Diagnosed and Determined: The Tenacity of Terrie Montgomery

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By Lonna Whiting | November fifteenth, 2022

Since Terrie Montgomery was identified with early-onset Alzheimer’s in 2015, she’s been an advocate for her personal well being — and the well being of others. At this time, she’s rallying for equal entry to Alzheimer’s diagnostic care and remedy for the tens of hundreds of thousands of People who depend on Medicare.

This text is a part of the collection Variety & Dementia, produced by Being Affected person with help offered by Eisai. 

If Alzheimer’s advocate Terrie Montgomery may describe herself, she’d let you know she’s “versatile.” 

All through her profession, she’s labored as a tax guide, customer support supervisor, public speaker, social employee and accountant.

With a level in human assets administration, Montgomery has all the time liked individuals, and he or she discovered her true calling as a HUD consultant serving to people and households reclaim their independence.

“That was my pleasure to really discover individuals and pump it into them that they might do that. I wished them to see in a greater gentle,” Montgomery informed Being Affected person. “So I helped quite a lot of them turn into impartial and acclimated into the occupations they liked.”

After which in 2015, she began forgetting names. 

“I received circled getting back from lunch someday. Then I forgot methods to fill out these particular studies we needed to do. I forgot it and I used to be the one who taught the particular person in HR and finance methods to do it,” she stated. 

Montgomery ended up leaving the workforce as a result of she couldn’t sustain tempo or keep in mind individuals. She sought a medical opinion, however as a result of she was in her early 50s, medical doctors shrugged it off and informed her, “You is likely to be on the change of life. You is likely to be working an excessive amount of. So then he stated, ‘Let’s simply watch it,’”  Montgomery stated. “Six months later, and exams, and that was it. I had it.”

Some may contemplate getting a dementia analysis to be the start of the tip, however Montgomery noticed it in another way. Her illness — after two back-to-back most cancers diagnoses — appears to do nothing however gas in her a tenacity to maintain going, particularly when confronted with myriad well being care system disparities. 

“Nothing goes to cease me from talking up proper now. I’ll communicate up till I can’t anymore.” –Terrie Montgomery, Alzheimer’s advocate

Montgomery can be a founding member of Voices of Alzheimer’s, an advocacy group of individuals residing with Alzheimer’s and different dementias. She spoke on behalf of Voices of Alzheimer’s at Rally for Entry in Washington DC on March 15, 2022, the place she mentioned the Facilities for Medicare and Medicaid Providers’ resolution to say no to cowl FDA-approved remedy aducanumab. 

It’s a part of a sample, Montgomery and her colleagues at VOA say, of CMS discriminating in opposition to individuals residing with Alzheimer’s — and it deepens the current racial and socioeconomic divides that exist already round Alzheimer’s danger, analysis and care.

Analysis exhibits that Black and Hispanic People, who’re already at an elevated danger of growing the illness, are usually the final to get precisely identified. They want entry to reasonably priced preventive and diagnostic care — and as soon as monoclonal antibody medication are extra broadly out there, they’ll needn’t solely Medicare protection of the medication, however Medicare protection of PET scans, that are vital to diagnosing Alzheimer’s and to drug trial participation. CMS doesn’t cowl these procedures both.

Montgomery is combating for change, and he or she feels good about what’s to return. As she stated, “Nothing goes to cease me from talking up proper now. I’ll communicate up till I can’t anymore.”

Right here’s extra from Alzheimer’s advocate Terrie Montgomery. 

Being Affected person: When did you begin noticing you had an issue together with your cognition? 

Terrie Montgomery: Round 2012 to 2013, I launched all my purchasers, as much as 200 of them, as a result of I used to be changing into totally different. Forgetting. I type of let issues go, and that wasn’t like me. As I progressed extra, within the subsequent few years, I couldn’t keep in mind passwords.

Being Affected person: Inform us about your well being journey since then.

