Wednesday, August 24, 2011


New shoes with built in GPS for wandering.

   It's a bit after 6am and I am at my office in Starbuck 181, Northern Manhattan.  As usual it has been a unique week.

A few days ago I went to the local supermarket and picked up grapes for dinner. It was busy with a long line at the cashier. When it came to my turn I swiped my EBT card and the cashier after a few moments announced out loud, "is that Debit or Food Stamps"? I said, "Food Stamps" and she said, thats $5.95. I quickly retorted that I was happy that I only received a $1.45 a day in food stamps. At that daily allowance, I know I would be at least spared four days worth of public humiliation.

This story of unintentional humiliation I have repeated to numerous people over the last week. Most people's reaction was pretty much the same, until I told it to my caseworker from Jewish Home Life care.  Julia's reaction was, " Howard, all you had for dinner was grapes? Have you been missing meals? Do you have food in the fridge? Have you been eating? My answer was sort of a stutter Umm, Umm, Umm I guess not. I had started wandering again and did not realize it.

Julia (not her real name. I don't want to be sued for part of my $1.45 a day food stamp allowance) nailed me and knew exactly what was going on. I started wandering again. What is wandering? First of all everybody wanders once in a while just like everybody forgets things once in a while. For someone with dementia, wandering takes on a whole new dimension. I started pacing and wandering a while back. Usually I leave my apartment with a purpose or a plan and it just gets out of control. Last week, I was in transition to a new home health aide and did not have food in refrigerator. I would leave the apartment and go from supermarket to supermarket wandering up and down the aisles and buying nothing. I get confused and disorientated and sometimes don't even know where I am. Then I walk around to the local neighborhood restaurants and look at the menus. Sometimes I actually go in to a restaurant and sit down but leave before it's time to order. I can literally do this for hours and go home empty handed.

I used to go downtown and start with a single purpose in mind like buy pasta sauce from Trader Joe's. I would usually make it to Trader Joe's but frequently not buy anything and start wandering. This can become dangerous in summer because of not properly hydrating myself. It also can become extremely dangerous because when I get tired, confused and disoriented I have a tendency to walk out in the middle of the street without realizing it. Of course living in NYC, taxi cab drivers take aim for you when you do this. I can literally wander for hours or until I'm on the verge of collapse.  The subways can be a safe haven for me. If I get disorientated in the subways, I can just sit in the train for as long as it takes till I feel regenerated. I have wound up taking the A train all the out to Far Rockaway where the train is elevated. That a couple hour ride. Welcome to the world of wandering.
I like to consider myself being like the Starship Enterprise wandering the city of New York instead of the Universe.

I never panic because I know that no matter what, I will find my way home at the end of the day. 

I have set up parameters for myself now that I know how dangerous wandering can be. To minimize risk I now go downtown only early in the morning and make sure I get home no later than 1pm. Afternoons are always the worst for me and I need to be laying down or with someone. It is no longer safe for me to be by myself in that state.

People with Dementia wander and even though we quite frequently start out with a purpose or a goal in mind, it frequently becomes secondary. It is important for a person with dementia to know his or her limitations and to set up guidelines to keep themselves safe.  We have discussed in Rivestone Memory Club what to do in the event you get lost. People reacted with, find a policeman, a bus driver, call a friend or relative. For me, I wait and figure it out. My family used to talk about putting me in an institution or group home so I have a fear of anyone finding out when I am lost or disorientated. I always figure it out and find my way or help magically appears. I do have a medic alert bracelet from the safe return program of the Alzheimer's Association. Though I have never used it, I highly recommend it's use for anyone with any type of dementia. Better to be careful!

Julia who I mentioned earlier is my caseworker for Jewish Home Life care. She is a seasoned social worker who meets with me once a month to help me with issues. I'm going to cut and paste a letter I sent to her earlier this week.

"Just want to thank for all your help and offering to help me with letting me know my options for long term care. It's a difficult topic and being my own caregiver I need to do whatever arrangements I can, while I still can. Also thank you for reassuring my I'm not alone and there are people to look after me. Even though I  am lucky enough to have a vast network of caring loving people, the fact is I do spend most of my time by myself and most of my contact  is mostly by internet. 

I don't know if we want to take another shot at increasing my $1.45 a day in food stamps. They might lower it again. Thank you working with me on the appeal to try and reverse the denial of a rent freeze. I guess it was denied because they found my secret Swiss bank accounts as well as my Chalet in the Alps.

I have a new full time home health aide starting this week. Wish both of us luck :-) . I didn't even realize how I was starting to wander again until you brought up my food issues last week.

