STIGMATIZATION Strikes Again

(I know I posted this Blog Post several months ago but I wanted to post it again for it still struck a nerve with me. I also needed to correct some grammatical errors. 😎
There are some unbelievable, super-intelligent and Person-Centered Focused Neurologists and other Medical Professionals who I have had the pleasure to meet and learn from. I am a much more educated person because of them.) 

It’s been a while since I have been personally stigmatized. It was a good run! Sure I still hear comments like, “If I didn’t know you had Alzheimer’s, I would have never known,” but I don’t consider that Stigmatization. I actually consider it a compliment. It means everything I have been doing to keep my brain busy (i.e.speaking engagements, social engagement, word puzzles, daily exercise, listening to music) I’m doing what I need to do to keep my Alzheimer’s at bay.

In a recent conversation with my friend and someone who I consider a Mentor, Dr. Al Power, I was told the story of Christine Bryden. (I’ve included a link to her website below). Christine (who lives in Australia)  was diagnosed in 1995 with Dementia but has continued her Advocacy for 20+ years after her diagnosis. Christine has been a passionate advocate for people with dementia, addressing conferences around the world and appearing in the media.

At one such conference, Christine displayed a photo of her latest MRI. The MRI showed multiple bare spaces in her brain which prompted a Neurologist in the audience to interrupt her, saying, “That can’t possibly be your brain. No one with a brain that looks like that can possibly speak as well as you do.”
With no reasoning and by his own assumption, this Neurologist   “STIGMATIZED”   Christine, basically calling her a liar.

Christine continued her presentation.

(It is clear that Christine has considerable brain loss, but functions as best she can by writing, speaking and traveling with the enabling support of her husband, Paul.  She often says that if only people could see the brain damage, they would cheer the dementia survivors. Christine questions attitudes towards people with dementia, which can often be patronizing and demeaning, lacking in understanding of the difficult battle to cope each day with ongoing brain loss.
Christine is driven to continue her advocacy as a survivor, encouraging others to follow in her footsteps, speaking out to improve services and support for people with dementia at all stages in their journey from diagnosis to death.)
christinebryden.com/christine-now

I posted this portion to give you an understanding that Stigmatization knows no boundaries, is worldwide and doesn’t discriminate.

So now, for my “STIGMA STORY” which isn’t as severe as Christine’s but troubling all the same.

I was having trouble sleeping. I hadn’t slept but a few hours each night for about the past 3 or 4 weeks. So, thinking it could be something Neurological, I made an appointment with a new Neurologist. (my previous Neurologist had not done anything with me or for me in a number of years.) I was hopeful that my new Neurologist would be a change in the right direction.

He came in and it struck me how young he looked but I took that as a good thing thinking, maybe he has all the latest training and expertise regarding Alzheimer’s Disease. I learned quickly that looks really can be deceiving.

We exchanged introductions and he asked me what brought me in to see him. I found that to be a bit strange for if he had read my file, he would’ve known that information.
I asked him, “was that information not in my file?”
He replied, “I don’t know, I didn’t look.”
I left that alone and just started telling him of my sleep challenges.

During my explanation, I noticed he was looking at my file and not listening to what I was saying for he interrupted me, by asking . . .
Dr.  “you have Alzheimer’s Disease?” 
Me: “Yes I do!”
Dr.  “when were you diagnosed?”
Me:  “is that not listed in my file”?
Dr:   “I can’t find it.”
Me:  “It was October 2014.”
         HERE’S WHERE IT GETS INTERESTING
Dr.   “I don’t think you have Alzheimer’s Disease.”
Me:  “Ha Ha Ha! How did you come to that conclusion.”
Dr. 
 “well, you don’t talk like you have Alzheimer’s.” (I thought . . . WOW!!! he is good! He should go far in his field)
Me (being a smart-ass): Well, if you like, I can introduce you to a number of people who, like me, have been diagnosed with a Dementia-Related Illness who can speak just as well as I can and some, who can speak better than me.
Dr:  “I have spoken with a lot of patients who have Alzheimer’s and none of them sound like you.
Me:  “were they older than me?”
Dr.  “considerably yes, but that shouldn’t make a difference.
Me:  “I have to agree with you for I also know a number of people who are older and further along on their journey and you are correct, they don’t sound like me and I don’t sound like them.
Dr:  “I would like you to get tested again. I’m going to send you to
 Dr. XYZ, a Neuro-Psychiatrist. He is very well-known in this area and is an expert in his field.
Me:  “I have been tested 4 times.
Once by a Neurologist who didn’t know what to do with me, so after diagnosing me with Alzheimer’s Disease, he prescribed Aricept and Namenda which only gave me very bad side effects. After that, I never saw him again.
I was then diagnosed by 2 different Neuropsychologists. I had to be seen by them in order for my Social Security Disability Insurance to be approved. Both Neuropsychologists diagnosed me with Alzheimer’s Disease. During the second diagnosis procedure, I had to listen to the person who was administering the test tell me time and time again, “it’s OK honey, don’t be frustrated, even normal-brained people can’t do this!”
Finally, I was diagnosed by Dr. XYZ. Now, correct me if I’m wrong but you want me to revisit Dr. XYZ, the one you called “The Expert Neuropsychiatrist”. He was actually the 4th and final Dr. who ALSO gave me a diagnosis of Alzheimer
 ‘s Disease. Is that correct?

