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Deborah Marcus Urgent Need-Deep Brain Stimulation

$7,070 of $15,000 goal

Raised by 109 people in 1 month
Created November 23, 2018
Denise Burhenn Portis
on behalf of Deborah Marcus
Deborah Marcus urgent need for Deep Brain Stimulation treatment for severe, chronic facial pain

Many of you know my friend, Deb, through a connection to hearing loss and HLAA (Hearing Loss Association of America), disability advocacy, and writing for her own blog “
Visions of Song ” and my blog “Hearing Elmo ”. Deb is also a nature photographer and many of you may know her best through the photos she shares in social media and her blog.  One friend has said that Deb’s photos make Facebook a more beautiful place. Throughout the years, she has done wide-ranging community work, including substance misuse and abuse prevention, engagement with the Hearing Loss Association of America and hearing loss community (mentoring cochlear implant recipients), and the Brain Injury Association of America and state organizations. Deb has spent most of her life working to support and assist for those who often desperately need an advocate and friend. For those of you who have never seen her nature photos, a few are shared on this page for your enjoyment.

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Not everyone knows that she has lived with facial nerve pain for many years, along with other invisible disabilities. The nerve pain, atypical and complex trigeminal neuralgia, has worsened in the last few years and has become a constant challenge and disability in her life. Deb’s chronic pain and disabilities have caused her to become terribly despondent and she struggles to maintain her equanimity, fighting depression and thoughts of suicide. She has a team of specialists who have attempted to address her pain with gamma knife radiosurgery, nerve blocks, and medication, to no avail. She recently had  consultation with a neurosurgeon at the Mayo Clinic in Jacksonville, Florida. Deep brain stimulation (DBS) is utilized in patients who have refractory pain and who are otherwise deemed good candidates, and is one of the procedures which was discussed at this visit. Due to the complex nature of Deb's condition and symptoms, the specialist is recommending pursuing another path in the follow up with her local neurosurgeon before making plans to try DBS. Deb lives in North Carolina, and is currently unemployed due to her medical conditions. She has applied for disability (SSDI) but after receiving initial denial, is pursuing appeal of the decision. This is notoriously a long, drawn out process. With no income since June, she has used up her savings reserves and is in medical and financial crisis. What Deb would love most of all is to get enough relief from the chronic, severe pain to be able to re-engage fully in life, return to making contributions to her communities, and become self-sufficient once again, as she has been all of her life. To this end, she needs help managing the costs of travel and care while receiving treatment, during recovery, and maintaining her basic living arrangements for the next several months while she pursues disability appeals. The denial stated that they recognize her condition is severe, but they are not sure that it will last more than 12 months. Deb’s advocate feels this is the “best kind” of denial because it means they do recognize that she has a severe condition, but still the appeal process must be pursued to approval. 


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Deb is a beloved friend to so many, and she is so appreciative of all the care and outreach that folks have made as they learn about her situation. It is hoped that you will see your way offer a donation and to share this account and your personal connection to Deb with the people in your life who can help support her through this exceedingly challenging chapter in her life. She has written about her chronic pain journey at Hearing Elmo; posts that can be found here in Part 1 , Part 2  and Part 3


Information about Deep Brain Stimulation (DBS) can be viewed here: CLICK HERE 


A detailed list of expenses is provided below. It is based on basic living needs for the next 8 months (disability appeal can take longer, but it’s certain to take at least this amount of time) as well as the extended care needs before, during, and after DBS and other treatments and procedures that will be pursued in the effort to reduce the level of severe pain that Deb lives with and improve quality of life. 


Essential living needs: rent for room currently occupied, car and apartment rental insurance, phone (one cell with data, currently locked into contract), gasoline, cochlear implant batteries, food costs supplementing food stamps approved at least until June 2019, health insurance premium (Deb receives tax credits due to low income based on anticipation of disability approval in late 2019), co-pays, deductible. $1000/mo. x 8 months = $8000.00.


Expenses for care locally as well as at Mayo Clinic for consult and treatments: recovery can take many weeks, most intensive the first weeks per procedure. Transportation, housing while out of town for consult and care, support staff/care. Estimating 4-6 weeks overall stay in Florida if DBS is pursued, weeks of support and recovery for local medical procedures, covering food and general expenses for self and supportive help and need to pay for care service locally as well. Deb does not have a partner/spouse or children, and while friends want to help, their availability will be limited in time and scope. $7,000.00 for local and distance medical care and support needs.  


TOTAL GOAL: $15,000.00 ($8,000.00 for essential living needs and $7,000.00 for medical care and recovery needs).

Thank you in advance for gifts and sharing with friends and family. Together, our donations can make a difference and assist Deb in this urgent need for receiving life-saving care.

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Update 2
Posted by Denise Burhenn Portis
15 days ago
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As we prepare here for our entry into 2019, we send heartfelt wishes to you, for all kinds of wonderful things!

