Deb Jobe refused to let an early diagnosis of posterior cortical atrophy keep her from living a fulfilling, joyous life. She shares her journey post-diagnosis — and some words of encouragement to others about seeking out early intervention.
At 53, Deb Jobe was diagnosed with a rare variant of Alzheimer’s that specifically targets her visual system and first experienced symptoms at her workplace in the Human Capital Management Industry. As the disease progressed and her cognitive processing abilities declined, Jobes decided to pivot her life away from work and towards counseling, treatment, long-term planning, Alzheimer’s advocacy, and pursuing a day-to-day routine that brings her joy.
As a part of Being Patient’s LiveTalk series, Jobe speaks with Being Patient about her early diagnosis and response afterwards, symptoms of Posterior Cortical Atrophy, and what others living with the disease can do to grab the reins of fate and steer themselves with hope and purpose while living with Alzheimer’s.
Being Patient: You had your first diagnosis in the early 50s. Tell us how symptoms started to present themselves?
Deb Jobe: I was 53 when officially diagnosed. My husband said I probably started about a year and a half before that. I worked in the human capital management industry and worked with Global Managed Care Space which is a very large Fortune 100/Fortune 500 organization. As their Customer Success Manager, I was responsible for the overall success of the onboarding and the information implementation of the products, and they were your payroll, benefits, wherein we actually built the system behind that on the back-end.
I was one that I always strived to excel and be at the top of my game. However, I found myself struggling to learn new things. I would ask the same questions over and over. I would be in the middle of a meeting, or a governance presentation, with people ranging from the CFO to managers, and I would just lose my train of thought. I couldn’t answer a question, or the words would come out wrong, or my eyes and my brain were incorrectly interpreting something completely different and way off from what it should’ve been.
More so, I’d look at something and it just wouldn’t register. I remember my boss one time—and I worked for a wonderful organization with very compassionate and graceful people—would say, Deb, this should only take you like 20 minutes. And I would be there for three hours doing things that used to take me no time.
I’ve been in this industry 30 years and I was constantly forgetting things. My husband would ask me to do something and I’m like, ‘Oh my god how do I do this?’ For example, my husband just wanted me to pull down a measuring tape and I just didn’t understand how to. I’ve had times with the oven, too, where I didn’t remember how to turn it on or how to read it. Things with my eyes would get weird as well: Words turn red on a page.
Another instance where my husband [noticed] there’s something wrong with me: I was like, “John! There’s a hole in our master closet.” What my brain told me was that there was a tunnel, but in reality it was one of those kinds of black iridescent weight scales. It’s not a hallucination though, because the PCA affects the back of your brain. When you take in sight, the eyesight is perfectly fine, but information has to go through the brain and process out what you see, and mine is just “broken.”
Being Patient: So, posterior cortical atrophy, which they call PCA, is the degeneration of the outer layer/cortex of the brain, versus in Alzheimer’s disease, it’s the hippocampus, right? Is that the distinction here?
Deb Jobe: You’re pretty much spot on. They really thought it was early-onset Alzheimer’s at first. My husband thought there was something wrong with me, so he had me go to the primary who didn’t discount it for things like menopause, or my being super stressed at work because we were implementing a very large organization which had the spotlight of the entire organization. So, it was really tough and I needed time off. They sent me to see a neurologist and the PET scan did not come back well. The neuropsych test, which I thought I aced, did not come back good, and I denied it completely. There wasn’t plaque, but there was something that I don’t remember the name of, that was greater on the left than the right and in certain areas. In other words, my brain just doesn’t process glucose like it should, which is indicative of a progressive nerve brain disease dementia.
I was very fortunate in my path of diagnosis, and I’m so passionate about early intervention and about getting to the doctor. It could be so many other things that very rarely end up with a progressive brain disease. I didn’t think it would — it never even crossed my mind.
The spinal tap had conflicting results, and there wasn’t a definitive yes or no, so they referred me to Mayo Clinic in Jacksonville. Mayo then did additional testing and they are the ones that did the final diagnosis. I went to the neuro-psych in May, and by December, I had a complete diagnosis for PCA.
I had no amyloid plaques, which is usually the definitive truth for Alzheimer’s. Based on the location of the atrophy in the MRI. Those two things plus the neuro-psych testing that tests a lot of different facets – all three of them just clicked off all those checkboxes to actually make that formal diagnosis.
Being Patient: Did the doctors explain to you why they thought that this might be a variant of Alzheimer’s versus a whole different type of dementia?
Deb Jobe: That’s a really good question. Typically, their PCA has to have some form of an associated neurological progressive disease. It could be Alzheimer’s, it could be what mine is, called Corticobasal Syndrome.
That was diagnosed because I’m getting more weakness on the right side. I have a leg brace now and can’t walk without a cane. My brain doesn’t really control that part anymore. So that’s the underlying cause. There’s debate on whether or not a lot of times it’s referred to as the “visual variant of Alzheimer’s.”
It’s not very common, as I’ve come to discover and there’s no familial connection. It’s something that people between their 40s to 60s get. As for check-ups and medical experts, I have a couple of different neurologists.
Now, in the beginning, I did check in every three months, because they wanted to see how fast it was progressing and then, it became six months. With the brain neurologist I call, it’s once a year now unless my husband notices some significant changes or something like hallucinations.
