Now I Have 2 Types of Dementia

No, I’m not bragging. I had my 6-month visit with the neurologist on Friday down in Pittsburgh. Even though it was only 20 degrees, it was a nice 2-hr sunny drive. On the way back, we stopped at Pam’s sister’s for a late lunch.

It was quite an interesting visit. Since I was the last patient for the morning, he was more relaxed than usual. And, of course, friendly, as usual. He spent more time than usual discussing and explaining about dementia.

Since I’ve been feeling quite well recently (I told him about the bad 6-8 week spell I had in August), I’ve found myself going into denial again. Thinking that I have been misdiagnosed and that I really don’t have any type of dementia and that its all psychological.

He once again showed me the results of the SPECT scan which I had a little over 1 year ago. He reviewed it and explained it to me. I’ve looked all over the web for SPECT scan pictures. I was not able to find one that looked exactly like mine. But I did find some which show relatively normal and abnormal results.

 

Spect Normal Spect Abnormal

                             Relatively Normal                          Abnormal

On SPECT scans, the colors which are pink, red, orange, yellow are the normal areas. Those which are blue and green are abnormal. The above scans are taken from a different cross section from mine, so they do not represent the same pathology as mine. I posted these just to show the contrast in colors.  

Very baffling to me. How can I be functioning at a relatively high level and have such highly abnormal scans? The majority of my pics were green and blue with a scattering of red, orange and yellow, consistent with frontotemporal dementia (FTD) and Lewy Body Dementia (LBD). He explained to me that individuals with FTD are highly intelligent with a high cognitive reserve which allow them to function in a relatively normal way and not always noticed by others as having anything wrong. He also said that I have the "slow" type which will allow me to go much further in life before becoming totally impaired. (Funny. I’ve never seen myself as all that intelligent. I was what I was and just took it for granted.)

He’s very pleased with the Aricept—Namenda combination and doesn’t want to change the dosages or combination. He also smiled and said that if I wanted to I could now go out and work.

"You’ll never be able to go back and function as a physician, but you could get a factory job or any other type of job which doesn’t involve the complexities of thinking required by a physician."

Now then. I couldn’t believe what I was hearing. Able to work again? That has to be some kind of a miracle, I told myself! But I’ll gladly accept it.

Needless to say, my mind has been racing with all kinds of things I’d like to do vs. what I could actually do given our residential location and driving conditions.

I did check online with the CA disability retirement plan which says that I can work as long as the salary + retirement benefits don’t exceed the amount which I made when I worked full time. Another unbelievable moment. I’m actually going to call them and discuss it on the telephone to make sure I’m not just seeing things.

Needless to say, I am excited. I’ve already started to look online for local job possibilities.

I just wish Pam could feel better and get the same kind of good news from her Docs as well. She’s been done with the pain, dizziness and trouble moving her arm and shoulder. She sees the "brain" neurosurgeon this Friday in Pittsburgh. Then we’ll also follow through with seeing the orthopedic surgeon, the physiatrist and physical therapy.

Some sad news though. I just spoke with a dear family-like friend whose husband suffers from Alzheimer’s Disease. He has now progressed to the point where he literally doesn’t know what "up" and "down" are. She’s finally worn down to the point of anxiety and depression. I gave her some recommendations to take to her PCP which I hope will help. Gil has the same neurologist that I do. He feels that Gil will need to be placed in a facility by this summer. Dorie doesn’t feel that they’ll be able to make it that long. I feel very sad about it. Life is just not fair.

Enough rambling for today. Going to watch some football…

 

Warmly………David

12 Responses

  1. Hi David and Pam,

    What a lift to the spirits to be told you can go to work! A Doctor working at Walmart? Factory? Well, what ever you find comfortable to do, go for it! You are a humble person and can adjust to a lesser job. Hey! If it puts beans on the table don’t knock it. It will help with the medical bills.

    I do pray that Pam will be all right. Sure am looking forward to hearing her report.

    David, thanks for sharing your good news.
    Yours Truly,
    Imogene

  2. I don’t understand the neurologist’s comment: “He explained to me that individuals with FTD are highly intelligent with a high cognitive reserve which allow them to function in a relatively normal way and not always noticed by others as having anything wrong.”

    I can’t believe most everyone with FTD is highly intelligent. Surely FTD doesn’t transform someone into a highly intelligent person or enhance intelligence. Is he implying that only people that are already highly intelligent develop FTD? Seems ludicrous. Would it be more reasonable to just say that FTD doesn’t seem to damage the intellect, and people with FTD have the same range of intelligence as found in the population?

  3. David – There’s enough research around, from Tom Kitwood in the 1990s (See Dementia Revisited) to Rush University’s Alzheimer’s Center (see my 1st book) and beyond showing how people can have the clinical signs of dementia but show no symptoms. One study of autopsied brains (can’t remember which one now) showed that the brains of most older people showed classic signs on autopsy, but only a percentage of them had been diagnosed with it. It was enough to make a senior Canadian official say that total population screening would be counter-productive. Kitwood said that the current understanding was inadequate – that the neuroplasticity of the brain had not been taken sufficiently into account, and the effect on the neurones of benign, or malign biochemical environment. He thought that how we treat one another – for good or for bad, had more to do with it than was acknowledged. This ‘reserve capacity’ is one theory – but there’s no explanation for rementing, that is, when the person apparently regains lost abilities, usually for a short while but in the case of one man, for a whole day.
    There’s more to it than meets the eye, or the scanner…

    Blessings,
    Louise

  4. Congratulations on the good report from your Neurologist!

    It’s great to see you having more good days.

    Sorry to hear about Pam. I’ll hold her in my thoughts while praying.

  5. Hello David,

    Very, very happy to read you are doing so well. Made my day.

  6. I wish you and your family and friends Happiness at Christmas and Peace and Joy in the New Year …… better health for Pam, and strength and support for Dorie and Gil.

  7. Happy Holidays and may you have good fortune and strength in the new year.

  8. Oh David, Praise God for good news!🙂 I’ll continue to pray for y’all – for health, healing, wisdom, and more great news.🙂 Have a blessed New Year!

  9. Hi, David…Happy New Year!
    Great news about being able to work again!

    When I was diagnosed with FTD in 2007, the doctor said that he was very surprised, because I appeared normal. He ordered the PET/MRI because I complained of memory problems & problems locating words. He said ‘due to my superior intelligence, I was able to compensate’.

    Then, last year, I went to a new neurologist. His diagnosis was Mild Cognitive Impairment, due to the fact that even though I had moderat atrophy of the frontal/temporal areas, I didn’t have the symptoms (based on my family’s input).

    I just think there is too much that is unknown about the human brain. So, I plan on living my life to the fullest.

  10. Great post!! I just have to copy it, I have written a blog about dementia too, please come visit my site when u have time ^_^

  11. David, thank you for sharing your thoughts and knowledge. You are so right, doctors and caregivers are the ones that tell us about Lewy Body, which is far from sufficient.

    I read a lot about LBD, books, blogs, articles. Also the open access journals. Still there is too much unknown about the human brain, also about what the ones with LBD experience themselves. Some day scientists will focus on this, I hope. – My sister and Lewy live together, that is why I found your blog.

  12. David, Just checking around. My husband had undiagnosed Sleep Apnea that progressed to vascular dementia. It is all
    too confusing to figure out all the various diagnosis. I am
    doing a blog:
    Dementia: Closer to God http://www.bevhamilton.wordpress.com
    It’s a way of looking at the experience from a different perspective.

    Hope you have a creative journey.
    Beverly Hamilton

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