Living with FTD-Frustration of Diagnosis and Support for FTD Patients

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I am going to be writing more posts on what it is like living with FTD in the near future.  This morning, I want to talk about a particular frustration that I share with some other people who have FTD as well as people whose loved ones have FTD.

The “typical” FTD patient according to most medical literature exhibits personality changes, “acting out behaviors”, denial and lack of insight about their illness.

In reality, symptoms of FTD can wildly vary among people who have the disease.  FTD is hard to diagnose because a person with FTD can show symptoms before actual brain damage shows up on an MRI or brain scan.

Even people who have typical symptoms often will be misdiagnosed as having psychiatric problems and spend valuable early years under the treatment of a psychiatrist and taking psych. meds that actually may make their FTD worse.

Most neurologists do not have the training to diagnose FTD.  People with FTD usually “pass” typical neurological examinations.  Thus, the neurologist tells the patient that he or she cannot find any neurological abnormality that explains their symptoms.

I have many FTD symptoms but as I mentioned above, I do not have the typical symptoms that doctors use to screen for FTD.  I’ve had unexplained neurological symptoms, anxiety, depression and increasing apathy towards activities of daily living for the last five years.

My husband and I went through Dante’s Medical Inferno trying to obtain diagnoses for my other illnesses (RSD, abdominal migraines, Celiac Sprue, Meniere’s Syndrome, etc.) I’ve met some physicians who belong on the inner rings of hell but after years of struggle I finally met a few doctors who are good Samaritans.  You will know when doctors get their angel wings every time that hell freezes over.  Okay I’m joking, sort of.

I was admitted to the hospital for unexplained neurological symptoms.  The neurologist came in with a gaggle of baby docs, did the usual neurological examination and said what so many have said before, “I don’t know what is wrong with you.”

My husband, a battle worn veteran of diagnostic warfare and physician retreat, requested that the neurologist order an MRI of my brain.  The neurologist complied.  Most doctors are willing to order an expensive test.  Why not, if the insurance company pays for it and they can be rid of a difficult case that could potential cost them time, money and liability by using  the authority of  The Test that will certainly show something if there is actually something wrong.

My MRI was consistent with FTD/shrinkage in the frontal and temporal lobes on the left side.  The neurologist had his own opinion.  Although he knew nothing about FTD, he told me that FTD was rare and I did not exhibit the symptoms so he was sure that I did not have FTD but I should follow up with another neurologist.

If, I had not been a professional patient then I probably would have gone to another neurologist who knew nothing about FTD.  I would have continued having greater difficulties with anxiety, depression, loss of speech.  When I started having auditory hallucinations then I would have probably been referred to a psychiatrist and  put on psychiatric medication that might make my FTD even worse.  My family totally baffled by these developments as I became incontinent and unable to speak would be advised by friends and the family physician that it was probably time to put me in a nursing home.  I might have died not ever knowing I had FTD.

As I mentioned, I belong to an FTD support group.  They are a really nice group of people almost all caregivers that provide a lot of good information and are very supportive to whoever joins the forum.

I am glad I found this group.  I can’t go out to a support group and there aren’t really any other FTD support groups online.  As the months passed, I discovered as many people do who have chronic, serious or terminal illnesses that I really wanted to talk to others who also had FTD.  It is great to have supportive friends but sometimes when your in this sort of situation you really want to talk to someone who is  down there in the trenches sinking in the same mud.

Fortunately, I met a very brave and compassionate woman who has FTD.  She’s made a documentary about families coping with FTD.  She invited me to a weekly chat group where I eventually met six other people with FTD.

Most medical literature says that the hallmark signs of FTD are acting out, personality changes, denial and lack of insight into illness.  Another FTD “researcher” told me despite my solid proof that I did indeed have FTD diagnosed at Johns Hopkins that I could not have FTD because of did not have these “hallmark” symptoms.  He told me he had reviewed 2000 cases (I later found out not actual people but autopsy slides of people) and all of them had the “hallmark” symptoms.

It is a fact that I have met a total of seven other people who have FTD, are able to communicate and have insight into their illness.  I realized if there are eight people who have FTD who did not have the classic early symptoms of FTD that neurologists use to screen for FTD then there are probably many people living their lives that are progressively becoming more difficult that don’t realize they have a terminal degenerative brain disease and they might have only a few more years to live.

This possibility really bothers me.  Most people who have terminal diseases have some forewarning even if it is a short period of time to say what they want to say to their loved ones and get their affairs in order.

