Moving Forward

Well it has been some time since I was last blogging about our activities. It is hard to believe in just the last few months, our organization has secured an office, produced a charity golf tournament, and hosted a program about FTD for Mind Science Foundation in San Antonio.

It has taken some time to get here, but it is all falling into place.

It is so rewarding when you attend a seminar and doctors come up to you and thank you for making a program like this available. WOW pretty awesome.

We have a long way to go. So much to do...so we will keep pushing forward thanks to so many friends and family.

Everyone that has given money to this organization have help to make this happen. YOU ARE SO APPRECIATED and you are helping to make a difference.

Today would have been my sister Patsy's 62 birthday...still hard for me to believe she passed away at 55 years. So young. I am older than that now.

Thank you all for your emotional and financial support to make this happen.

I plan to get back to blogging...to share my stories and other family stories. Please if you have something to share, share it.

Susan, a Hero Among Us, Fights FTD

When I was first contacted by Susan, I couldn't believe I was talking with a woman living with FTD. Our first conversation was in December of 2008 and I was overwhelmed by her strength and humor.

After what we went through just getting a diagnosis for my brother and sister, I couldn't believe my ears. Could this woman really have the same disease which robbed my brother and sister of their smiles and passion for life?

Susan is funny, smart, and definitely a fighter. She shares her story with doctor after doctor. She was lucky to find a doctor willing to work closely with Susan and develop a large cocktail of drugs which help navigate Susan through her days. Before Susan, I really didn’t see any hope. This disease masquerades as many other diseases in the early years, it is tough to diagnose. I have spoken with so many family members dealing with loved ones suffering with FTD and devastation is always a word used when discussing the disease.

Because of Susan, I see there is hope, lots of hope. Susan is smart, she is a fighter, and she is taking this disease to the mat.

Susan and Cindy continue to work long hours as they approach the completion of the documentary “Planning For Hope”. Most of us will never know the challenges Susan faces daily, and she hopes we don’t…..but if we do, she is leading the way to a better journey.

http://www.ftdtheotherdementia.com/index.html is the website set up to raise additional money for the completion and distribution of the documentary. Every dollar can make a difference, so if you can, please donate.

Susan has been fighting another battle recently, bronchitis. Since her immune system is weaker, she is having a tough time. I am sending lots of prayers your way Susan.

My Brother's Behavior Changes

I was reading http://irenetdjftd.blogspot.com/ and it reminded me of some behavior changes with Michael and Patsy as the disease progressed.

Mom was staying with Michael at the lake and he had become so paranoid about closing the blinds, locking the doors, and not using electric appliances. To know Michael, this was so opposite of his usual way of life, especially at the lake. When healthy, Michael was the cook at the lake. He wanted to cook for everyone and wanted all our guests to be well fed. He loved to hangout under the trees, napping and relaxing while the brisket slow cooked.

The year before his death, he would not cook at all. All he was operating was the coffee maker. He would buy frozen foods like burritos (not warming them, just eating them defrosted) and ice cream. He would walk outside to check on something and would lock the door behind him. He would walk around the house checking the blinds to make sure they were closed tight. If mother opened a blind so there was some sunlight in the kitchen while she cooked, he could grunt and come in behind her in a few minutes and close it.

I remember thinking to myself, was he paranoid because he had been a detective for so long and now he was becoming overly obsessive thinking someone was coming after him. We were reaching for answers, anything that might explain why he was acting so differently.

Michael didn’t like traveling into San Antonio to visit the kids, travel was harder for him. He said he wasn’t as familiar with places as he used to be. He would prefer to be home sitting in front of the TV watching The Price is Right.

Even his TV show preferences changed. He used to love watching golf and the Dallas Cowboys play, but became less interested in those.

Mom would read the paper in the morning and he would get agitated because it disrupted his regular routine. Every morning, he would scan the paper (used to read it, but only scanned photos towards the end) and then deliver it to a neighbor. Mom reading the paper, was upsetting to him. He would sit and stare at her until she finished and once she finished, he would huff at her, grab the paper and run it to the neighbor’s house.

Once when the water line broke while mom was visiting, Michael got so upset he blamed her. She called the plumber and had him come out. When the plumber arrived, Michael got in his truck and took off….long enough for it to be repaired and mom pay for it. Allowing mom to pay for anything like this was so out of character for him.

Changes in Speech and Handwriting

Found 2 birthday cards Michael sent mom one month before his death. One was signed "Have a Nice Day" and the other signed "Merry Birthday". Now I know, both were real clues as to what was going on with him.

He was saying very little at this time and mostly would repeat "Have a Nice Day".

Then for him to say Merry Birthday instead of Happy Birthday.....was out of context for him.

His handwriting was changing as well. Patsy's handwriting changed drastically as well. I noticed her handwriting changed about 7 years before her death. Michael's didn't change until about a year before his death.

Short List Clues to Identifying FTD or Pick’s Disease

If you wonder things like “Did they have a stroke?” “Are they depressed?” “Are they having problems due to alcohol consumption?” “Why are they acting so strange?” “Are they Schizophrenic?” “Have they lost their mind?” “They would never act like this in their right mind”

If we had seen a published list of behavior changes related to Pick’s or FTD on Good Morning America or Oprah, we might have realized sooner what was going on with them. When I look at the list, I say to myself, why didn‘t I see it, why didn‘t I recognize it sooner? It is like those mind bender puzzles, once you hear the answer, you go OH of course that is the answer.