(I do want to say that since my Triple Bypass Surgery, I have more oxygen and blood going to my brain which has not only helped me retain information but also regain some of my short-term memories. This is why I am able to recall so much about this visit)

Poor guy, since he was unable to speak after hearing of my Neurological Diagnostic Journey, I decided to fill the quiet void.

“Since you have informed me of your expertise in diagnosing individuals with Alzheimer’s just by the way they speak, I would like to share with you “MY” expertise.

Shortly after I was diagnosed in 2014, I became an Alzheimer’s Advocate and Keynote Speaker. Since then, I’ve become an International Alzheimer’s Advocate where I speak throughout the United States as well as Canada.
(shout out to my Canadian friends . . . Eh?)

The topic of my talks vary depending on the venue, but the constant will always contain my lived experience with Alzheimer’s Disease. How do you think I’m able to talk about this topic if I wasn’t actually living it? I have people come up to me after my talks and thank me for explaining things I go through for I explain things their loved one can’t explain because they no longer have the capability to do so. I, and others like me, have become their voice. None of us living with a Dementia-Related Illness take this lightly.

For you to sit there without even taking the time to look at my file before walking in here and then start making accusations that I don’t have a Disease I have been living with for quite a while, is not only unprofessional but downright cruel. This disease robbed me from working, took away the ability to provide for my family, took away memories, made people who I thought were my friends disappear and many other things associated with having a Disease that is not only invisible but so very, very cruel.

Another topic I speak about is Stigmatism and the people that tend to stigmatize us just because we still look normal for the most part. They expect anyone who has a Dementia-Related Illness to go from diagnosis to late stages, to not be able to walk, eat, bathe, go to the bathroom and many other things without assistance. Oh, and they can no longer speak. So, in order for you to believe I have Alzheimer’s, I have to appear to have all the characteristics I just listed. Then and only then would you believe I have Alzheimer’s, without sending me for a 5th diagnosis.

Today, YOU became one of the people I speak about . . . A STIGMATIZER!
Today, YOU have become part of my story.
Today, and from this point on, YOU, a Neurologist, will be spoken about as to how you stigmatized a person who is living with Alzheimer’s Disease just because he didn’t fit into your medical mold. (out of respect, I have not and will not reveal his name.)
Lastly, TODAY, if it hasn’t happened before, you will see THIS person, who you stigmatized, walk out of this office and NEVER return because of your unprofessional, cocky and disbelieving attitude.

My hope is you get more education and more training as to how not to insult another individual who walks through that door just because you have an opinion as to what they should look and sound like. I think you need more training.

And yes, I did walk out, not slamming the door but closing it hard enough to make a point. (It would’ve so much better if I could have just kept walking but, I had to stop and ask directions as to how to find the exit.)

I sincerely hope NO ONE has to go through this type of experience. I know quite a few Neurologists who epitomize what a Medical Profesional should be. That is what I am hoping my next Neurologist will be. In the meantime, if you have an experience like I had, don’t be afraid to speak up and call them out. If we don’t, they will continue STIGMATIZING other individuals just because they don’t fit the mold.

