my energy back! I was so excited I felt like I was back from the dead! Finally, I had the energy to do my hair and makeup, get the kids bathed and dressed, get my house clean again, and take the kids for a walk and to the park. I took it slow for the first few days because I didn't want to go back to the way I was. But, by now, I'm back to jogging and feeling great. I am so thankful. Having this disease certainly helps me to appreciate the good days. And most days are good.

Sunday, May 16, 2010

Some Questions From my Sister in Law, Kim:
KIM: Is the facility in Albany going to be part of a new clinical trial, or will it treat patients as part of a registry for the Liberation Treatment. I ask because I am sufficiently convinced from listening to the researchers (from the April 14th forum) that a registry should be used in future liberation treatments in order to keep track of prior MS status, treatment for CCSVI, and for post-treatment follow-up and information sharing.
ME: After watching the forum online (, I definitely agree that there needs to be, at the very least, a registry for those being tested and/or treated for CCSVI. I am still waiting for the Dr. to contact me so I will certainly be asking him that question and I'll let you know what he has to say.
KIM: But unlike Dr. Zivadinov, I don't think halting the CCSVI treatments is necessary or reasonable. On the other hand, to have one death out of 30 or so procedures is enough to give me pause concerning your treatment. As far as I can tell, though, that death resulted from the use of a stent, which Dr. Zamboni was adamantly against using compared to the more simple angioplasty.
ME: The dr. that I am planning on being seen by does balloon (angioplasty) as a first option, and a stent as a last resort if the vein is too collapsed. I really hope that he doesn't have to use a stent if I do have CCSVI because, as Dr. Zivadinov as well as Dr. Zamboni have said, we don't know the long term effects of a stent in the jugular vein wall. So this concerns me especially for younger patients such as myself, who will have that mettalic piece of equipment in my vein for a long time. As I understand it, artery walls are much different than vein walls. Artery walls are more muscular in nature, and vein walls are much thinner and fibrous in nature.

Thanks for your questions Kim, and more importantly, thank you for your love and support through this process.

Thursday, May 13, 2010

All about the testing and procedure in Albany

This is from the dr's website in Albany:

Varicose & Spider Veins SclerotherapyUterine Fibroid Embolization (UFE)Cancer Ablation Treatment

Multiple Sclerosis/CCSVI
Our Program
At the present time, we are offering both diagnostic and endovascular treatment for CCSVI (Liberation Treatment) in patients with an established diagnosis of symptomatic multiple sclerosis who reside both within and outside of the Albany, New York area. Doppler ultrasound testing and MR venography are available to diagnose disease in the dominant veins providing outflow from the central nervous system. Based on the findings from these examinations, we can consider patients on an individual basis for endovascular treatment.
Endovascular treatment for CCSVI consists of both angioplasty and stent placement. These procedures are most typically performed from common femoral vein access. First a venogram is performed. This involves placement of a small catheter (approximately the size of a piece of spaghetti) into the vein. This catheter is then advanced into the right and left internal jugular veins as well as the azygous vein. The catheter is advanced using fluoroscopy so that we can watch it as we move it through the venous system into the correct position. While the catheter is in each of those veins, contrast or dye is injected so that images can be obtained. These images will enable us to determine if the veins are patent (open) or if they have a stenosis, which means that a blockage exists within the vein that is potentially compromising the blood flow as it leaves the central nervous system.
If a stenosis is present, we can then move forward with angioplasty for treatment. This involves exchanging the catheter that was used for the venogram for a catheter that has a balloon built into it. Once that balloon is positioned across the narrowed area that was identified on the venogram, the balloon is inflated. This helps to treat the narrowing. The size of the balloon is selected based on the size of the normal vein above or below the narrowed area. Once the angioplasty is performed, another venogram is performed to confirm that the treatment was successful at addressing the stenosis. At this time, stents are being considered when angioplasty results in no change or a worsening of the stenosis that was targeted for treatment. In that case, a stent, which is a “tube” made of metal wires that goes into the vein and holds the vein open, is placed across the stenosis. It is placed in the vein in a manner that is similar to an angioplasty balloon and once the stent is positioned appropriately across the stenosis, it is released into the vein. Patients who receive a stent will typically need to be on anticoagulation medication for at least 3 months.
Like most invasive procedures, there are some risks associated with this procedure. These procedures do use fluoroscopy for guidance, which is a form of low-level diagnostic radiation. The average fluoroscopy time for a venogram is typically <10-15 minutes. Angioplasty may add 5-10 minutes to that total. Based on these fluoroscopy times and based on the fact that different areas of the body are being imaged within that time, the risk of radiation-induced injury as a result to this procedure is almost nonexistent. Any risk, however, will be minimized with careful use of fluoroscopy and with other procedural maneuvers designed to limit exposure. These procedures also require the use of intravenous contrast for visualization of the veins before and after treatment. The contrast used is an iodine-based dye and its use has been associated with both allergic reactions and impaired kidney function after administration. The risk of allergy can be minimized by pre-medicating patients with a history of allergic reactions to contrast, which is why it is important for us to know in advance if this is the case. Evaluating kidney function prior to the procedure, which will be done at our facility, can minimize the risk of impaired kidney function. In addition, only the minimum amount of contrast necessary for performance of the procedure will be used during the procedure.
Venography and venous angioplasty do carry some additional risk. In order to place a catheter into the internal jugular and azygous veins, it has to pass from the inferior vena cava, which is the main vein below the heart, into the superior vena cava, which is the main vein above the heart. As the catheter passes through the heart, it can cause changes in the heart rhythm. That is why patients are monitored during the procedure. This risk can be minimized by carefully observing the catheter as it passes through the heart. Once the catheter is within the internal jugular or azygous vein, it is possible that blood clots can form, which is unusual in this situation. During angioplasty, venous rupture is possible, but that risk should be minimized with careful sizing of the balloon that is used for angioplasty. In Zamboni’s study (59), some patients reported a headache after angioplasty, but this went away spontaneously in all patients. Finally, migration of a stent placed in a patient with CCSVI has been reported. This migrated into the heart and did require an additional procedure to remove the stent. This is felt to be an extremely rare risk of this procedure.
All of these procedures require an observation period of 3 hours before patients are discharged from our facility. If you are traveling to us for these services, we ask that you remain in the area for at least 24 hours if you have been treated with angioplasty or stent placement. Patients who undergo a venogram that reveals no evidence for CCSVI can leave once the 3-hour recovery has been completed.


