I am a free special education advocate who helps parents all over the US fight in due process hearings and go onto federal court, if need be, under IDEA. I have been doing due process hearings since January 1985 for children with disabilities and not receiving the special education services they have a right to. Also, because I am a special ed advocate with Gods guiding hand I have been diagnosed since July 2009 with Frontotemporal Dementia (FTD). In the spring of 2009 parents of children, I helped fight the school district were receiving non-pharmacal interventions, cognitive rehabilitation treatment/therapy, neurofeedback therapy, light therapy, Transcranial electro therapy(NOTE: Alpha-Stim approved by the VA for Vets with PTSD get for free) and counseling with a Florida licensed psychologist, Dr. Susan Crum 863-402-2222 were telling her my communications with them were becoming inappropriate (NOTE: I was showing the early symptoms of FTD). Dr. Crum who has known me since October 1988, when she evaluated my 2 children called me and suggested I do a neuropsychological evaluation and a QEEG Brain Mapping and I did in July 2009.

Results I was diagnosed as having Picks, (Frontotemporal Dementia). Dr. Crum informed me there is no treatment and no cure and death will be like having Alzheimer's. I was given a chose go home and prepare to die or do like the children, non-pharmacal interventions, cognitive rehabilitation treatment/therapy, neurofeedback therapy, light therapy and Transcranial electro therapy(NOTE: Alpha-Stim) to try to increase and maintain my functions to permit me to maintain my independents. I agreed to do treatment and therapy 7 days a week to increase and maintain my cognitive functions to permit me to remain independent.(NOTE: I am alone in Florida, all my family at that time are in NY.) I really did not want to go but I did and Dr. Crum’s husband Sam was my therapist and every day, Monday to Friday Sam pushed me to do my therapy and I did it. (NOTE: I was a real pain in the ass and Sam put up with a lot of shit.)

I had an MRI done in early 2010 ordered by Dr. Crum a local Sebring, Florida neurologist that showed no atrophy(NOTE: QEEG brain mapping showed the atrophy July 2009). The neurologist had no idea what is Picks and what Dr. Crum was doing with me. According to the neurologist I was just normal and fine for my age. You need to go to a place like the Mayo Clinic to get diagnosed because the local neurologist may have no idea what you have. But the doctors are only interested in you taking medication.

I went looking for a neurologist on my own calling over 100 in Florida asking if they know what Frontotemporal Dementia/Picks Disease is and one said yes. I made an appointment scheduled an MRI and went to see Dr. Edward Bass, M.D. P.A. Neurology Diplomate American Board of Psychiatry & Neurology 4710 N. Habana Ave. Suite 200 Tampa, Fl 33614 813-878-2800. He did an MRI and it did not show any atrophy. When I saw him in the office he said: “You women have a little forgetfulness and think you have Alzheimer’s. You are fine! There is nothing wrong with your memory.” I said thank you and left. I cried because I believed I needed a doctor, a neurologist more than Dr. Crum who is only a psychologist and I am wrong. Because all that neurologist do is prescribe medication where Dr. Crum identifies which part of the brain is being affected by a brain injury/disease and then using non-pharmacal interventions, cognitive rehabilitation treatment/therapy, neurofeedback therapy, light therapy and Transcranial electro therapy(NOTE: Alpha-Stim) to help the brain maintain and increase its cognitive functions.

It will take until February 2011 for me to get an appointment at the Mayo Clinic in Jacksonville Florida. I had a Brain MRI and for the first time showed “insignificant atrophy” in my left front lob. There I met Dr. Nilufer Taner and when I walked into the room she asked me “Where is the patient?” and I answered “I’m the patient!”, Dr. Taner: “Who is with you?”, Linda: “Me, myself and I!”, Dr. Taner: “How did you get here?”, Linda: “I drove!”. Dr. Taner: “I don’t talk to patients.”, Linda: “Did you get Dr. Crum’s neuro and QEEG reports from July 2009?”, Dr. Taner: “Yes.”, Linda: “What can I do?” Dr. Taner: “There is nothing I can do for you. Come back in a year or two with your caregiver and I will discuss with them what medications you can take to control your behaviors.” Linda: “OK thank you.” And I left went to my van got in then screamed and cursed her out. I thank God everyday I was wearing my Alpha-Stim that keep me calm enough not to tell her off. Dr. Taner made it very clear to me I am a dead person and she is not going to waste her time with me. The only thing she can do is prescribe medication for a caregiver to give to me. Problem is I don’t have a caregiver and not likely to ever have one since I am living alone in Florida.