Montgomery: After my Alzheimer’s analysis in 2015, I used to be identified with breast most cancers in 2016 and once more in 2017. Not solely did I’ve a three-month ready listing earlier than they’d carry out surgical procedure, however the physician (for my preliminary analysis) stated that he would make it simpler for me to deal with by giving me a neighborhood lumpectomy as a substitute of a mastectomy. I pursued a second opinion in 2017 they usually found I had malignant breast most cancers in each breasts. (The primary physician) was not enthusiastic about my welfare and my care, as a result of you recognize, I’ve dementia that they don’t actually care. 

In 2019, I had one other expertise a few disparity, which was I went to a brand new physician for my routine examination (after relocating). She says, “OK, effectively, I’m simply gonna subscribe you some Aricept.” I’m like, “You already know, I’ve Alzheimer’s, early-onset; you don’t even have my data. You don’t know what sort of dose I’m on, or what I’m taking presently.” I used to be dismissed. 

 

Among the many advocacy points Terrie focuses on, she rallies for Medicare protection of medication and procedures vital to the analysis and remedy of individuals residing with Alzheimer’s.

Quickly after, I went to the physician as a result of I used to be having issues with my abdomen. She stated it’s most likely simply my food regimen, what I’m ingesting or not sufficient water. I must be okay. I pushed again once more and went for a second opinion. That ultrasound revealed I had a pelvic mass. Docs failed to inform me breast most cancers can flip into cervical most cancers. That’s after I discovered to essentially communicate up. I requested for extra exams. These revealed the mass was benign.

In 2022, the most cancers got here again after I had one thing that was flawed with my thyroid, however I used to be by no means made conscious of that. So as soon as I got here for my second opinion, they’d the thyroid exams, they usually all the time will observe and see how these numbers had been. I wind up getting my thyroid eliminated in April of this yr. And after I had it eliminated in April of this yr, I took a foul hit cognitively. 

In addition they informed me that it was potential I might lose my voice. My spirituality is powerful, and as you see, I’m speaking to you in the present day. 

Being Affected person: What prompted you to get into well being care advocacy?

Montgomery: I used to be a affected person that had seen how medical doctors deal with individuals with dementia, and that’s why I’m so keen about well being care. You’re handled a bit of in another way (due to dementia). Due to how many individuals in the event that they don’t communicate up, or in the event that they don’t have somebody to characterize them, they are often lifeless.

I cry out a lot as to cease limiting what individuals can do if they’ve Alzheimer’s. They deserve the identical care and have the identical physique as somebody who doesn’t have it. 

The identical with drugs and scientific trials. So a drugs is obtainable for this group over right here nevertheless it’s not out there for that group over there. And if we nonetheless occur to get one thing else alongside the way in which like I did, that’s extra for them to check and analysis that they’ll do, and other people to have the ability to take part regardless. You’ve received to have a gaggle that claims we don’t care in case you received Alzheimer’s, we don’t care. We wish you to do that, or at the very least we will make a distinction in order that all of us can contribute. 

Being Affected person: What would you like individuals to find out about Alzheimer’s affected person rights?

Montgomery: We’re entitled to the identical rights as somebody who doesn’t have it. Simply because we’ve Alzheimer’s doesn’t imply that we might not get that we might not get one thing else. After which we do get one thing else, why can’t we get handled for that too? Except we are saying one thing, it’s not going to get any higher. 

I simply assume that no matter developments and our medicines which might be on the market to assist, that it’d be out there to all to not some. After which if there’s a method that all of us could make a contribution in direction of our medicines, put it on the market and provides us the chance to contribute. Options must be for all, not for some. 

Being Affected person: What retains you going and what do you inform others residing with dementia?

Montgomery: I’ve saved myself busy. I all the time have to remain busy. I inform individuals as you start to lose issues, simply deal with the issues that you are able to do no matter they could be, and discover methods to get via it. 

Sure, when you could have these issues, you’re gonna neglect, you’re gonna pause, you’re gonna want time to understand issues on his journey. 

I intend to do that all the way in which to the purpose the place I can’t. I’ll neglect, you recognize. However the backside line is that I shall combat till the tip and simply ensure that different individuals with this illness get handled pretty. 

I’ll by no means surrender. By no means.