Taking a moment to check in and give you a bit of an update on the journey that my sister/friend, Deborah Marcus, has been on this year.

At the last update, I shared that Deborah headed to Mayo for the consult she had been hoping for with the neurosurgical specialist there. Indeed, a thorough visit with the doctor shed some light, not all of it what we wanted to hear, on the nature of her complex facial and head pain, and on treatment options to be considered at this time. Deborah felt that she was being heard by the doctor at Mayo, and she was offered much information and explanation of the pros and cons of possibly pursuing deep brain stimulation (DBS). It is not off the table entirely; however, in its current usage of the treatment for intractable pain, it is not the first thing that the consultant will be advising to the local neurosurgical team. They have had some measure of success in treating chronic pain with DBS but to date it has been focused on patients with a specific set of conditions and for an equally specific pain symptom. Deborah is not a classic case for DBS for pain at this time. Having said that, the doctor was clear that we may well attempt it down the line; however, he cautioned doing it without trying some other things that may or may not address one set of pain symptoms that she experiences. Deborah has a visit with her local specialty team on January 7th. At that point we’ll have a clearer idea of the next step in this journey. It has been hard for Deborah, as she had so hoped, as many of us prayed for as well, that DBS would be seen as a logical next step for treatment, since she has had little to no relief from any analgesic treatments. She has come through the difficult first days following this consult, and feels there are still options. She is more grateful than you can imagine for all the kind and generous contributions, the notes, the messages, the prayers, the thoughts of good will.

Deborah continues to have grave practical needs, due to ongoing inability to work due to the chronic, debilitating pain. She has used up all of her savings, and she awaits determination on the reconsideration appeal following denial of her initial disability application. Additionally, further treatment options will mean that she will need assistance at times to manage daily living. As I’ve mentioned previously, I as well as many others can verify that she exists on very little as Deborah lives frugally, from a financial perspective. Your gifts toward the anticipated costs, detailed in the body of the GoFundMe page, are making this possible. Again I must share that from a spiritual and inspirational perspective, Deborah is one of the richest people I know. She brings warmth and love and creativity to our world.

Please share the need with others! GoFundMe makes it really easy to do. From the margin on the page, simply click the “share” button, and a number of social media options become available, as well as email options.

With gratitude for all the donations, comments, and prayers for Deborah.
Denise Portis

*Enjoy one of Deborah's photographic abstracts, shared today!
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Update 1
Posted by Denise Burhenn Portis
1 month ago
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1
1
The dragonfly, in almost every part of the world symbolizes change and change in the perspective of self realization; and the kind of change that has its source in mental and emotional maturity and the understanding of the deeper meaning of life.

The traditional association of Dragonflies with water also gives rise to this meaning to this amazing insect. The Dragonfly’s scurrying flight across water represents an act of going beyond what’s on the surface and looking into the deeper implications and aspects of life.
---------------------------------------------------
I cannot begin to thank you for your outpouring of love and support for my sister/friend, Deborah Marcus. Over $6400 and many comments, notes, and prayers submitted and encouraging Deborah as she faces this battle ahead... no longer alone, with scores of people supporting her in this fight for a life without unmanageable and debilitating pain.

We are off to such a great start, Deborah was able to go to Mayo this week for her first consult. She left a few days early to beat the blizzard in North and South Carolina. I hope you will continue sharing her financial need and we have great faith her goal will be met.

If this is the first time you are checking in on this fundraising effort, please know that this is a last and very desperate shot for Deborah to gain some relief from chronic, debilitating pain. Having been unemployed for some time because she has been unable to work, Deborah has used up all of her savings and is currently awaiting an appeal for SSDI. Deborah lives very frugally - from a financial perspective. I, and many others, can verify that she exists on very little as far as costs of daily living. Your gifts (detailed for specific anticipated costs in the original description of her need) are making this possible. From a spiritual and inspirational perspective, Deborah is one of the richest people I know. The dragonfly picture shown, is one of my own cochlear implant. The dragonfly represents my support of Deborah. My bathroom (walls also shown) is adorned with several of her beautiful dragonfly photos. Like the symbolic meaning of the dragonfly, I have faith that change is coming for Deborah. I am hopeful that this significant step in her treatment plan, deep brain stimulation for trigeminal neuralgia, will be possible through your continued giving. Please share this need with others! GoFundMe makes it very easy to do so. From the margin on the page, simply click the "share" button and a number of social media options become available, as well as email options.

I hope you know how much the donations, comments, and prayers mean to Deborah.

With anticipation of goals met and love shared,
Denise Portis
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$7,070 of $15,000 goal

Raised by 109 people in 1 month
Created November 23, 2018
Denise Burhenn Portis
on behalf of Deborah Marcus
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