No one knows when they are going to die and many people die in accidents.  Still it bugs me with all our modern medical technology that there may be thousands of people out there who don’t know that they have a devastating terminal illness.

Since most recognized FTD patients are unable to express their needs in a functional manner there is not the kind of support for FTD patients that there is for people with other terminal diseases.  Support for FTD on the Internet is primarily focused on caregivers.  I certainly agree that they need much  support but I think there should be more support in the medical community for FTD patients including those that are unable to communicate their needs.

Since FTD ,until recently, has been considered a rare disease even by FTD specialists, there are very few programs set up for FTD patients.  I wished that FTD patients were able to receive the same kind of support that Alzheimer’s patients are now receiving and that there were  more clinics that had programs and interaction for FTD patients.

New research in Alzheimer’s has also lead to new research in other neurogenerative diseases such as ALS, Parkinson’s and FTD.  I hope in the near future that there will be more programs for FTD patients.

Currently, FTD patients are treated with medications for symptoms.  Most FTD patients before they are diagnosed have been progressively having  increasing problems at their jobs and not long after they are diagnosed they end up having to go on leave or disability.  They remain at home with their families until their loved ones can no longer take care of them and then they are placed in nursing homes where they usually rapidly decline.

I have read about a lot of families that are wonderfully supportive and do everything they can to help their loved ones with FTD.  Also the Alzheimer’s Association has support groups for people with presenile dementia that people with FTD can attend.  Unfortunately, I am too disabled by my other illnesses to be able to attend a meeting.

Still, the burden of care and support remains with the families of loved ones.  If people with FTD don’t have loved ones that are able to take care of them and support them, they end up living alone until they cannot take care of themselves and then they are put into the nursing home.

I have not seen one article that addresses the possibility that there may be thousands of people who have FTD who do not know they have FTD because even FTD specialists rarely see “atypical” patients such as myself and the others who I have met who are “atypical” patients so they may not even know “atypical” patients exist.

It is a fact that there are people that have FTD who are able to communicate and have insight into our disease.  There must be others like us  who are probably falling through the cracks because they do not have the “hallmark” symptoms of FTD which are used as a screening tool for FTD.  Perhaps when FTD no longer is labeled as rare by most neurologist, this will occur to some physicians.

I read an article recently in which an FTD researcher speculated due to the new research breakthroughs they are making in discoveries about neurodegenrative diseases that the diagnosis of FTD may end up accounting for 65% of people who have presenile dementia.

I do not wish for anyone to have FTD but the more number of people who can be found that have FTD means larger amount of funding for further research and programs for people with FTD.

If people with FTD were like stars that scatter the universe and I was an angel, I would scoop them all up in my magical net and protect them under my wings.

I am one spiritual being who is having a human experience.  Part of my experience is living with FTD.  I do the only thing I am able which is  to tell people about what it is like living with FTD and giving support over the phone, the internet and always in my prayers.

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15 Responses to “Living with FTD-Frustration of Diagnosis and Support for FTD Patients”

  1. Veronica Says:

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  2. lasik Says:

    Thanks for this excellent read. I liked every bit of it. I linked to this and will be reading again.

  3. Annie Says:

    I, too, believe that there is a whole spectrum of disease under the FTD banner. I believe that my paternal grandfather and grandmother both showed signs in old age of frontotemporal decline. I believe my father started showing signs of decline while I was still a teenager. He made my mother’s life a misery, and when she died, started to act out on me. He made a habit of being gregarious and friendly to anyone – Hail Fellow Well Met, but any relationship that required work and was complicated, he ignored, so his family suffered. He gave everything to prostitutes and still believes that they are his best friends, because his relationship with them is uncomplicated and non-threatnening. After all they do ANYTHING he wants and tell him how wonderful he is. He now has his diagnosis of FTD, is in mid-late stage, and there is little doubt in my mind that he has had decline since the mid-eighties.

  4. Rolando Shenker Says:

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  5. Tina R Says:

    I agree; your article is a excellent and moving read…. For years my mum was labeled as eccentric and eventually through my persistence a brain scan confirmed FTD. The medical professionals had little experience of the disease. We coped with her decline over a number of frustrating years and had little input from the medical profession until recently. As coincidentally my aunt also developed the same symptoms. Here we go again; some medical professionals insisted that my aunt needed to go through down the memory testing route for Alzheimer’s and follow local PCT guidelines? Rather than listen to the family they continued to waste time and money. As we had experience of dealing with the disease we knew the signs and symptoms straight away… They wouldn’t send her for MRI scans as we requested and I am still fighting the system. However I still continue to educate the professionals I meet on the disease but my family is now taking advice from the genetics dept, to which I am very grateful for their intervention as at last I have found someone who knows something about FTD. My mum is now in the end stages of the disease and it’s heartbreaking for us as a family to see her demise, even more heartbreaking to know that her sister will soon follow. But above all; even to the end of the disease I’m still educating the Dr’s even on my mum’s ward as she is dying.

