This blog is to share my story of living with FTD/MND. I was diagnosed with FTD in February 2013 and then with MND in June of 2013. I am fortunate to be involved in a family business and am still able to work on a limited basis. This blog will contain stories about my family, my business partners, staff and friends.

Thursday, May 29, 2014

An Introduction To FTD/MND

This is the first post on my blog and I want to give a big thank you to those who are reading this. I want to give a short introduction on FTD and MND. I think this will help you understand what is going on in my life.

Frontotemporal degeneration (FTD) is a disease process that results in progressive damage to the anterior temporal and/or frontal lobes of the brain. It causes a group of brain disorders that share many clinical features. The hallmark of FTD is a gradual, progressive decline in behavior and/or language that often has a relatively young age at onset (mid-50s to 60s), but has been seen as early as 21 and as late as 80 years. As the disease progresses, it becomes increasingly difficult for people to plan or organize activities, behave appropriately in social or work settings, interact with others, and care for oneself, resulting in increasing dependency.

FTD represents an estimated 10%-20% of all dementia cases and is recognized as one of the most common dementia's affecting a younger population. It is estimated that FTD affects approximately 50,000-60,000 Americans. FTD occurs equally in men and women. In a minority of cases, it is inherited.

While there are currently no treatments to slow or stop the progression of the disease, FTD research is expanding, producing greater understanding of the disorders. We anticipate that this knowledge will result in a growing number of potential therapeutics entering clinical testing within the next few 
years.

In about 10-15% of patients with FTD, the disease also involves the nerve cells controlling voluntary movement, called motor neurons. When this occurs, the syndrome is called FTD with motor neuron disease (FTD/MND) or FTD with ALS.

Patients with FTD/MND may present with the same behavioral and/or language changes seen in other subtypes of FTD. In this syndrome however, these changes are accompanied by a deterioration of motor neurons that manifest as weakness in the muscles with stiffness, difficulty making fine movements, atrophy (shrinkage) of the muscles, and fine muscle twitches and cramps. Muscle changes can affect the arms and/or legs on one or both sides of the body, or the face, tongue and mouth, depending on how the nervous system is affected in that individual. As the disease worsens, more parts of the motor system become involved. Patients with this diagnosis usually experience a rapid decline in both physical and cognitive abilities. The course of FTD/MND may be as quick as 2-3 years, as opposed to the 5-10 year course more commonly seen among other FTD patients.

This information was taken from the AFTD.org website. I hope this has provided valuable insight and now you will have a better understanding of my blog.

Hal