My Blog has now gone international with visitors now coming to visit  from 10 different countries. I am also researching getting my blog translated into Spanish, Chinese etc. There is no question I couldn't be accomplishing what I am doing without the help of Jewish Home giving me a few hours a day to function fully. I'm hoping to show my appreciation by helping others".

Thanks again for everything,

Friday, August 12, 2011

Depression and Dementia

Most people that have dementia have had a normal life with employment, family, joy, happiness, loss and sorrow. When your diagnosed with dementia, your health and life can only go in one direction. Your whole life is turned upside down. Change is difficult but possible. The fact is you need to take your life into your hands immediately and make decisions and choices to find a way to be happy. Everyone has a right to be happy.

Depression is the number one enemy for people with dementia.

Pretend you are reading this next line with a Bob Marley, Jamaican accent.......
"I don't doo dee depression 'ting mon"!

Having dementia is a great excuse for allowing yourself to be depressed. On the flip side, since I have dementia, I can accurately state that I forgot how to be depressed :).

No matter which way you look at it, depression is not allowed into my world! Sorry, but I don't have time or patience to be depressed and it is not an option.

As far as I'm concerned depression is not allowed into my life and I will institute immediate changes whenever I feel that pesky parasite disrupting my quest for a peaceful, happy existence. When I write that depression is a pesky parasite it's because depression constantly tries to suck the life out of existence and I believe that people can combat depression with a mindset instead of pharmaceutical cocktails. I believe this to be true for people with dementia and people without dementia. Unfortunately, many psychiatrists have become just dispensers for pharmaceutical companies and society has come to believe there is a magic pill for everything.

Dementia is extremely difficult to treat with drugs. Chemical and structural changes slowly destroy the brain. It is difficult to administer drugs to a constantly changing condition. It's the difference between shooting an arrow at a stationary target or trying to shoot an arrow at a rabbit that's constantly changing direction and speed. Pharmacutical options can often be somewhat effective but side effects can be equally disturbing. Drugs will pacify your mind into living an illusion that may or may not work for you. People with dementia experience a mindset that like that of a running rabbit, it's constantly changing direction and hard to pin down with a single drug. However, it's possible to incorporate subtle changes to routines and activities to keep depression at bay, much more effectively than with drugs.  In fact, life is a constant flow and if we stagnate we will start to deteriorate, but if we keep moving we allow fresh new things to constantly enter our lives. This applies whether you have dementia or not.  Change is inevitable with dementia. Every facet of our life will be turned upside down. Work, family, driving, friendships, hobbies will change.

If we stagnate then a pesky parasitic invasion will take place and be allowed to win.  It is imperative to constantly trying new things and activities. You will find a renewed life filled with purpose and happiness, but you will have to put in the effort to make it happen.

Let me tell you about the last 12 months. I might have a reason or two to be depressed. I will also explain  what changes I instituted in my life during the way not only to keep from being depressed, but to keep my sanity.

May 2010 - I am admitted into NY Cornell hospital. Doctors begin to titrate me off all the medications I am on for being bipolar. I have been on a combination of pharmaceutical cocktails for 6 years. The doctors realize there is another underlying problem and order a full battery of testing done. I go through severe withdrawal symptoms from Ativan etc. I spend the next 6 weeks in the hospital.
June 2010  -My partner, soulmate and love of my life split up after 6 1/2 years. This was coming for a long time not only because of my illness, but other factors as well. My heart was shattered.
One of my doctors, (Psychiatrist) tells me the PET scan of my brain revealed an abnormality. She refuses to tell me what it is and tells me I need to wait 2 weeks for all the neuropsychological testing to be completed.

So here I am in a hospital with no family, going through withdrawal symptoms from these horrible drugs, my stepfather of 37 years dies,  my soulmate splits up with me, I'm told I have brain damage and the doctor refuses not only to tell me what it is, but tells me I have to wait at least two weeks to find out. I did put in a complaint with her supervisor about her lack of people skills. I did have many friends visit me at the hospital and help me keep my sanity.

Two weeks later still in the hospital we have a meeting with psychiatrists, the neuropsychological team, social worker, and my friends. They tell me I have this rare form of dementia that is incurable. I ask if they are 100% sure. They tell me only an autopsy can give 100% conclusive evidence. I ask them if we can wait a while on the autopsy. I am also informed that upon leaving the hospital I would need immediate neurological care, can never work again, need to put my affairs in order (power of attorney, medical proxy, a will), driving would soon not be possible, need home health care and need to join a group and get psychological help to deal with my dementia.

