ICAMA would like to welcome Jeanne Townsend to our ICAMA community as Director of Patient Outreach and Support. As such, she will help to provide support and education to ICAMA patients and their family members. These services will be extended to non-patients as well.
It is our hope that as ICAMA continues to grow, we may increase our ability to support our patients and the IC community with knowledge and education to fullfill each person's needs on the road to his or her individual wellness.
The following is a letter from Director Jeanne Townsend introducing herself to each of you and inviting you to illuminate her on how she can best begin in helping each of you!
Matia Brizman, Ph.D.
ICAMA
Interstitial Cystitis Alternative Medical Association
Interstital Cystitis or Pelvic Pain Syndrome can present many challenges for those who suffer from it, along with their family and friends. Under the care of Dr. Matia Brizman you have already made an important step on your road to recovery. My name is Jeanne Townsend and I am an IC patient. I have been working with Matia for over Five years and can happily say that I have had no significant bladder symptoms for many years.
During my own experience, there were times when I was confused, lonely, scared, and depressed. No one really knew what I was going through. My time with Matia was sometimes the only reassurance that I would have some kind of normal life. Because of this experience and knowing that I could have benefited greatly from more support during my treatment, I have decided to try and help other IC patients. I plan on working closely with Matia and will be offering support workshops for the special needs of IC patients and their families.
I am conducting this survey to see if there is interest and what topics you would like to see covered in a two and a half hour workshop environment. Family and friends are welcome to attend. There will be a fee of $80.00 per person per workshop.
The environment will be comfortable and IC friendly. You can sit, lie down, get up and walk around etc. There will be others like you on their own recovery journey. We will share and have community in a positive and supportive setting.
I am going to list some potential workshop ideas. I would love your feedback and responses so that I can create an effective and interesting support experience.
Please click here to fill out the survey.
Diet
- What is it and why.
- How to make iT work for me
- Food quality
- Shopping
- Ideas and shortcuts
- Recipes
- Dining out
- Meal planning
Pain and stress reduction
- Meditation
- Visualization
- Supportive techniques and strategies
Sex
- Communication and creativity
Psychological
- Coping strategies
- Communication
- Professional considerations
- Guest Professional speaker
Gentle Movement
- For patients with Matia’s Approval
- Yoga
- IC specific exercise
Healthy Home
- How to create a healthier home
- Safe Cleaning supplies
- Water, Paints, Etc
Healthy Beauty
- Gentle skincare
- Cosmetics
- Create a home spa
Art
- Creativity in a supportive environment
Please click here to fill out the survey.
These are just a few ideas. Thank you for your time in responding to this survey!
Comments
Skype
I couldn't fill out the survey. I think this all sounds great. I only wish that I lived there to participate. Have you ever considered using Skype so that it would open the workshops up to those of us who live far away? I also thought that it might be nice for appointments too.
Kriste
long distance patients
I have to agree that it would be nice if there was a way we could all partake in this. I think Matia it would be great if we could add a chat service to this and open it up for meetings and possibly a online support group once a month. There are lots of chat clients you can do and your IT guy should be able to add that easily to your website. I think you could even open it for your classes as an option.
Nicole
We have just added voip
We have just added voip calling via Gizmo5 (similar to Skype, different protocol) that will allow users to call for free from their computer for appointments. Download the application at http://gizmo5.com. Our username is boma_icama.
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getting started?
This is great when is this program going to start? I sure could use the support.
Gizmo5
Oh this Gizmo5 is cool I just downloaded it. You can use it on your comuter to send files have a whole group of people talking at the same time. if you have a mic you can use voice and as well as a web cam looks like fun. I am npelosi in there if anyone wants to add me as a friend we can talk. I don't have a mic or a cam yet but I am going to get one. You know this would be a great way to have consults via web cam so we could actually see eachother and get more of a feeling of how one is doing.
I am also with Kriste
I think this is a nice idea and something that will help patients tremendously. I personally have been frustrated at times because in the 1/2 hour appointments, there is just not enough time to cover all the questions I have and I think a lot of my questions could be covered in a seminar like this. I only live in San Diego, but I work and have 2 kids so it is not easy to take time out of my schedule to come up for a seminar. I like all of the topic ideas and would love to gain more insight into these topics. I strongly urge/request that a packet with this information be made available to all of Matia's patients. Her dissertation is wonderful, but not really written for the layman. A packet with information from the seminar would be amazing. I need to read things as that is the type of learner I am and then my family could read it to.
Great Idea
I think this is a great idea and agree with the others that it would be nice if long-distance patients could be somehow included. At this moment when I click to fill out the survey it just comes back with "The page you requested does not exist'.
Reply to All
We will definitely INCLUDE long distance people! We put the survey out to see who is interested. SO, however we need to accomodate everyone, we will!
Glitch
I was not able to complete survey from here. When I clicked on Bomamed Chinese Medicine and Accupuncture to the left and go to tis same blog then I was able to fill out survey. Must be a glitch.
Kriste
Kristie
I forwarded this to my tech person who will fix it!
Credentials?
I am just curious, What are Jeannie Townsend's credentials? Is she just a long time patient or is she a practitioner?
JEanne Townsend
Jeanne is simply a very long term patient with trememdous personal skills with a wealth of experience in life and sickness. She is also a mature woman which gives her a nice depth. She will simply be teaching concepts that I have taught her. She is acting as an extension of me and of ICAMA. All of these classes are non-medical classes and therefore do not require any kind of degree, but rather an ability to reach people on a personal level, which , she does really nicely.
Jeannie Townsend
I think that this is a wonderful addition to Matia and bomamed. This will offer an even better service to us out there that are trying to deal with our IC. This just cements my decision even further that beginning treatment with Matia will be beneficial.
WHEN ARE WE STARTING?
when are we going to start this? I really need some support more then i am getting here. I have tried to get others to join me in the Gizmo 5 but so far that has been a failure.
An answer for Nicole
Hi NIcole. In answer to your question, we are still evaluating the survey responses to see if enough people are interested in attending a workshop.I will post again when we have all the info. I truly hope that we have enough responses to schedule one sometime in the near future. In the meantime, please know that i send you my best thoughts for your healing. Please have hope, you will get better . I know that it seems to take forever sometimes, but believe me(and I've been there) if you are under Matia's care and following the protocol , you will improve!Jeanne Townsend
Jeanne
Are you going to post your success story? It would be great to read your story to give us a bit of background. The success stories are really encouraging to read and give hope to both current and future patients.