Medical Guidance

I know patients using this approach. I understand it is expected to be less effctive because some of the cromolyn is too close to meals. but people who can't do 4oz at a time or have otherchallenges around the normal dosing.

I take mine in gatorade (can't do striaght water) but do the 4 oz liquid to 1/2 tube cromolyn 4x daily which works for me.

Hi, I’m Mel, a board-certified Adult-Gerontology Acute Care Nurse Practitioner. I have 20 years of experience in endocrinology, intensive care, and diabetes management. I also have extensive personal and professional experience supporting individuals and families affected by dementia. I am based in the Chicago area and offer self-pay services; I do not accept insurance. I would be happy to partner if self-pay is an option for you.

Hi Xena,
I am not in the Chicago area but may be able to help virtually if the clients are in a position to do so. Feel free to reach out if I can be of assistance.

Hi Xena,

Thanks for reaching out! I live in a northern suburb of Chicago and have extensive experience with Diabetes Management.

I offer a 10-minute complimentary consultation to clients and work both in person and virtually. I'd love to discuss more to determine if I'm a good fit for collaborating with you and your client.

I'm getting married in 2 weeks and will be available to take on new clients after 9/7.

Meanwhile, I hope you find some great advocates who can help!

Marilyn Kier, BCPA, BCTMB

Hi Rebecca,
I’m in Orange County and would love to connect. I tried emailing you but it was returned as undeliverable.
My email is amy@entrustedhealthadvocates.com

hi Rebecca! We've got quite a lineup of advocates in the LA area.
I'm used the PA360 message feature to these advocates and encourage them to join this post. you can also do the same- use this search,and use the 'write a mesasge" to connect to any advocate.

gnanow.org/advocates?search_type=speciality_id&speciality_id=18&locations=Los+Angeles%2C+CA%2C+USA

I am in CO, I’d be happy to connect.
I specialize in cancer and survivorship.
There is a webinar I am doing that you might be interested in participating as well, since it involves billing.

Here is the link:
triagehealth.org/webinars/medicaid-changes-patients/

~Katherine

THANKS fo rsharing!

also — there is a NAHAC webinar around GLP1s this week:

www.facebook.com/groups/616959243721609/posts/1379504134133779

Thanks so much for sharing this, Renea!

CONGRATS TERRY!!!

www.facebook.com/share/p/18MJ57Drmm/

Hi, Lorna! We've just started a quarterly gathering of the social workers that are plugged into GNA now. Our next meeting is in October. Check an eye out on the GNA closed FB group as well as here. Welcome!

If they are in chicago or IL I'd love to help

Hi Rachel, I have some openings. All my clients have chronic conditions, and more than a few have hEDS in addition to other health issues. In addition, I myself have POTs, fibromyalgia, Lupus, Secondary mast cell, and likely hEDS. So I deeply understand what those with chronic conditions are going through. Please feel free to reach out to me at elizabeth@StraightfromtheHeartPA.com or 442-777-3251.

Hi Rachel. I recently started taking clients in need of surgical companion and/or medical travel logistics services. My specialty is with patients needing craniocervical fusion, Chiari decompression, tethered cord, styloidectomy, vascular decompressions as I have experienced those myself. I recently retired and am able to travel with those needing companionship. I am not sure if I can share my website here, new to GNA and so grateful! Cyndi Eide

Thank you for sharing such a powerful and personal story. Your message is an important reminder that every patient deserves dignity, respect, and compassionate care, regardless of their size or health condition. I appreciate your willingness to speak up for those who often feel unseen or unheard. You are a force!!!

Dalia,
First, i'm so incredibly sorry for what your family went through. NO ONE should ever be treatd that way, for any reason whatsoever.

Second, YES! THANK YOU for saying what is so often unsaid — that weight is about so much more than willpower.

My youngest was a competitive bicyclist. She regularly went, literally 100 miles in a day on her bike. When we were seeing docs about her post-exertional malaise and her orthostatic intolerance, EVERYONE tried to blame her weight. When i explained how fit the girl was, then they would blame overtraining and yet also somehow come back to it being due to her weight. Drove me CRAZY and drove her away from medical care for a long time.

THANK YOu for saying what needs to be said.

I do not know any SLPs in that area, however, you can check the state licensing board to see if they have a directory. shp.ohio.gov/for-the-public

also, here are advocates within 75 miles of that location that may have some guidance for you:
gnanow.org/advocates?search_type=speciality_id&speciality_id=18&locations=Columbus%2C+OH+43085%2C+USA&distance=75

Here are adovcates who are m ost likely to have those connections:

Angie Galatas, SLP gnanow.org/advocates/medi.html
Shlomit Liberty, SLP gnanow.org/advocates/shlomit.html
Hannah Klassy, SLP of Dementia Dimensions gnanow.org/advocates/hannah-klassy.html

Karen, this is GREAT! Would you consider also making it a blog post with us? in your «gna dashboard» is the blog creator. You can simply copy/paste it there, do any edits you need.

At the BOTTOM you are welcome to write a brief bio and to include information on your free resource site.

This is very helpful. Thank you for sharing!

I will keep my ears open and if I think of anyone or hear of anyone I will send them your way.

Leona — what a GREAT and important topic!!! Thank you so much for sharing it.

If you'd like, you may also share it as a blog post. If you need help doing so, just email me at help@gnanow.org and I'll show you how.

Thank all of you, so much, for your input. It means the world to me how thoughtful you have all been in trying to contribute positively to this situation.

You all are echoing something I knew from the start: it's all about how she's framed. It was my goal from the start to figure out what angle I can take...how to change how the healthcare system is seeing her. Perspective rules everything, doesn't it? And as an advocate, and a nurse, my goal is always collaboration first...I don't want to go into this meeting opposing things. That won't get my client what she needs.

You all have given me several excellent pieces of information and things to be thinking about. Though I have so much experience, I will constantly be learning and leaning into this amazing community.

Depending on how this meeting goes tomorrow, I may call on those of you who have offered to assist. As a type A personality with a fiery passion for this, I absolutely need to make sure I've done everything I could. My conscious won't allow anything less.

AnnMarie — please do share via the private facebook. All thoughtful comments/advice is welcome.

Again, thank you.

Hi Blaire,

I spoke in depth with the girl's aunt when they were searching for an advocate. I am so sad you are still running into denials. So many wrong steps have been taken when this family is willing to do anything for her. What is wrong with people!?!?

I spoke with some contacts who were willing to help as best they could. I am happy to pass them on to you.

I am not nearly as capable as you with this case, but I am here to lend a familiar ear. I am also available if the family needs anything I can help with for caregiver support.

Thank you for sharing this case and for using PA360º as a thoughtful sounding board. Your approach reflects both humility and resourcefulness. Creating space for peers to weigh in not only opens the door to new perspective, but can be grounding and clarifying in complex situations like this. Even advocates benefit from the insight of other advocates. I appreciate your openness and commitment to getting this right, Blaire.