Is this depressing? Nah, we haven't even got started yet. Okay, you ready for some really juicy depressing stories? Sorry, we are not going there. Just like misery likes company and violence permeates violence, continually ruminating and discussing depressing things just creates and spreads depression.

Support Groups
Anybody that knows me knows that I am a very private person and there is no way I am going to discuss my life and issues with a group of total strangers. I have been on my own since I was 15 years old and just like I have tackled many obstacles in my life alone this was not going to be any different. There was no way I would even consider joining  a support group.

With that precedent being established the single most important thing you can do is get into a support group. Dementia is a life altering disease and to survive you need to make life altering decisions. Just like you had no choice in getting dementia, you have no choice in joining a support group. If you cannot find a support group there are now on line support groups and forums. I have joined the Association for Frontotemporal Degeneration's online support group   Finding and getting into a support group is probably the single most important thing that a person diagnosed with dementia needs to do. There is no way you can go about it alone or with friends and family. The same thing holds true about making subtle changes in your life not only to survive, but be happy.

A typical support group is with people that have different types of dementia but similar issues. Groups meet during the day and vary on the amount of time they meet per week or per month. The support group I belong to is called, "Riverstone Memory Club" and is located in Riverstone senior citizen center. There is no question that Riverstone gave me the tools necessary to make the drastic changes to once again have a happy, purposeful and meaningful life.

Being financially decimated by 6 years of being misdiagnosed, I had no money to join the support group in my area. Luckily and thoughtfully, the Alzheimer's Association gave me a grant so I could join the group.

Riverstone's Memory club consists or 12 members and it meets twice a week at a senior citizen center. Most of the people are like me with early to middle stage dementia. All of us have various types of dementia but all of us have the same common bond of having to deal with a progressive disease that virtually nobody on the outside has can actually understand. The group meets from 10:00 -2:00pm. I normally leave about 11:30am because my condition exhausts me easily and I need to rest.
Each week we discuss things like depression, isolation, nutrition and medical care. Our fearless leader is Carmen, a dynamic intelligent loving program director. When Carmen is is the room the energy level is drastically increased. There is also at least 1-2 social workers/interns in our group. We also discuss current events, do brain power exercises, dancing and field trips. We also have the most capable caseworker/social worker I have ever met. Milagros has helped me get home health care and medicaid after I was rejected 6 times. She also works tirelessly helping us with financials, legal and medical related issues. I could go on and on about Milagros, but I won't out of fear someone will steal her away from Riverstone. Told you I was self centered and selfish.  Milagros is a true angel impersonating herself as a lowly human.
Each of us are trying to rebuild our lives. Each of us are having similar problems we discuss. The members of memory club are a tight group and we speak honestly with each other. One of the members left the country to live his life with family abroad. After a few months he unexpectedly moved back. We were the only ones that could understand what he was going through on a day to day basis. Even though his family was loving, the only people that really understand him are us. I personally am glad he returned. I missed him and am honored to have him as my friend.They are some of the nicest people I have met. I am the only one there with Frontotemporal dementia. I expend most of my energy quickly by passionately discussing whatever topic is at hand. I do curse and say inappropriate things, but they understand I can't help myself. My disease is a hodgepodge of everything. I am always in the discussions because FTD effects my memory, relationships, behavior and every facet of life. There has only been one issue which I don't really need to discuss. I don't have any close family so I don't need to deal with the caregiver/family issues.  I am my own caregiver, meaning all decisions at this point are made by me. I do have a lifelong friend as Power of Attorney and Medical Proxy to take over in the future when the situation warrants.

Right now I do not have any time to even think about being depressed. Since I started this blog I have been totally overwhelmed with the response of people and the impact they say that it's having on there lives. Besides the blog, I have been doing other work to also help others with dementia and have found that this is turn is having a domino effect on many different people. I started it to help people with dementia and try to find purpose in my life again. Now it has turned into a mission.

I have had been approached by The Association for Frontotemporal Degeneration and Joseph Becker of Thinkfilm Inc. about making a film about my life and accomplishments with FTD.    Thinkfilm Inc. has produced hundreds of movie, TV, and corporate projects. It is also respected for it's work on the Emmy Award-Winning series The West Wing and HBO's K-Street.

I was contacted yesterday and told they are moving forward. 

How Fun is That! Move over Martin Sheen.

My life is extremely difficult and complex, but right now I am the happiest I've been in years!

Sunday, August 7, 2011

Routines, Children and Day to Day Chaos

Routine is extremely important to someone with dementia. In the last month I've had a lifelong friend from Seattle visit as well as my son visit. Things that break the weekly routine create chaos. I am exhausted a good deal of the time and it is hard to break from my weekly routine. I started to resent any changes that would have me alter what is scheduled. 

