We rise by lifting others

As a young survivor, Im blessed to be able to share my experiences and lift others who are going through similar things. With that being said, one thing that has become apparent to me is seeing that after hospitals give a patient rehab and follow protocols, insurance gives out and regardless if the avm/stroke patient has recovered or not, they get left in the dark and start to believe that they cannot make a full recovery.

Im currently working with a team here in Northern California to provide resources like rehab and support for those who are in need of recovery and support. Our support group will meet 1x a week, have guest speakers, and discuss solutions to the problems and hardships we face as survivors .

The purpose of this topic was to see who would be interested in coming and to get the word out. Whst do you guys think?

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Iā€™m a bit far away to participate being in Australia, but I certainly agree that the support services are very lacking post hospital care. In fact the attitude of ā€˜well, this is as good as it getsā€¦ā€™ is very common and unless an individual has a determination to seek services and self improve many can be left to flounder on their own.
Being a former healthcare worker myself I know that there are services available BUT these can be very disjointed as a network and trying to locate and access such services can be difficult.
I think that setting up a support group/network for survivors is a very good idea. A sharing of resources can only be of benefit for everyone.

Merl from the Moderator Support Team

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While Iā€™m closer than Australia, Michigan is still too far to do things in person. But I think that the power of this group illustrates that you are on to something and that it definitely is needed.

An example of that - my insurance company has a procedure where they assign ā€œcase managersā€ for the more complex patients. We have one for my daughter (heart patient) and I have one. Mine has said a number of times, ā€œWow, Tom, you do a wonderful job advocating for yourself. I wish more people would do that as well as you do.ā€ That, when combined with what you said, shows that the need to raise awareness and availability of support so that people donā€™t ā€œgive upā€ but at the same time learn how to live with what they are stuck with (as I expect that is what my end result is going to be).

So, yes - do it, I would support it and encourage it. If you are near the Bay Area, you can probably find enough people to make it fly. Around here, Iā€™m not sure there would be. Any way it could happen online?

Rambled enough for nowā€¦

drops mic and goes to bed

Tom

Monica

Iā€™m completely with the others. Great idea. Iā€™m sure there is a need. But these things (other than a forum like this) often need to be local to the people youā€™re trying to serve.

If there is a way we can support from round the globe, we could do that. Maybe you could have guest speakers via webcam! Other than that, I feel just as far away (and thankfully, I havenā€™t had a bleed yet nor need for rehab or physio therapy).

Youā€™re absolutely right about lifting others. Thatā€™s what I like about this forum. If I can make a tiny but positive difference to someone anywhere on the globe, I like to try. Whether itā€™s someone in South Wales, New South Wales, Michigan, California, Scandinavia or anywhere. I love that we can do these things.

Very best wishes

Richard

Hi Merl!

Thank you so much for your response! Your contribution to this post has made me smile knowing its reached a fellow survivor like you in Australia! Altgough you are far away, Iā€™d like to make this to where it can be recorded live via livestream or something along that nature :slight_smile:

Hi Tom! Thank you so much for your response! I am hoping this starts a chain reaction to where others can start groups like these in other Cities. When I had went to a group in San Francisco last week, a local survivor was in touch with a survivor all the way in Canada. Since the Canadian survivor could not be there physically, she put her on the phone and set it down on a chair in the middle of the discussion so she can participate in spirit. I would love to do something similar or even broadcast online via live stream or something.

Hi Richard! Thank you so much for your response. By doing this for my local community of survivors, My goal is to inspire other survivors in other cities ( possibly even states and countries) to do the same. I would love to have our group meetings broadcasted online via live stream or something so everyone can feel inspired and can participate :slight_smile:

Hello @monica3 I am in the Bay area and would be interested
Angela

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@monica3 I too am a young survivor (35), I live in San Diego but would love to participate! The first year post (3 brain ) surgeries was a very difficult time for me but everyday now I am just SO appreciative of my life and to be alive! After having to learn how to do EVERYTHING again, I love to share my story in hopes of inspiring others. Please let me know how I can help!!!

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https://avmsurvivors.org/t/sharing-my-story/19931?u=beccav

I think this is fantastic Monica, most of us know that support from those who understand is incredibly beneficial. The sharing here has been significant for me. I wonder how many out there are alone and could use an ear to listen or a helping hand. I think youā€™ll positively impact many. Thanks for all your efforts. Take Care, John.

Agree 100% ā€“ Iā€™m an RN in Southern CA and as a fellow patient with DAVF, realize the resources for patients/families before, during and after are really lacking. Such a need for education and diligence. Iā€™ve often thought about starting a support group/resources here too and trying to get centers/hospitals here buy-inā€¦yes, the word needs to get out in all areas of the country and internationally too.

We should connectā€¦I am also in San Diego. My care is with UCSD Dr. Khalessi. I am post embolizations x2 but the last one cause left eye blindness - some struggles and challenges for sure especially with driving and my career as an RN. But I am coping. Still have residual DAVF and more treatment to come possibly.

I was a patient at UCSD in 1986 with Dr. Charles Kerber - he was a great guy and a great doctor and he never actually did anything.

Oh wait, actually his hands were plagued with arthritis so the other doctors were the hands and he was the brains behind things. After I was there, he flew to Paris to present my case to a conference. I wish I could have gone but I was in no condition for any more travel. Right now Iā€™m probably 50 lbs overweight and I weighted 110 lbs less than I do now. Yeah, gaunt would describe me.

I donā€™t have good memories of San Diego from that trip but we were back since then to visit friends - navy doc in Chula Vista - and then we enjoyed it.

Tom

Monica - two thoughtsā€¦

As you set things up, set it up with the idea and the framework of making it easily copied. Donā€™t make someone in Dallas and Chicago and ā€¦ Have to reinvent the wheel. Does that make sense?

Also, I donā€™t know the details of the way they do it but there are ways where group conversations can happen over the web - you could have a core group of 5 people in Fargo North Dakota and then 2 more in Cincinnati and 3 in Phoenix Arizona and then you could all see a split screen which had each location on it. Iā€™m not sure what is required but I know it can be done.

Keep thinking, keep talking and keep the faith,

Tom

@PositiveCathy Definitely! I would love to connect!!

Monica, Tom,

These are online meeting tools. There are several, e.g. Blue jeans, Go-to meeting, WebEx, Bomgar, Skype. We use one of these at my work. You can have a three-way conversation with at least one of these without charge and prices for larger start around the Ā£15 a month mark.

I could set up a demonstration meeting if we need one.

Richard

Awesome
Iā€™m in Bay Area and happy to help

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Hello, everyone!

Geez, I am so amazed to see the evolution of support systems for AVM survivors! As I have mentioned in the past, NOTHING was available at the time of my craniotomy. I had a very difficult time even finding medical literature regarding the cerebellum and AVMsā€¦and, I too, am an RN. Fellow survivors? Ha!

I joined a support group for people with chronic painā€¦ the ACPA, the American Chronic Pain Association. Perhaps they could advise you on the process of developing the principles, goals, and structure for your organization. ACPA is headquartered in Rocklin, CA, and has support groups throughout the U.S. and some countries outside.

Thank you for reaching out to others. :slightly_smiling_face:

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My son is an AVM survivor as well and is seen by Dr. Sanchez Mejia at Scripps. I think you might have been the counselor at my husbandā€™s school. CCA?