New Diagnosis

We have been to doctor after doctor over the last 8 or so years, trying to figure out what is wrong with my mom and how to manage it. From the early days when psychiatrists told us it was bipolar disorder or delusional disorder, to the period where we were told it was mania and other associated disorders, to her diagnosis of dementia and finally early onset Alzheimer’s. If I’ve learned anything in this, it is that psychiatric disorders and diseases of the brain are hard to diagnose, hard to treat, and hard to live with.

We have a neurologist that I really like and trust these days. She’s smart, she’s matter of fact (even when it isn’t good news to have to hear), and she really seems to want to know and care for my mom. What more can you want, right? And she has a new diagnosis for us now, Frontotemporal Dementia. And when I came home and started to do my research on the web about it, reading the list of symptoms was like reading our history over the last decade. It was the first time I’ve felt like we really had a diagnosis that fit. And there’s no cure, there’s no test for it and no way to definitively diagnosis it while she’s alive. But it feels like the right thing. And that’s a lot of what you go on–what feels right. A lot of what you learn to live with in this is the ability to live with uncertainty and make the best decisions you can without ever knowing the right answer. You just move on what feels “righter” than wrong. And this feels the “rightest” of anything we’ve heard before. It doesn’t change what we do or how we love and care for mom, I know. But still it is a HUGE relief to feel like you finally know what’s wrong…even if there is nothing more you can do about it.

Symptoms of Frontotemporal Dementia

Behavioral changes:

Can’t keep a job

Compulsive behaviors

Inappropriate behavior

Inability to function or interact in social or personal situations

Problems with personal hygiene

Repetitive behavior

Withdrawal from social interaction

Emotional changes:

Abrupt mood changes

Decreased interest in daily living activities

Failure to recognize changes in behavior

Failure to show emotional warmth, concern, empathy, sympathy

Inappropriate mood

Not caring about events or environment

Language changes:

Can’t speak (mutism)

Decreased ability to read or write

Difficulty finding a word

Difficulty speaking or understanding speech (aphasia)

Repeat anything spoken to them (echolalia)

Shrinking vocabulary

Weak, uncoordinated speech sounds

Neurological problems:

Increased muscle tone (rigidity)

Memory loss that gets worse

Movement/coordination difficulties (apraxia)


Other problems:

Urinary incontinence

4 comments on “New Diagnosis

  1. Debbie brown says:

    Matt, thanks for the new information. So glad you feel comfortable with the current psychiatrist, even though her diagnosis is not encouraging. I think about you, Joe and your Mom and know how tough this journey has been. Wish I was a little closer to help in some way. You two have done a wonderful job addressing such a tragic situation and taking care of your Mom. She was always so proud of you two! Take care.

    • mymomkathy says:

      Thanks Debbie. You’re someone who can appreciate how much knowing what the symptoms were/are and what the diagnosis is, that there is comfort in knowing, even if there isn’t anything we can do to fix it. One of the things this neurologist consistently tells Joey and me is that we are doing everything we can. I just think of all those years when we wondered what we were supposed to be doing and feeling like it was never enough. There is really a lot of comfort in knowing, and certainly when you compare it to how we all were in the early, awful days. Joey and I are really appreciative of all that you have done and that you keep us in your thoughts. It’s been a long haul and we owe you and Paula much for your support. love, m

  2. Donna Nester says:

    Hello Mat, I just wanted to let you know I follow your site, and have been along time. I pray for you and Joey and Kathy. You are a wonderful Son! If there is any way Brad and I can help let us know. We will keep you all in our prayers.
    304 744-5279

    • mymomkathy says:

      Thanks so much Donna. Glad I have a way to keep you up to date on how things are going. Joey and I have a system down and are really happy to be able to live close enough that we can lean on each other for support. i appreciate the love and prayers you send our way! Say hi to Brad and the family for us.

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