Time for mindset to take over. In life, especially in NYC it is extremely difficult or virtually impossible to keep up with a routine. Now I could sit home like a vegetable all day and watch TV and have Bibi cook for me or eat pizza, but I choose not to. I have excepted the fact that I want to and need to be part of the world. For better or for worse I will be out there every day amongst the masses. I will not isolate myself at home because of some FTD or dementia related issues. That would be the easy way out, I have never been one to take the easy road. Of course I want an uncomplicated life, but I do live on planet earth and there is nothing uncomplicated about that. Every day my day starts the same. Get up about
 2:00 am, flutter around the internet, stretch, relax and think till about 5:30am. I arrive at my office between 6:00 - 6:15am 7 days a week. My office is in Starbucks on 181st and Fort Washington Avenue in Manhattan. 

I am usually  back at my apartment by 10:30 am. Many times I'm exhausted and cannot get up till they next day, sometimes by evening I'm okay.

Today my friends texted me that  about 6 of us would have brunch together. My friends are the best support that anyone could possibly have with endless patience with and for me. Many I have known for 40+ years since childhood. I cannot get away with anything from them. They will not treat me any different than they have all there lives and they do know what is best for me most of the time. Brunch would be at 11:30am. In light of my routine I couldn't of course I could not go. I spoke to my friend on the phone and explained that I had my routine and it probably be best not to deviate. My son just left yesterday I needed  to get my self stable. Of course he totally understood and said, " Great, see you at 11:30".

Life goes on. Routines need to be adapted and even if it isn't okay, it will be okay. We had a wonderful brunch at my friend Steve and Sheila's apartment. At about 1:00pm I was near collapse. As usual I got up and said something to the effect of see you later. Went to one of the downstairs bedrooms and rested and rejuvenated till 3:15pm. This is typical of the way I push myself. My friends know it's better for me to break the routine and be with them for my well being. They also know at any given moment I need to lay down in a quiet environment. They are the most loving and caring people in the world.

About 20+ of us, (adults & kids) are going away for 5 days for Labor day weekend. It was brought up today so everyone can start planning. Or course I'm not going to go to that either :) . By the way, I only work on the articles for the blog in the mornings at Starbucks. It's now 8:30pm and I have been typing away. As you see, part of the routine is being able to adapt to breaking the routine.

In my last article I stated with Dementia every day is a new adventure. With Frontotemporal Dementia, every moment is a new adventure. 

People talk to me during the day and guess what, I'm as normal if not more normal than anyone else. To talk to me you would never think there was anything wrong with me. It won't take long though till there will be an FTD moment. 

I know that my decision making process has been compromised and my judgement is usually flawed. Normal everyday common sense decisions that we take for granted are now a guessing game for me. I know the difference between right and wrong, I just never know whether I'm doing the right or wrong thing.

Put that together with a constantly changing memory loss issues and my days get riddled with confusion and disorientation. 

I wanted to take my son Myles to a baseball game last week. I found cheap tickets on Stubhub and just needed to decide which day to take him and whether it would be a day or night game. Since I usually recharge my batteries during the day with frequent rests and combined with the abominable heat of late, I decided to take Myles to an NY Mets evening game.

I decided to book tickets last Tuesday night. 
I crosschecked the evening games during the week against the 5 day forecast. I found Wednesday's forecast to be slight rain, possible thunderstorm and 78 degrees. Friday's forecast was clear and 83 degrees. 
Which game would you choose to get tickets to?
 I chose door number 1. Wednesday's nights game. I knew there was a forecast for for rain and a thunderstorm, but thought it would be cooler than Thursday night when it would be clear. When we got off the train it was raining and never stopped. 

Baseball game got rained out, but we had fun hanging out together. My son and I had a blast hanging out in someone else's dry seats just joking around for an hour and a half before they cancelled the game. There were maybe 100 people in the stadium. We were together and that's what counts. Myles who is 13 kept calling over the, "beer here" guy. I  made a bad decision  in getting tickets for last nights game. Big deal, I was with my son and though the game would have been fun, it was the company that counts. We laughed and screwed around, took some videos, pictures, and ate some expensive baseball junk food. It was a fun father and son time together. Anyone can go to a baseball game and say oh yeah it was a good game, we went to a rainout and made it a fun experience neither of us will soon forget (even with my memory loss, I think). 

Children, FTD and dementia. It's an issue I never even thought about until it was brought up to me this week by Sharon Denny, The program director of The Association of Frontotemporal Degeneration. I didn't even think about it the last last 8 years. 

