5 years after diagnosis of Frontotemporal dementia video

[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!!! But my language skill are dropping.

OS

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.

[Omaha Steve]

1. Kick

[malaise]

2. Have you seen this?

http://www.theguardian.com/society/2016/mar/16/nerve-cell-stimulation-recall-memories-alzheimers-patients
<snip>
Memories banished by Alzheimer’s can in theory be rescued by stimulating nerve cells to grow new connections, a study has shown.

The research, conducted in mice, raises the possibility of future treatments that reverse memory loss in early stages of the disease. Scientists used a technique called optogenetics, which uses light to activate cells tagged with a special photo-sensitive protein.

It was tested on mice with Alzheimer’s-like symptoms that quickly forgot the experience of receiving a mild electric shock to their feet. After tagged cells in their brains were stimulated with light, their memory returned and they displayed a fear response when placed in the chamber where the shock had been applied an hour earlier.

The optogenetic treatment helped the neurons re-grow small buds called dendritic spines, which form synaptic connections with other cells. Although the same technique cannot be used in humans, the research points the way to future memory-retrieving therapies, say the researchers.

Lead scientist Prof Susumu Tonegawa, from the Picower institute for learning and memory at the Massachusetts Institute of Technology (MIT) in the US, said: “The important point is, this a proof of concept. That is, even if a memory seems to be gone, it is still there. It’s a matter of how to retrieve it.”