Yesterday, Albany opened back up for testing AND TREATING of CCSVI!!! I heard this from one of my new friends in Canada. This is now the only place in the US and Canada that I know of that is actually treating!!! I called the Albany Medical Center this morning and gave them all of my demographic information and the dr. is going to call me next week to discuss the procedure and schedule my appointment! WOOOOOOOOOOOOOOOOOOOOOOOHOOOOOOOOOOOOOOOOO!!!!!!!!!!!!!!!!!!! I'm so excited I can hardly contain myself!!! I hope so much that my two aunts can get on the list too and we can go together!!! I don't know if I'll even qualify for the treatment, but I'm sure at least one of us will!! The dr. does not want his phone number being made completely public, but if you want his name and telephone number, email me at and I'll gladly give it to you.
I've already heard from 2 people from Canada and it's really neat to talk to people who actually know what it's like to live with this horrid disease. Oh, and the cost of testing and treatment is $5000.00. This beats the $10,000 plus travel expenses for Poland. $5000 is still $5000, and I don't have it, but by golly I'll figure that part out somehow!!! Me and my aunts need to start having some major yard sales to get our $15,000 plus travel expenses!!!
The dr. in Albany has only done around 20 CCSVI treatments so far (compared to over 300 that they've done in Poland) so of course that worries me a bit, but he's been working on veins for a long time, and has a ton of experience with veins, all of which, from my research, seems to be very impressive. We'll see what happens!! My aunt is on the phone as I type trying to get on the list. Oh this is so exciting I just want to laugh and cry all at once, but I can't because I have a diaper to change and dinner to get on the table:)

Wednesday, May 12, 2010

New at Blogging, so be patient:)

I guess I should start out by introducing myself. I have no idea if anybody will even read this, but I figure it will be a good outlet for me, and if something I post on this blog helps just one person, I will feel like it was worth the effort. My name is Toby Bushman. I am 26 years old and have been married for over 7 years. I have four children, ages 6, 4, 2, and 1 and stay at home with them. When people ask me, "Do you work?" I respond, "Yes, I work my butt off. I'm a stay at home mom." :) I recently graduated with my associate’s degree from Utah Valley University and am transferring to BYU next semester to pursue a Bachelors in Psychology and a Masters in Social Work, all through distance education while my kids are sleeping. It's a lot of work, but it's something I'm passionate about and determined to complete. My husband, Jake, is an air traffic controller for the SLC airport.
I was diagnosed with Multiple Sclerosis on November 4, 2004. Two of my aunts have MS, so when the left side of my body went numb, and I was having neck pain and dizzy spells, I knew I needed to have some MRIs. I have 4 lesions on my brain and 2 on my spine.
MS is a difficult disease to have for many reasons. It is difficult to explain to people how MS affects me. So when I am going through a relapse of symptoms, like I am now, it is very lonely. Seems like nobody understands what it's like to appear normal, and yet struggle silently with overwhelming fatigue, dizziness, weakness, and pain. It is very scary to not know what the future holds for me. My biggest fear is becoming a nuisance to my family...having my husband and children have to feed me or, worse, change my diapers. The thought terrifies me. If I can just make it on my own until my children graduate high school, I will be extremely thankful.
But, for the first time since my diagnosis, I feel hope. The knew research about CCSVI (Chronic cerebro-spinal venous insufficiency) makes so much sense to me, and now it's just a matter of figuring out how to get tested and treated! I first heard about CCSVI when my aunt (who has MS) emailed me this link:
I cried tears of joy that day at the thought of living a life free of this disease. I have tried to be tested here in Utah, and have had some progress, but not much. I tried to get into Stanford, but they are currently not taking patients and waiting for approval for a clinical trial. I've applied to be a part of the trial in Buffalo, NY but even if I do get a call for that, it does not include treatment, just imaging. So, I've decided to pursue going to Poland to have Dr. Simke and Dr. Ludyga treat me. Currently, the wait is until 2012, but I'm hoping they might be able to at least get me in for imaging while I'm in Germany visiting my in laws this December. If you're interested in the Poland route for CCSVI, the place that is doing the Liberation Treatment is called Euromedic, and their official website is The information to register is on this site. If you call the main phone number, it's difficult to find someone who speaks English, but I got a hold of a woman named Marta who is the manager there and she spoke good English. You can reach her at 011 48 692 015 969. You're welcome to email me at if you have any questions or advice for me.
I have never been on any of the traditional treatments for MS, mostly because I've been having babies since I was diagnosed:) But now that I am finished bearing children, I've begun taking LDN (Low Dose Naltrexone), and it has helped me tremendously. Before starting LDN, I was ALWAYS numb somewhere, and now, I am very rarely numb anywhere. Until the past 2 weeks, I have not relapsed in well over a year, and it has been wonderful. If you decide to try LDN, I highly recommend getting it from Skips Pharmacy in Boca Raton, FL. They send it to me every 3 months and Dr. Skip is a pioneer in compounding and researching the drug as it relates to MS. Ok, well I think that's enough for now. I'll be in touch.