In early 2022, my father was hospitalized for 15 days. When we learned his unexplained behaviors were due to behavioral variant FTD. The hospital would not release my father unless he had 24/7 supervised care. So my husband and I welcomed him into our home. We had never heard of bvFTD before and were left scrambling on how to meet my father's needs. The AFTD provided us with a wealth of information and support in navigating this awful disease. Their website, hotline, and FB group has proved beneficial in understanding this disease and how to approach my father's care. Having a community of support has helped me feel less alone in caring for my father. Without the AFTD, this caretaker road will be much rockier. I am grateful for their service to this community. - Kimberly Shaw, current FTD care partner for her father
Over the past five years I struggled to understand the behavioral changes my husband was exhibiting. He felt great, but life was becoming utter chaos. It was like suddenly waking up with a different spouse after 38 years together. Due to Covid restriction, my husband's doctor only knew my husband's world view, and he was living life in the fast lane and loving it.
Compulsive behaviors spun out of control. Issues that exceeded my imagination from nearly a dozen speeding tickets, to ransomware attacks on our laptop, to visits from the local Sheriff's department that resulted in court hearings, screamed, "Something is wrong!" He insisted everything was fine, until the judge at one of his hearings nearly sentenced him to three months in jail. Fortunately, after the attorney interceded, she reconsidered and allowed a one month continuance to seek medical assessments.
After an expedited appointment, and months of testing, the initial diagnosis morphed from early onset Alzheimer's to possible FTD to probable FTD, to probable FTD/ALS. When FTD was identified, my husband's primary care physician called and referred Larry to Johns Hopkins and referred me to theaftd.org. His exact words were, "You must visit this website and call these people immediately. They will help you. Do NOT try to go this way alone." I have been so grateful for this advice and for all the help I've received from the aftd.org along the way. When I called one day distressed about the physical symptoms I was witnessing; choking, tremors, and writhing / twitching muscles ( fasciculations), the volunteer at theaftd.org offered to send me a webinar on the overlap between FTD and ALS. My eyes teared through the entire presentation. It was not what I wanted to hear, but the accurate information I received gave me the knowledge I needed to effectively advocate for him. Nine months after the initial appointment, he was diagnosed at Johns Hopkins with the behavioral variant of FTD and ALS, bvFTD/ALS.
Without the help we received from the aftd.org, I'm not sure we would have been able to navigate the medical, legal, financial and emotional nightmares of the last year. My husband's symptoms are progressing rapidly and it is painful to watch, but miraculously, he is still my husband and we still love each other. We are going on this unexpected journey together, but we are not alone. The afttd.org has been right beside us through all the rough terrain. We are eternally grateful for their compassionate support.
There are so many families affected by FTD and it's variants. The younger the family, the greater the financial burden and the more complicated life becomes, especially for those with children. The help offered by theaftd.org is priceless.
In early 2008, my sister Lee, a vibrant, healthy mother of two adolescents and talented elementary school teacher was showing early symptoms of aphasia, struggling to get the words out of her mouth that were in her head. Of course, at that time, we had never heard of a condition called aphasia. We just knew something was not right with Lee. In July, when Lee was complaining of headaches and the speech pattern was getting worse, we made a trip to the emergency room. The CAT scan ruled out a stroke, but the doctor said, "It does appear that there is some atrophying of the frontotemporal lobe - you should get that checked out." What?!! What do you mean atrophying? What does that even mean?
Many months, and many trips to Columbia-Presbyterian's Neurological Institute, later, we had a diagnosis of Primary Progressive Aphasia and Frontotemporal Disease. But again, What?! What does that mean for Lee, and her husband, and kids? Is there a treatment, a cure, some help? Where do we turn? So many questions!!
It took us a couple years to find this organization called Association for Frontotemporal Degeneration (AFTD), and begin to get answers to our questions. The website at that time was useful, but the real help came when we attended one of the Educational seminars sponsored by AFTD. We learned so much about the underlying causes, research, efforts to identify and just start naming the condition that had been called "early onset Alzheimer's" for so many years. We learned about research efforts and clinical trials, support groups for Lee, her husband and her kids. AFTD suggested we host a workshop for friends in which we could explain what was happening to Lee, and educate the public about this disease. Being able to name, describe and explain was a way to try to gain control over something that seemed so utterly uncontrollable.
Over the next 3-4 years, spouses of work colleagues received a similar diagnosis, and experienced the same earth-shaking disquiet, and began asking all the same questions. We could not give them much good news, but we could actually refer them to an organization that could give them pertinent, reliable and current information. Beyond the information that was available on the website and the educational seminars, AFTD is sponsoring research to "fight this disease (ftd)," AND they connect caregivers with critical support.
Our beloved Lee slowly disappeared from us over 14 years, and passed in 2022, but AFTD was there through that entire journey providing whatever support they could. Some of it we used, some of it was not for us, but it was important for others. We have no doubt that AFTD uses every penny of our donations wisely and supportively for the families that are devastated by this disease. We are truly amazed at how much progress AFTD has been able to drive and support. In terms of an organization that is financing research, advocacy and patient and family support to combat a disease that is ravaging far too many families, I cannot imagine how AFTD could do a better job.
Please support this organization!