It was so nice to have Angeli Vanlaanen, a professional skier from Utah, in Boston to show her documentary about her recovery from Lyme disease. She is by far one of the sweetest people I have ever met and we were so happy to be able to host her for a night at our house due to an issue with her hotel reservation. Before she arrived, I told Rylan that we were having someone very special staying with us and we sat and watched videos of her skiing off cliffs and mastering “cool tricks” on the half pipe. He was SO impressed and waited by the window until she arrived. As soon as she walked in, Rylan was all over her. He showed her to her room and gave her the picture he drew of her skiing and then the two of them settled on two bar stools in the kitchen where Rylan asked Angeli to draw three things for him. He drew three lines and said, I want you to draw what you do for work, a picture of your house, A N D…..how much money you make! Ha! I tried to explain to him that it wasn’t polite to ask people how much money they made and he replied, why??? I have LOTS of money in my piggy bank! Do you think she has more than me because I have A LOT of money! Angeli was so wonderful with the kids and it was really nice to have someone to talk to that was as sick as I once was and was doing SO well and looked so incredibly healthy. I mean, the girl is now training for the Olympics! That’s incredible!
We had a small gathering at the Spaulding Rehabilitation Hospital in Charlestown where we showed her documentary, LymeLight – The Story of Professional Freeskier Angeli VanLaanen Living With Lyme Disease. If you haven’t seen it already, please click on the link above. It’s a very short, 30 minute documentary. I think it’s amazing that she has chosen to spread awareness about this disease through her documentary and several interviews. You can read more about her on the Team USA website HERE.
Pictures from the event:
I’m so happy where things are going with our group. There are so many great things happening that I will share with all of you soon and we are hoping to have Angeli come back next year to help with our efforts!
Dr. Shea, Neuropsychologist and president of ILADS recently spoke to our support group about Neuropsychology and Lyme Disease. A must see! Here is the video from his presentation:
State Representative Theodore Speliotis will be sponsoring a Lyme Disease Awareness Day at the State House in Boston on Monday, April 29th at 11:00am – 3:00pm. S.L.A.M, the Lyme Awareness of Cape Cod and the Boston Lyme Group will be hosting.
This is an educational event for politicians, doctors and patients. More details will follow.
In the meantime, I am creating a Wall of Hope that will be publicly displayed during the event. If you live in Massachusetts and would like to participate, please email your picture with name, town and county that you live in to email@example.com.
We are happy to have Dr. Leo Shea speak to our group this Saturday, March 2nd at 1:00pm – 2:00pm. Our support group will meet afterwards from 2:00 – 3:00pm.
Dr. Leo Shea is currently the president of ILADS (International Lyme and Associated Disease Society). His expertise is in neuropsychology which includes traumatic brain injury, tick-borne, autoimmune and chronic disease and stroke. He will be talking about “Understanding the Neuropsychological Consequences of Lyme Disease”.
LOCATION: Cambridge Spaulding Rehab Center – 1575 Cambridge St., Cambridge, MA – Chapel Conference Room, 3rd Floor
There is visitor parking located by the side entrance.
I hope to see some of you there!
The Boston Lyme Group is very pleased to announce that our February speaker will be Dr. Kenneth Liegner from Pawling, NY. The event details are as follows:
Spaulding Hospital Cambridge
Chapel Hill Conference Room
February 2, 2013 at 1pm
We will be sending out a flyer soon, but we thought to at least get a SAVE THE DATE email sent first.
Brandi and James
We are so pleased to have Dr. Phuli Cohan speaking to our group about detoxing. She had suffered with Lyme for several years and is a “Lyme Warrior”, a name given to those treated by a well-known LLMD in Washington, DC. She is now well and has been off antibiotics for over a year. Please join us!
SATURDAY, JANUARY 5:
Location: The Cambridge Spaulding Rehab Center – The Chapel Conference Room – 1575 Cambridge St., Cambridge. (Close to Harvard T stop. Limited visiting parking available).
Time: 1:00pm – 3:00pm. (First hour is educational. Second hour is for support)
Email me at firstname.lastname@example.org for more information.
It’s been a little over a year since I have been blogging and so much has changed since my very first post in October of 2011. I have met so many people, many who have become good friends because of this disease. The support group James and I started a year ago has turned into something very special and extraordinary. We are helping others by supporting them through their illnesses. As I sat with twenty or so people on Saturday, listening to every one tell their story about their struggles with getting a diagnosis and then finally trying to come to terms with their final diagnosis…Lyme, I thought how lucky are we to have finally found a place to come together and share…and learn from each other. As I looked around the room, I saw the evidence of Lyme everywhere. Walking sticks, leg braces, dark circles under the eyes for some…tears. A year ago, I had no idea that there were people out there that were suffering so badly from Lyme of all things. I thought Lyme was just a flu-like illness that was easily treated by antibiotics. I think of a woman who was missing from our meeting on Saturday and the heart-ache she is feeling after watching her son’s health deteriorate rapidly before her eyes. She is desperate to find someone who can get him well…and I am only more motivated to make a difference…for the people in that room and for the grieving mother who wants her son to live a normal, healthy, happy life. No one should ever have to go through this.
My hope is that our group is somehow able to make a difference in how doctors diagnose and treat patients with Lyme. Now that we have two wonderful doctors on board with us, I feel stronger than ever. Our first speaker will be Dr. Kenneth Liegner, a well-known ILADs MD who has been treating patients with Lyme since the 80s and is also responsible for getting two of my friends well. We are inviting primary care physicians in the Boston area to attend and I really hope that some of them come.
There have been times where I have thought about closing down this account and moving on…leaving Lyme far, far behind but I feel like I have been called to continue this journey until the medical guidelines for treating Lyme are changed and until more awareness is brought to the medical community so that people are diagnosed soon after an infection to avoid years of suffering. So, here’s to making a difference and if any of you would like to join me, feel free to attend our meetings and ask how you can get involved.