FTD Patient Story: Natasha Young

* I run a private FTD Patient Support Group on Facebook. It is open to those with a firm FTD diagnosis. The support group is a place where those with FTD can gather in a positive environment and realize there not alone. It's also a source of accurate information which is rare in the quick changing world of FTD. The director of AFTD, Sharon Denny is a permanent guest member. AFTD has been kind enough to open up there medical board to answer member questions. Please email me at howardglickftd@gmail.com to join.

Howard


John Davis -England new member-FTD Patient Support Group

Well after 2 years in the wilderness, not knowing what was wrong, but knowing it was something, I have only been here for a short time, and all ready feel at home. It’s been a lonely time trying to cover up all my mistakes, my confusion, my woolly headedness, trying to talk my way out of situations, getting more and more withdrawn, struggling with communication, putting up with the frustration of it and the outbursts of almost uncontrollable anger, while being passed from pillar to post and being diagnosed with extreme anxiety, OCD and PTSD. Going through CBT and therapies of all kinds and feeling like I was going mad as even making a cup of coffee was becoming a problem. Being able to relate to so many things I have read in the posts on here from you amazing people has made me feel human again for the first time in years. I truly no longer feel alone. Thank you for letting me become a member of such a wonderful community !!

Comments:

Howard Glick Eh, not impressed. Throwing your ass out :-)

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This is the second in our series of patient stories from The FTD Patient Support Group. Natasha Young is an incredibly brave young woman whose spirit humbles me. Natasha started showing symptoms of FTD PPA - Primary Progressive Aphasia at age 22. She is an incredibly strong FTD advocate. Last year Natasha created an FTD-PPA group on Facebook. She helps others learn to live with FTD-PPA and helps them learn how to communicate using speech assistive devices. Natasha also welcomes caregivers, loved ones and the medical community into her Facebook PPA - Primary Progressive Aphasia group.  I've met Natasha and I'm honored to call her my friend. 

There are 3 subtypes of FTD-PPA.  The variants are: Nonfluent, Semantic and Logopenic. Please visit AFTD  for details on these.
Howard

NATASHA YOUNG

My name is Natasha Young and I'm 27 years old. I go to College of Southern Nevada majoring in Deaf Studies. I used to be an Applied Behavioral Analysis ( ABA) tutor working with children with Autism. I was an ABA tutor for 6 years. My first symptoms of PPA started having trouble understanding conversation, forgetting words I knew, having trouble in college, and communicating. Family and friends started seeing these and kept calling mom. Finally, I went to see a neurologist. She did MRI, fMRI, and PET Scan. The PET Scan and fMRI showed PPA in Brock's aphasia. My experience with doctors has been good. Most of my doctors never heard of PPA/FTD or encountered with a person young in 20s. But, I educate them with AFTD and NAA resources. FTD has affect me to work. I no longer work with children with Autism. My family are loving but still in denial. I now relying more help from friends and family then before. I'm using speech assistive device to help me communicate. I was denied 3 times for SSI. Have a lawyer helping now. Last August, I started a Facebook group for PPA. It's called Primary Progressive Aphasia Support Group. I wanted to let people know that they are not alone with this sucky disease. I also want caregivers and speech therapist know PPA. My goal is to keep fighting this PPA, educate, and keep enjoying life.

Wrote a poem that I like to share about my PPA. 

Primary Progressive Aphasia

Primary Progressive Aphasia what is that? What does PPA mean? Is it good or bad? Do I really want to know?

February 8,2011 is the day I will not forget or look forward to every year. It is the day I heard you from my neurologist mouth telling mom and I you. It is the day I felt like being punched in the stomach trying to get my breath back.

Research, research, research goes on for days and days trying to understand you.

Speech therapy, speech therapy for 6 weeks, 3 times a day I go trying to slow you down, learning ways to communicate, and learning how to use my Dynavox that will be my voice.
PPA, I didn't believe you nor do I want to accept you.
PPA, you make me sad. I cry,cry, cry. I hate how you are taking my speech and seeing me struggle to say words correctly. I hate how I see my friends and family sad face looking at me struggle to understand and trying to get my words out of my mind in perfect order. I feel my mind looking for my lost files that I once knew. The world sees me as a stupid person. Yet, deep inside I am smart! I am still Natasha smiling.
PPA, you are helping me help others to fight, fight, fight! You taught me to educate, educate, and educate this world. You taught me to enjoy my life, get closer to my Heavenly Father, and keep on communicating.
PPA, I wish the world would understand and help people with you.
 PPA, I shall never forget you the funny times when words come out funny and the laugh I get. When the time comes where you take over, I hope that you will be cured and the world be understanding and you will not be some strange word coming out of a doctors' mouth.