Until Next Time,
PEACE

B

 

10 thoughts on “STIGMATIZATION Strikes Again

  1. What a fabulous story, Brian. Congratulations on that great finish in his office. Your having to get directions to the exit brought to mind an experience with my former neurologist. He was in a new office so when I stood at his door to leave, I looked out, saw nobody and was completely disoriented and somewhat scared. I whimpered, “can someone help me get out?” Getting up from his desk, he was laughing. To this day I am overwhelmed with his dismissal of me and his arrogance, which is why he is former. Take care, Brian (from Canada)

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  2. Thanks Brian. I am sorry for your experience, but so happy to hear a story that is so similar to my personal experience. Like you I have been diagnosed with a Dementia related illness, in my case fronto-temporal degenerative disease. Like you, I can still speak for myself, although much of my everyday function is failing. I visited a Geriatrician in the hopes of receiving some suggestions to maintain some of my failing physical functions that my neurologist continues to ignore, and was basically insulted by this doctor who informed me that as far as he was concerned, would not have given me a dementia diagnosis, until I could no longer describe what I could and couldn’t do. I pointed out that as I live alone without a carer, his suggestion would mean that, in his world, no-one would ever know my experience and capacity.

    Like you, I too speak out for those who have lost their voice, and intend to do so for as long as I am able. This results in condescending pats on the head by members of the medical profession who continue to tell me not to worry, as I am doing so well. Maybe I am doing well compared to someone in late stage dementia, but I’m certainly not doing well in relation to what I was able to do last year, last week, or yesterday, but apparently that doesn’t count!!!!! Yes, I am angry but more than that I feel disappointed and let down by the medical profession, as a whole.

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    1. Brian, it is because of seeing and hearing you speak at the Rally in Tally earlier this year, which was shortly after I was “diagnosed” and participate in a blind study, that I overcame the stigma. You continue to be my HERO!. The experience you describe, ring bells to me.
      I too recently visited a Neurological Psychiatrist and as a result, had a 6 hour memory test. The results, “I am right where I should be for a 72 year old man.” I was referred to a Neurologist. After a half hour he told me the same thing, I don’t have Alzheimer’s, that I was suffering from anxiety and depression. He never read a thing I had sent to him before my appointment, including the results of the Scans. This time last year, I had an Amyloid PET Scan, tau protein PET Scan, and a spinal tap. All identified an irregular concentration and accumulation of plaque. As a result, I was diagnosed with Mild Cognitive Impact (MCI) as a result of Alzheimer’s. I will have the same Scans next month for the Study that I participate in. My questions were; why do I have foggy days, forgetfulness, inability and difficulty doing things I have done all the time during my life, uncontrollable emotions including anger, crying, confusion, uncertainties, getting lost, searching for words, losing my train of thought in the middle of a sentence, can’t spell words which used to be simple words for me. The same comment you receive that people can’t believe I have this disease and told, “You don’t look like you have Alzheimer’s, or, ” You’re very articulate when you speak.” Similar to you and since my experience in Tallahassee and at the Forum in DC, I am an Advocate for Public Policy, a Community Representative with Programs, a Team Leader/Captain for “Walk to End Alzheimer’s” plus I have joined another “Walk” close to home. Most recently, I’m an Advisor for the “Early-Stage National Advisory Group.”
      Realizing this disease is extremely difficult to diagnose, the medical professionals need to learn more and understand dementia and Alzheimer’s.
      Thank you again for your Spirit and continued advocacy for this difficult disease.

      Please read Brian’s story below. It encouraged me to write mine. Tap on STIGMATIZATION.

      Thank you EVERYONE for your support and the support to this disease

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  3. {{{{{gentle hugs}}}}} for you. That is quite a story.

    I am saddened that you had to go through all that with that doctor.

    Thank you so much for continuing to be such an inspiration.

    Blessings

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  4. All I can say is Bravo Brian! I once spoke to a Dean of a nearby Medical College and he told me that his students didn’t have time to learn about Dementia (“they have a very full schedule”). This stigmatization irks me and all those involved. That Dr. should have learned from that experience—apologized and thanked you. On behalf of all you’ve touched and will touch, thank you and God bless you!

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  5. Hey Brian, I have been very appreciative of you sharing your journey. I am a caregiver for my mom with vascular dementia and have several dementia folks I check in on to get insights on how better to care for my mom. You are one of them.

    I had a post this week letting other caregivers know that social media is a great way to find folks living with dementia, which is a super educational resource for us. I included you blog. You can find the post here:
    https://www.stumpedtowndementia.com/post/know-your-enemy

    Thank you for sharing your experiences. I’ll keep checking in to improve our journey through yours!

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