Here is my list, but my brother and sister were poster children for FTD, so you will see these behaviors on many lists:

Early Stage

More flirtatious with opposite sex
Depressed; felt the world was crashing in on occasion
Compulsive behaviors; my brother used a women’s bathroom in a fine dining restaurant (he would never do that normally). Behaviors out of the norm for them
Would drink alcohol in group situations, makes them feel more confident
Mood changes are slighter in this stage; can get angry, but you generally can reason with them
Start drawing or showing artistic (could be music) abilities

Middle Stage

More reclusive, paranoid behaviors
Talk less
Smiled less
More conscious about spending money
Read less and watch more TV
Stop favorite activities; golf, because not able to make a put anymore
Speech is harder to understand; suspect they may have had a minor stroke
More aggressive behaviors; loose temper easily and can be physically violent
Problems keeping a job
You notice fewer friends around
Inappropriate behaviors; walk in on you in the bathroom/bedroom, change the TV station while you are watching it, pass gas in a restaurant, eat with mouth open, laugh at sad things, just RUDE
Rigid in behaviors. Taking a vacation, you get to airport and they say they have to go home to do their nails.

Later Stage

Repeat familiar phrases; i.e. Have a Nice Day, It’s a Great Day, eventually mute
Flip words around; Merry Birthday
Rarely smile
Crave sweets
Stop cooking, become afraid of using appliances or electronics
Paranoid behavior; shutting the blinds, locking the doors
Inability to function or interact in social or personal situations
Problems with personal hygiene
Repetitive behavior; go to the same store, buy the same candy bar
Rapid mood change, violent, angry
Failure to show concern, empathy, sympathy, compassion
Gain weight, physical changes, they walk differently or slump shoulders
Stop bathing, cleaning house, or doing laundry
Reckless driving
Less writing and signature may change drastically
Urinary incontinence

Great website UCSF

I think University of California San Francisco does an excellent job of describing FTD. Twice we sent of Patsy's blood work for confirmation of one of the strains of PICKS. She tested negative. It is the only place in the US that tests for this.

Disease Progression
FTD usually first appears when someone is in their mid-40s to early-60s and causes a steady, gradual decline in the ability to complete the daily activities of life. The disease can last anywhere from three to 17 years from the first symptom until death, with an average duration of eight years after diagnosis.

Behavioral variant FTD

Mild bvFTD
In the first several years, a person with bvFTD (often called Pick's disease or just FTD) tends to exhibit marked behavioral changes such as disinhibition, apathy, loss of sympathy or empathy for others, or overeating. Problems with planning organization and sometimes memory are evident, but the individual is still capable of managing household tasks and self-care with minimal help. However, impairment in judgment can lead to financial indiscretions with potentially catastrophic consequences. Social withdrawal, apathy and less interest in family, friends and hobbies may be evident. At times, they may behave inappropriately with strangers, lose their social manners, act impulsively and even break laws. But at this stage, the behaviors can often be managed with lifestyle and environmental changes (read our practical tips for ideas). A MRI image at this point will show mild atrophy in particular areas of the frontal lobes. [Michael got his 1 ticket for speeding and my sister had an accident; both had previously been very careful drivers. Both slowly withdrew from social situations, friends and family. Both gave up hobbies, sports, and cooking...gradual at first.}

Moderate bvFTD
Over the course of a few years, the symptoms seen in the mild stage will become more pronounced and disabling. You might also notice compulsive behaviors like repetitive urination, hoarding or collecting objects, compulsive cleaning or silly repetitive movements (like stomping on ants). Binge eating may create weight problems and other health issues. The cognitive problems associated with dementia become more pronounced, with mental rigidity, forgetfulness and severe deficits in planning and attention. The MRI image at this point will show that the shrinking of the brain tissue has expanded to larger areas of the frontal lobes, as well as the tips of the temporal lobes and basal ganglia, deeper brain structures involved in motor coordination, cognition, emotions and learning. [My sister would go to the bathroom every 5 minutes (generally not doing anything, just going through the motions), Michael would suck on his teeth, both would repeat short phrases ie "Have a nice day" "Life is good", both craved sweets and would eat as much as you would put in front of them - neither had a weight problem before the disease, but gained weight during this stage. There was no reasoning with them if they wanted to stay or go, would be very rigid about certain things...this varied. Didn't seem to care if they saw their children or grandchildren, didn't want to hold the babies. Patsy would collect straws, sugar packets, plastic cups and hide them in her closet.]

Severe bvFTD
By this point the patient is experiencing profound behavioral symptoms (apathy, loss of empathy, disinhibition) in association with language difficulty and memory loss. They may have trouble coordinating their muscles at this point and may require a wheelchair. Usually 24-hour care is required, whether at home or in an institution. The physical decline and changes that occur throughout the disease course become more and more obvious at this stage. Eventually, the person with FTD may have great difficulty swallowing and moving and they may have urine and/or bowel incontinence. Death from bvFTD is usually caused by the consequences of these physical changes, most commonly infections in the lungs, skin or urinary tract. Although it can vary widely, the time from the first symptom to the end is typically about eight years, whereas the time from diagnosis is, on average, about five years. [Michael died as he was approaching this stage. Patsy progress just as outlined here. The last few months before she passed away, her muscles seemed to not respond at all. She couldn't use her hands and they were swollen.]