Welcome to FTD/Picks Sufferers Support Group

Hi everyone,
I am just getting use to setting up this forum.  I have tried to do a post to the group twice but I do not see where it is located.  If someone finds it, let me know.  So I am using this first post as a welcome.  If you do find another welcome message please let me know where it is so I can fix things appropriately.

I am 49 years old, married with two children and soon to be two grandsons.  I was diagnosed with FTD in February of 2009.  I also have a complex pain disorder as well as several other diagnoses.  I am disabled and mostly house bound because of my other illnesses.

Early symptoms of FTD which I have experienced include atonia in neck with head falling to the right, speech difficulties with trouble finding right words and flare ups of involuntary one syllable sounds, increased anxiety and compulsive thougts, increased depression, slight increase in lack of judgment, feelings as if I am distanced from everything else by a glass wall, occasional confusion regarding location, balance problems, difficulty doing math, hyperorality meaning increased desire to eat especially sweet foods, more tendency towards compulsive behaviors such as recently spending two hours looking for people to friend on facebook who I hardly knew, increase in creaitivity (this doesn't sound like a symptom but it has been noted by doctors), apathy towards grooming and activities of daily living, inability to deal with financial issues, increased sleeping, vivid nightmares with physical reaction, ocassional increase of thoughts of paranoia, compulsive involuntary movements of hands and head, weight gain, atypical seizure like activity without diagnosis of seizures.

"Typical" early symptoms as reported by most doctors not included in my symptoms:  change in behavior, acting out, selfish actions, poor judgement, increase spending, apathy towards people, increased temper, shop lifting, no insight into condition, not understanding that self is actually ill, incontinence, major episodes of increased anxiety, depression, paranoia and errors in work noticed by co-workers.

Diagnosis:  Diagnosis is usually made by brain MRI, PET Scans and Neuropsychiatric evaluations.  For more information on Diagnosis see FTD Support Forum.

Treatment:  No known treatment for fTD.  Treatment is focused on individual symptoms.  Research is being done as nasal oxycontin for a treatment for FTD but it is still in trial stages.  Also doctors are prescribing different neuron protective medications such as Namenda.  People often seek pyschological, spiritual and family counseling.

Prognosis:  There are 7 known variants of FTD.  Some are heriditary.  FTD has a connection with ALS due to defect on same gene.  FTD affects reasoning, speech and judgement, ALS affects motor control.
It is often difficult to find out which varient a patient may have and even if you discover the varient it does not assure course of disease.

FTD was thought until recently to be a rare disease.  It is being found to cause many cases of presenile dementia. Many people who have FTD are not diagnosed until latter stages of the disease.  I think this is because people with "normal" symptoms usually spend the first years seeing a psychologist or psychiatrist and people such as me who are labeled atypical by some physicians do not have usual psychiatric symptoms and personality changes of initial presentation.  So, I believe there are many people who are unaware that they have FTD and without "typical" presentation, neurologists don't consider FTD as a possibility.  These people are not diagnosed as having FTD until the late stage.

As FTD progresses people will have aphasia, difficulty speaking and eventually become mute.  Caregivers who are able to provide time and detailed attention to fixing communication problems or have resources to hire someone to work with patient are often to surprised to find that their loved one still understands most of what they are saying.

My husband has experience taking care of a post stroke patient ini his home.  He has developed methods of communication he intends to use with me and will be doing further research about new communication devices which I will pass onto people in the group.

I attend a weekly Wed. evening chat session at the FTD Support Forum for people who suffer with FTD and are able to communicate and discuss their disease.  If you would like more information about that, contact me.

I am not very technical so I welcome any help "fixing" this site.

I have read that average time of survival after diagnosis of FTD is 3 to 5 years but as I said people are often not diagnosed for many years.  I have met some caregivers who loved ones have had FTD over 10 years after diagnosis and there isn't any way to tell about the course of the disease at this time.

If you have FTD and are able to communicate then I hope you will join me in this group.  If you think you might have FTD or you think your love one might have FTD, please feel free to join us.

Communication and discussion is encouraged.  Dealing with FTD is not pleasant so feel free to speak frankly but use appropriate language.

I am looking forward to starting this group.
Mersilkee