Looking for Brain Tumor Support Groups to meet others

Posted by mikeshaw28 @mikeshaw28, May 9 1:41pm

My father was recently diagnosed with a stage 3 glioma tumor. I am looking for support groups for him and my family so he does not get down on himself and stop fighting. Making some friends going through similar situations might help him.

Hello @mikeshaw28 and welcome to Mayo Clinic Connect. How great of you to seek out support groups, such as this Brain Tumor Support Group right here on Connect for your father following his diagnosis.

There are several discussions that he can explore right from within this group and also is able to create a new one of nothing matches what he is looking for. Please invite him to join and we can work to get him connected to others with similar experiences in discussions that are relevant.

As for you and other family members, I might suggest exploring the Caregivers Group where you can connect with others who understand what you are going through while walking this journey with your father.

– Caregivers Group:
https://connect.mayoclinic.org/group/caregivers/
Is he interested in connecting with others or is this a suggestion you plan to make?

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Hello @mikeshaw28 Nice to e-meet you here on Mayo Clinic Connect. I am Scott and 'found' Connect while I was my wife's caregiver during her 14+ year war with brain cancer. I was in search of a community I could interact with at any time of the day or night and at my own pace. Connect filled all those needs for me and also offered a safe and open environment to discuss my concerns as well as those of my wife's.

While I certainly understand that everyone's journey and experiences with cancer are unique, as are those of the their caregivers, I found lots of support, ideas, tips, and more that helped both of us.

Please feel free to ask any questions you might have. I believe you will find this a very helpful community!

Strength, courage, and peace

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Hi I have recently been diagnosed and am terrified. I am 67 with barely any support

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Hello @sal9 While I am sorry to read of your diagnosis, it is good to see you found Mayo Connect. I am Scott and my wife was diagnosed with brain cancer at 48. As her caregiver, I, too, felt no support and that was how I found Connect. I have found Connect to be a supportive community as a patient-to-patient group that is very willing to offer their insights and suggestions.

If I may ask what type of brain cancer were you diagnosed with and have you begun any treatments?

Strength, Courage, & Peace

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@sal9

Hi I have recently been diagnosed and am terrified. I am 67 with barely any support

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I am really sorry to hear of your recent diagnosis. Please know you are not alone and you are being prayed for.

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Hi, my name is Paula Harmon. Four years ago I suffered from a ruptured massive aneurysm and was in a coma for three months. I had to learn how to talk again, and walk again. But three months ago I had another stroke, behind my left eye, it was then they found I had a shunt that need closing in my heart. That was another two weeks in the hospital. I live here in Alabama and I am now struggling to get Social Security. I have worked from the time I was 19 to three years ago, and I suffer from dizziness and bouts of depression. I would love to know if there was any doctor here in Alabama that can help me? Please my son now has to help my financially and sometimes physically.

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@paulah1

Hi, my name is Paula Harmon. Four years ago I suffered from a ruptured massive aneurysm and was in a coma for three months. I had to learn how to talk again, and walk again. But three months ago I had another stroke, behind my left eye, it was then they found I had a shunt that need closing in my heart. That was another two weeks in the hospital. I live here in Alabama and I am now struggling to get Social Security. I have worked from the time I was 19 to three years ago, and I suffer from dizziness and bouts of depression. I would love to know if there was any doctor here in Alabama that can help me? Please my son now has to help my financially and sometimes physically.

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I just want to add to that last comment I made, I also had a stroke during the ruptured of my aneurysm.

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This is me before the ruptured aneurysm, and the after aneurysm

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@paulah1

Hi, my name is Paula Harmon. Four years ago I suffered from a ruptured massive aneurysm and was in a coma for three months. I had to learn how to talk again, and walk again. But three months ago I had another stroke, behind my left eye, it was then they found I had a shunt that need closing in my heart. That was another two weeks in the hospital. I live here in Alabama and I am now struggling to get Social Security. I have worked from the time I was 19 to three years ago, and I suffer from dizziness and bouts of depression. I would love to know if there was any doctor here in Alabama that can help me? Please my son now has to help my financially and sometimes physically.

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Hi Paula,
I'm so sorry to hear how radically your life has changed due to a medical crisis. Thank goodness your son is there to help you.

You might also look into "My Help Navigator" https://myhelpnavigator.auntbertha.com/ It is a social care network that connects people and programs — making it easy for people to find social services in their communities. You will find free and low cost services in your area.

Here's the link to My Help Navigator: https://myhelpnavigator.auntbertha.com/

@amy3997 and @otis123 share some helpful tips about social security and brain tumors in this discussion:
– Important Financial Information re: Glioblastoma https://connect.mayoclinic.org/discussion/important-financial-information-re-glioblastoma-if-you-have-kids/

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