5 years after diagnosis of Frontotemporal dementia

[Omaha Steve]

Uploaded on Jan 12, 2012
5 years ago my husband Dave was diagnosed with FTD. This video is "life through his perspective". It helps me to make some sense out of this unpredictable and mysterious condition called dementia. For more stories/blogs/articles please go to: www.hollyeburne.com

I'm still driving after 2.25 years from diagnosis! My specialist last week said I'm doing so much better than my original projected curve!!!

http://www.theaftd.org/life-with-ftd/managing_symptoms/driving-privileges

Getting your loved one to give up the car keys can be one of the most difficult things a caregiver must do. For many people, driving has been a powerful symbol of independence from the time they were teenagers and got their first license. It can be very distressing when limiting that independence becomes necessary.

Receiving a diagnosis of frontotemporal degeneration need not mean an immediate end to driving. In time however, everyone with FTD or any other degenerative neurological disorder, will become unable to drive. The characteristic behavioral changes associated with FTD can increase risk, and highlight the importance of caregivers getting involved early. People have reduced judgment and are typically unaware of the changes they are experiencing.

A study conducted in 2007 by a team of researchers at the National Institute of Neurological Disorders and Stroke (NINDS) evaluated the driving competency of FTD patients and healthy controls in a driving simulation task. The FTD patients received more speeding tickets, ran more stop signs, were involved in more accidents, and had a significantly higher average speed than the controls (de Simonea, L. Kaplana, N. Patronasb, E.M. Wassermanna, J. Grafmana 2007).

Caregivers share in the responsibility for the safety of the person diagnosed and that of others who may be at risk if the person continues to drive when no longer safe. Caregivers need to excercise their own judgment, as well as heed the advice of their physician, when it comes to “taking away the keys.”

Guides and Resources

Evidence shows driving skills deteriorate with increasing dementia severity. A recent study found that caregivers who rate a patient’s driving as “marginal” or “unsafe” were often proven correct when the patient took an on-road driving test. Patients who deemed their own driving as “safe” were not necessarily accurate in their own assessments. The American Academy of Neurology has issued new guidelines to help determine when people with Alzheimer’s disease or another type of dementia should stop driving. The guidelines were published in the April 12, 2010 online issue of Neurology.

The Hartford Insurance Group, in collaboration with the Massachusetts Institute of Technology Age Lab, has released a guide to help people deal with the issue of driving. The guide, Alzheimer’s, Dementia and Driving, is only available online at www.thehartford.com/alzheimers. While geared to people dealing with Alzheimer’s it still has many useful pieces of advice.

The Alzheimer Association website includes information and tips for how to approach the issue with family members. Go to www.alz.org/living_with_alzheimers_driving.asp.

[Jarqui]

1. My mother started showing symptoms in 2007

My mother had a tough time starting out. When she was 5, she was in a serious car accident and knocked out. Her mother died of cancer when she was 8. She took care of my grandfather who was disabled from war wounds and wheezed to death when she was 15 from the gases in the trenches during WW1.

She moved to her brother's and met my Dad when she was 16. Unknown to us until a couple of years ago, my father's uncle and my mother's father (my grandfather) fought in the same trench at the same time in WW1 -relieving each others company. For all we know, they could have had a bottle of French wine together. So maybe this union was meant to be. It lasted for about 64 years when my father passed.

Between 2008 and 2011, we had a tough time. She was constantly calling the police to report something stolen (sometimes accusing her kids). Finally, we got her building to ask her to move out so we didn't have an ugly family fight to get her into a home.

My mother was terribly up tight for as long as I could remember. Couldn't relax. Depression. She was literally a little crazy. Part of it was what had happened to her. Part of it was being poor and when my father did well financially, she felt that she had to "keep up appearances" and wanted us all to pretend we were something we were not so the neighbors wouldn't think badly of us. For me, it became unbearable bullshit and I left home when I was 15.

She largely remained that way right through into Alzheimer's. Always worried about what people thought. Always on edge. They found some of the cause of the dementia/Alzheimer's and all the issues she had endured was from the car accident when she was five: it left a dead spot in the center of her brain about the size of a baseball. The doctors were stunned that she had functioned as well as she had.

As the Alzheimer's progressed, a remarkable thing seemed to happen. She became more child like which on one hand was sad to see. But the inhibitions, the worries, the depression - all that bullshit she had had all her life ... disappeared. I can honestly say I never saw her happier in my life. She's like this every day. She didn't have a serious care in the world other than her kids (and she just LOVES Obama). We have had a great time with her and we still are.

She gets this horrible illness. There's nothing we can do about it. And it delivers 4-5 amazing, happy years. I'm sure it's a very rare case.

But for those of you who worry too much, hopefully, you'll try to relax a little more and be happy.