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  8. Polly Jacobson Says:

    Thank you for such a wonderful article. My sister, who is 64 years of age, was diagnosed at Mayo clinic 4 years ago. She has all the symptoms of Lou Gehrig’s disease. We have hospice in place at home and also a faithful caregiver who comes in on certain days.
    It is very difficult for me to see my lovely sister in this state. She is having difficulty swallowing, cannot speak, walk, and is eating baby food. I feel she is locked in this body. I pray for further research on this disease to help others. Thanks again, P. J.

  9. Diana Drew Says:

    I have a father that is sexually inappropriate like Annie’s loved one. He is demanding, aggressive, blaming, critical and relentless that he is always right about everything. He is still found capable to make decisions regarding his care and finances although we help him with everything because he really isn’t capable. The writing is on the wall that he will have a serious accident or run through his entire finances if he is left to do what he wants. We argue with him about everything. He doesn’t make sense anymore and the father I knew doesn’t really exist. This selfish, demanding, abusive person has overtaken his body. This is probably the worst thing I have ever had to deal with in my life. I feel so stressed that it is indescribable. Although I am a cancer survivor (twice), I would say the cancer was less stressful to deal with than what my father is going through. No one seems able to understand or help. My father used to be an entertainer so he puts on a nicer act for strangers and treats his family terribly to say the least. I wouldn’t wish this on my worst enemy. If only he were deemed incapable we could give him the care he so badly needs and he wouldn’t be taken advantage of by certain whores and strippers, etc. It’s disgusting to watch my father go through his late years with this FTD and not be forced to get the proper care. Sad, sad, sad.

  10. Phil Hong Says:

    Hi,
    I am totally sympathetic with your circumstances.
    I was diagnosed with FTD about 2 years ago.
    This was preceded by futile searching with my wife (who has a medical background) because of increasing cognitive difficulties.
    My symptoms are not classic, although like a Rorshach test, you can interpret anything after the diagnosis.
    There is no support group for FTD patients in Denver, just for caregivers. I do go to an Alzheimer’s support group.
    If you know of a way to contact a support group for patients who are aware of their disease, are intelligent and willing to discuss personal feelings and observations, please let me know.
    Probably on-line is best because face-to-face requires transportation, etc.
    Thanks,
    Phil

  11. Howard Glick Says:

    Hi,
    Excellent article. I totally agree with what you’ve written and am familiar with much of what you’ve discussed. I have FTD as well and was diagnosed about 2 years ago. I started a private, confidential online support group for FTD patients. It’s called the FTD Patient Support Group. It’s on Facebook and we have 42 members. We are all functioning at different degrees with many of aware of our illness and looking to continue our life with happiness and purpose for as long as we can. The group is upbeat and has close ties with AFTD for accurate information. You are welcome to join our group if you like. Some of the other FTD’ers you know are already in the group. We have people from 8 different countries in the group. You can join the group by “friend” me through Facebook. I’m the Howard Glick under the Starbuck sign or you can email me with any questions you have. For more information on the group, you can Google FTD Patient Support Group.

    Best of luck. You are not alone.

    Howard Glick
    howardjglick@gmail.com

  12. charlotte melton Says:

    Hi,
    I have a 56 year old sister with FTD. She has had it for about 2 years. I just had to put her in Asst. Living because she can no longer take care of herself. It was the hardest thing I ever had to do . I fought of 8 months for someone to diagnose her UNC Chapel Hill did they have be great. God Bless each care taker an family member that has to deal with this.

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  14. mearf Says:

    Hi, this is Phil Hong. I last replied in Jan. 2012. This is an update.
    My last comment was followed by a post by Howard Glick about a private Facebook group he started for FTD patients only. I joined the group and have nothing but praise for it. There are at least 50 members and most understand the variability and complexity of FTD.

    The dialogue can be insightful, humorous, knowledgable and above all sympathetic and empathetic. I heartily recommend it for all those who have FTD, especially early-mid stage. To join, Email Howard at howardjglick@gmail.com and either he or an administrator will contact you.

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