One of the projects I'm involved in here is addressing the need for more resources for
kids like Myles who are confronting with trying to understand this.   We're
working on the concept for a website for kids/teens, but it's still on the
distant horizon. 

For a global perspective people are living longer and waiting till there older when they start bearing children. This is a recipe for a lot of children needing to deal with parents with all types of dementia. Children will need to be thrust into the role of caregiver and we need to start taking this situation seriously.

In 1776, the United States average life expectancy from birth was 47 years.
In 2011, the United States average life expectancy estimate from birth was 78 years.

In China, life expectancy since 1949 has more than doubled.
In 2011 China, life expectancy estimate from birth is 74 years.
* CIA World Fact book

"Alzheimer's disease and other dementias are the single most significant health and social crisis of the 21st century," said Daisy Acosta, Chair of the Executive Board of Alzheimer's Disease International.

We are facing a worldwide new dementia pandemic looming with Alzheimer's leading the way. Just like the world wide debt crisis, we are facing a global pandemic crisis that will bite us in the ass if we don't start to address it seriously now.

There are many families like mine whose children are not only thrust into the reality of dealing with a parent with FTD, but might have to sacrifice a good portion of there life having to be a caregiver. I have no statistics, but because of a 50% misdiagnosis rate FTD population is definitely higher than anyone realizes. 

I started exhibiting the symptoms of FTD in my mid forties. My children then were about 6 and 10 years old. 

I have had FTD for about 7 years and my children, Myles 13 and Chelsea 17 are used to my cursing and inappropriate behavior. Since I have been doing it for 7 years they probably don't understand it's from an illness and think it's just me.They don't know there father before he was sick. It is extremely important to focus on children since this disease attacks parents with young children.  A website is a wonderful idea. Since kids/teenagers rabidly text, maybe there can be some rapid response text hotline set up. This way at home or outside, they can get immediate aide or comfort for a situation with a parent. FTD incidents happen moment to moment. 

I can't express the pain and horror that young children go through. While I was misdiagnosed for years I would say and do things that made no sense and they would look at me like I was losing my mind, and in essence I was. Today I do things that make no sense and it is only truly understood by a select few in the medical community as well as a few good close friends.

My children have a watched a father who would wander in the rain for hours with them trailing as I tried to find a specific Chinese restaurant. For years they have suffered through seeing me say things indiscriminately to strangers and watched me doped up on bipolar medications that had me mumbling and drooling on myself.  Now they are shocked to see I am in control most of the time, my hair has grown back, I stopped binging on carbs and have lost 25 lbs through exercise and proper nutrition. Yes I constantly have FTD moments all the time, whereas I cannot stop them from happening,  I am able to deal with them as best as I can as they happen.

My children are also effected because I'm wiped out financially. The Illness took me from being very comfortable to bankruptcy. My daughter goes to college next year and I don't have a penny to help out. My son had his Bar Mitzvah during a Saturday service in Seattle in April. Myles is observant and studied very hard for his Bar Mitzvah. To Myles turning thirteen means starting to make the adjustments to becoming a man. My son has humbled me. My son is in the 98th percentile of math in the country. He is smart, funny, and has a heart of gold. There was no Bar Mitzvah party and I did not attend the service. No funds were available. Heartbreaking for me, for Myles he is moving on. 

Please feel free to share you experiences below (in the leave comment area) of children effected by having to grow up with a parent with FTD. Your experiences will help give information to AFTD as well as the Alzheimer's Association about the fast growing problem of children having to grow up dealing with a parent suffering from Dementia. This in turn can help in the development of programs geared at children.

It is imperative not only that we learn of ways to diagnose FTD quicker, but help people get back on their feet like me. This disease is incredibly painful for children and family members. My symptoms are as much under control as they can be at this point. A year ago I was drooling on myself. Now, even though there are many behavioral issues, my children look at me under a different light and I am able to be useful enough to manage this blog and try to help others. 

That is my life now. I absolutely refuse to be denied from being happy, enjoying life, and being productive. I am living life like a millionaire who just happens  to be on $1.45 a day in food stamps.

My son Myles flew back to Seattle yesterday morning. I am missing Myles quite a bit. I was able to take him to the gate since he is a minor. I waited on line with him and gave his ticket to the gate agent when it was his turn to get on the plane. I gave him a hug goodbye. He then kept putting his arm out so I kept giving him more hugs. There was a long line still behind Myles and finally the gate attendant told me he was holding out his arm for me to give him his carry on which I was wearing, Oops. We laughed, I gave him another hug, then his bag and he left. 

I miss my son and my daughter but at least when I am with them now or speak to them on the phone, it is quality time.