It is very important to the person with FTD that they have control and say into their condition and therapy. I was lucky I had Dr. Crum and the parents of the children I represented supporting me in doing therapy. I was doing the same therapy as the children and not alone. With the kids I would talk about Play Attention therapy (Neurofeedback equipment you can have at home to do 7 days a week.) on how many gold coins I would get doing the diver and no Octopus ever hit me. I have my Alpha-Stim on all day and how in school the teacher would tell the kid to take it off and I had to call the school and explain: “NO! IT STAYS ON ALL DAY!!!” (NOTE: if they did not listen, we filled for a due process hearing. I don’t play games well with others in school)

I had found the Association for Frontotemporal Degeneration (AFTD) and went to their conference on April 27, 2011in Atlanta, Ga. I saw Dr. Hu speak and I was able to meet him after and told him about my MRI at the Mayo Clinic. He said any atrophy means you have FTD as to my MRI “insignificant atrophy” was the earliest MRI he has ever heard of. (NOTE: he also asked me who I was with and how I got to Atlanta after I told him I have FTD).

I went to the next AFTD conference in New York in the spring of 2012 and meet Dr. Heuy from Columbia University. I go to NYS every year because I am a Peasant in the NYS Renaissance Faire. For 3 years I went to Columbia and did an MRI and saw Dr. Heuy and that was it. No interest at all about what I was doing with Dr. Crum. No input from him on anything I can do to prolong my cognitive function so I stop going to see him.

December 2019 Medicare messed up my getting my insulin and I ended up in a hospital and I had an MRI of my brain that showed moderate atrophy on the left side and insignificant atrophy on the right side and the doctor said I have “normal” brain atrophy for a 67-year-old. This doctor (NOTE: I don’t know if he was a neurologist or a psychiatrist) also said what I do with Dr. Crum is a waste of time and money there is nothing wrong with me and I don’t have to spend the time and money doing all the therapy Dr. Crum was telling me to do.

When I saw actor Bruse Willis come out he has FTD I decided to go get a new MRI and I did on June 25, 2023 with results of: “Since 5/2011 exam, interval progression of Parenchymal volume loss, now mild to moderate, most marked at the level of the bilateral frontoparietal lobes. Likely mild chronic small vessel ischemic disease, subtly progressed.”

I then went to see a neurologist in Lakeland Florida who said he can’t diagnose me with FTD because I show no symptoms of FTD (NOTE: he saw the June 25th MRI and said he does not know how I was there talking to him with that much atrophy) and he had read Dr. Crum’s updated neuropsychological evaluation and QEEG Brain Mapping from February 6, 2023, that states results: “Cognitive Functioning: Ms. Montalbano is a 70-year-old female who completed the WAIS–IV. Her general cognitive ability, as estimated by the WAIS–IV, is in the average range (FSIQ = 109). Ms. Montalbano’s general verbal comprehension abilities were in the superior range (VCI = 120), and her general perceptual reasoning abilities were in the high average range (PRI = 111). Ms. Montalbano’s ability to sustain attention, concentrate, and exert mental control is in the average range (WMI = 92). Ms. Montalbano’s ability in processing simple or routine visual material without making errors is in the average range when compared to her peers (PSI = 100). Executive Functioning: To better understand this individual's strengths and weaknesses it is useful to compare her overall visual IVA-2 attentional functioning with her capabilities identified by the MeSA-AE in attention control and cognitive flexibility. This individual's quotient score on this IVA-2 measure of visual attention was 104 (PR=62) and it fell in the average range. In comparison her MeSA-AE Attention Control Quotient (ACQ) score was 101 (PR=54) and her Cognitive Flexibility Quotient (CFQ) was 107 (PR=69) Her MeSA-AE CFQ scale score identified her to be functioning in the average range. Thus, her cognitive flexibility enabled her to perform well for tasks that required visuospatial classification, working memory and problem-solving skills. Her visual attentional functioning based on the IVA 2 VAQ scale score also fell in the average range. Consequently, this individual was not found to have any specific problems involving either cognitive flexibility or visual attention. Her MeSA AE ACQ scale score fell in the average range which also indicated that she could pay attention well. Her good attention control and visual attention provided her with the capability to perform well on almost all tasks that require visual attention. In addition, she was considered able to reliably and accurately complete more complex and challenging tasks that specifically require cognitive flexibility and other executive control skills. These combined strengths in visual attention and executive control abilities will provide the means for her be successful in the home and work environments.”

I have written AFTD before and have called the office I understand why so many with FTD suffer with apathy when they are told to just wait for the medication that will be the cure and there is little to nothing to stop the advancement of the dementia. I have been told that doing therapy is not a cure and a false hope. I am alive, on no medications to control behaviors and I am an independent adult now 14 and a half years after diagnoses and with now mild to moderate atrophy of my brain. I am seeking out telling others with dementia and Alzheimer doing therapy is not a cure but can help to prolong cognitive function so that you can live an independent longer, quality of life. Can you help me bring out this message to the public.

Linda D. Montalbano
352-282-2539
urania32@hotmail.com