Otherwise, number one is counseling. They put me in counseling right away to come to terms with what was happening. I went to cognitive therapy which helped me with memory strategies. The Alzheimer’s Association has some local support groups all over the place. I got an elder care attorney. Get your documents in order! This is all going to bring peace, knowing that your wishes are documented. And also, don’t isolate yourself because it just brings you down that tunnel of depression. And I went through a very serious period of that.
Sometimes people aren’t going to believe it because you don’t look like it. Or tell you that you just need to change your diet or get more sleep or this doctor says they can reverse it. But if that was the case, we wouldn’t be here today. I have hope but take care of yourself. Get some exercise and be social.
Being Patient: Let’s talk a little bit about getting out of that depression because I know that’s really hard and the stigma behind dementia is so life-altering in itself. Talk us through how you dealt with that, and how you got yourself out of that depression.
Deb Jobe: I was a mess for the first six months. I only broke down twice in just gut-wrenching tears. The first was getting the final diagnosis in the neuropathy office. The second was when I couldn’t work any longer because work was a part of me and it defined part of who I was. And I felt like I lost me. And what do I do now? What do I have to live for? But the counseling helped. The support groups know you’re not alone. I got involved in the Alzheimer’s Association from an advocate perspective now that I can no longer work, to be able to share what’s happening and really help people understand. So, the other really big key for me—and I hope viewers have a support system—is family.
I have an almost two-year-old grandson, our first one, who melts my heart. And now we’re back here, with the family and my dad, my brother, my sister-in-law, my older daughter Ray who’s just amazing. She treats me like a child, like she’s my mama. And I have my daughter Heather, and Lucas, and my grandson, Dante, and my stepmom. I am so blessed to have an amazing family because at one point, I really did not want to live. Because I see the stress this causes on my husband. I see just a look of sorrow that I don’t think he realizes he has in his face. Sometimes it’s so hard and I know it’s so stressful. And I’m like I don’t want to put him through this anymore so I really wanted to die. But then my husband and my daughters said, “You have no idea what you would do to us if you ever did something like taking your life. You would destroy us.”
So that was like a click in my brain going, my life doesn’t have to end. I still can’t ride a bike, I can’t drive anymore. But I can speak, I can encourage people. If just one person takes my advice and gets their loved one, their family member, a friend, any concern, get it checked out. There are so many other moderate things it could be. But at least if it is, you can catch that and there is so much that can be done and there is so much innovation now happening with therapies and drugs. I don’t have as long a life as a lot of other people will, but I will watch that little man grow up as long as I can. I will speak. I will live. I will laugh. And I will cry just like everyone else. And, don’t be afraid to go to therapy. It could be a life savior, and there is nothing wrong with antidepressants. It’s not to be ashamed of.
In my first session of cognitive therapy, she put a piece of paper down with the pillars of health: Holistic. How you eat. Sleep. Exercise. Brain games. Socialization. Hydration. I was like, “I thought this was cognitive speech therapy.” She says all of this affects that. It affects you and how you’re going to progress.
Also, I use a lot of the apps that we have — Alexa is my best friend. I also use electronic organizers so I don’t forget to take my pills. It beeps and flashes for 30 minutes until I turn it upside down. I don’t really cook anymore. I got the ingredients confused and I burnt my husband and myself a couple of times. So he puts these laminated signs with a picture and with what it is like, “Dishes are clean. The stove is hot. Refill water. Dogs need to eat.” With whatever situation that comes up, we’re like: “OK, I need to get a card for that. We need to create one for that. And then put it in those places.” Things like using my phone is not a problem because it’s in my long-term [memory], because I think it’s so ingrained and I’ve used technology so much over the last 19 years that it’s still familiar to me. I could probably still put a PowerPoint together. But I try to write things down and do brain games and regular games that make you think.
Being Patient: You obviously went through a hard time after diagnosis, but you’re a positive person, and you sound like you’re making the most out of things. So, what would you tell people to do after diagnosis? What is your philosophy on living with this diagnosis?
Deb Jobe: I think that when I was newly diagnosed, my husband and I were just turned upside down and lost. The neurologist said to contact the Alzheimer Association, who connected us with local resources and support groups. Ask your advocate like your physician or whoever delivered the diagnosis to give you referrals for speech therapy or counseling, which will make a difference.
Also, our financial situation had to change completely. You’ll know what you’re ready to deal with at what point but counseling, the referral to cognitive therapy, and getting local support are the top things that you absolutely should do. As you kind of come to terms with things, then you start thinking about other things, that’s when you probably go more into long-term care planning. We didn’t have a will, advanced medicine directive, anything. Now, at least we have the peace of mind that we do.
Don’t isolate yourself. It’s hard to tell friends. Some of your friends may gradually just fade away but that’s okay, and you’re going to make new ones through support groups. For those activities that you love to do, don’t stop doing them. Please don’t stop doing them because that’s what brings you joy.
Throughout the last couple of years, I was very involved in the Alzheimer’s Association. I’m just finishing my term as one of the advisers for the National Early Stage Advisory Group. So, for me, what makes me feel like a whole person is not just my family but also the kind of work that I do. So, whatever your passion is, do it. Don’t waste time. Something could happen to any of us at any point of time in our life. In the early stages, you have this time to plan and to put these strategies in place. I believe that this is what is helping me continue to live. Of course, I have bad days and there are times that I don’t see anybody or that I can’t even think at all or I can’t remember how to make a cup of coffee. But whatever your faith is, like for me I believe in the Lord. I believe in God. But whatever your faith is, he’s there. Don’t lose your faith.