FTD-PPA

NONFLUENT / AGRAMMATIC VARIANT PRIMARY PROGRESSIVE APHASIA

Primary progressive aphasia (PPA) is a language disorder that involves changes in the ability to speak, read, write and understand what others are saying. It is associated with a disease process that causes atrophy in the frontal and temporal areas of the brain, and is distinct from aphasia resulting from a stroke. In 2011, criteria were adopted for the classification of PPA into three clinical subtypes: nonfluent/agrammatic variant PPA, semantic variant PPA and logopenic variant PPA (Gorno-Tempini, Hillis, Weintraub, et. al).

The presenting feature in people with nonfluent/agrammatic PPA is deterioration in their ability to produce speech. These patients first become hesitant in their speech, begin to talk less, and eventually become mute. Current research suggests that the fundamental loss in nonfluent/agrammatic PPA is deterioration in knowledge of the grammatical organization and the production of sounds for language.

Unlike other FTD subtypes, nonfluent/agrammatic PPA generally does not produce changes in behavior or personality until later stages of the disease. Most people with progressive aphasia maintain the ability to care for themselves, keep up outside interests and, in some instances, remain employed for a few years after onset of the disorder.

Key Clinical Features

•    The aphasia in nonfluent/agrammatic PPA is experienced as hesitant, effortful speech. Despite this difficulty, it appears that patients’ ability to comprehend what others say is preserved longer, though this is eventually lost, as well.

•    Increased difficulty producing speech due to weakness or incoordination – speech sounds weak, imprecise and uncoordinated.

•    Reading and writing abilities may be preserved longer than speech, but these eventually decline, as well.

•    Mutism eventually develops with progression.

•    Difficulty swallowing may develop late in the course of illness.

Neuroimaging studies demonstrate loss of brain volume in the left frontal and parietal areas on an MRI scan and/or decreased neural activity and blood flow, especially in the left frontal lobe on functional imaging (e.g., PET or SPECT scan).

In later stages, clinical features may include ones found more commonly in other FTD subtypes, particularly extrapyramidal syndromes such as corticobasal syndrome (CBS) and progressive supranuclear palsy (PSP).

Key Pathologic Features

Pathology in PPA is most commonly abnormal tau collections (FTLD-T). This abnormality in tau differs from that seen in Alzheimer’s disease. We especially anticipate abnormal tau in cases of corticobasal syndrome, Pick’s disease or progressive supranuclear palsy. Other cases of PPA may harbor TDP-43 deposits (a different type of protein abnormality from tau).

Genetics

Nonfluent/agrammatic PPA can be sporadic, familial, or hereditary. The majority of cases are not hereditary.

Treatment

As with all forms of FTD, there is no cure for PPA, and in most cases its progression cannot be slowed. Physicians suggest targeting behavioral disturbances as necessary (e.g., obsessive-compulsive behaviors, such as hoarding or craving sweets). Some physicians will give a trial of amantadine to ease the flow of speech, but this use has not been proven yet in a formal placebo-controlled drug trial. In one placebo-controlled randomized study, the cholinesterase inhibitor Reminyl (galantamine), significantly slowed deterioration and in some cases improved language function.

Management and Prognosis

Although no studies have shown improvement or slowing of progression, when a patient works with a speech and language pathologist (SLP), many centers work with SLPs to hone the diagnosis of PNFA or semantic dementia and to research potential therapeutic interventions.

Many PPA patients develop the behavioral, social and/or motor complications seen in other forms of FTD. In these patients, prognosis is obviously poorer and management more complicated. Patients who do not develop these additional symptoms are able to preserve their independence and active lifestyle for a longer period of time.

Reference: Gorno-Tempini, M.L., Hillis, A.E., Weintraub, S, et.al. Classification of primary progressive aphasia and its variants. Neurology; March, 2011.

For additional information and support:

The Association for Frontotemporal Degeneration
Radnor Station #2, Suite 320
290 King of Prussia Rd.
Radnor, PA 19087
Toll free: 866-507-7222
E-mail: info@theaftd.org