Make a Difference

Since I have started the blog, I have had people reaching out to me and making me feel incredibly good telling me how I am inspiring them. I appreciate the kudos but need to nip something in the bud immediately. I do not consider myself in bad shape or in a horrible situation. I have had and do have a wonderful life. I am surrounded by some of the most caring, kindest, best people that humanity has to offer. Since I have been sick, there have been some incredible people that have come to my aide with selfless acts.  I will be mentioning these people in future articles.    

 I am not selfish enough to just sit back and enjoy what time I have left and watch the world around me. The only way I know to thank everyone for there support and help is to give back. That is why I created the blog and that is why I am doing things like in the story you are about to read.


  "I do feel a lot of empathy for your situation and wish so much that there was something someone can do to make it better or make it go away. However, despite all your hardships, you're such a dynamic person that you seem to try and make the best of a horrible situation."

This was written to me by a nurse who has taken care of me. I responded to her email and now it's turned into this whole article. I have changed her name.

 First of all, I do appreciate your honest feelings about my situation. I am a man in touch with my feelings and I have done my fair share of crying. I do not feel sorry for myself and my life though changed is wonderful. The only problem is my situation is misunderstood. Teresa, I choose to live life within the confines of my illness and flourish with it. I will not lie down waiting to  die or sit around or sit around feeling sorry for myself. Yes, I am fully disabled, but so what. I am going to get up everyday and make a difference. 

With Dementia every day is a new adventure. With Frontotemporal dementia, every moment is a new adventure. 

FTD is a behavioral type of dementia, not a memory loss dementia (not till the later stages). I get to act offbeat, strange, make socially and sexually inappropriate comments to strangers and loved ones, realize and remember it usually later at night and cry about my behavior by myself in bed.

I don't have family to drive crazy, only good friends.


The other victims of my FTDness are those that follow my blog and the general public. The following is a typical FTD situation that happens to me all the time. I never know what to expect from myself.

Yesterday, I was with my home health aide Bibi and my son on a crowded NYC Bus in Harlem. I had 5+  people involved in a conversation about Frederick Douglas because someone asked how far away the stop was to Frederick Douglas Blvd. I spoke about what a great spokesman and civil rights leader he was and how far ahead of his time he was for the civil rights era. A woman seated next to me was with her son who turned out to be in Frederick Douglas Jr HS. I prompted him to tell some of the other standing NYC bus crowd a bit about more about Frederick Douglas. After some gentle nudging,  he did start talking about how Frederick Douglas worked towards abolishing slavery which of course was the itsy, bitsy, little thing I left out. My home health aide Bibi from Guyana joined in and talked about how she believed Frederick Douglas was going to be on her exam for citizenship. My son from Issaquah, WA looked on with his normal, oh dad look. By the time this little episode was over there were close to 10 people involved. It was a fun, nice FTD moment. 


Okay, so FTD doesn't sound so bad right. Wrong! When you say to a young woman on the street, "what are smoking for? Why would you want to lose those beautiful breasts" (from cancer). Try a couple of those on for size. We having fun yet.


I'm 53 and single with FTD. Try dating with this disease. I sometimes make it to a second date, but never a third. I might as well go on a date with a vampire and bring garlic as a gift.  


Are all FTD moments like the aforementioned? No. As stated earlier, with FTD every moment can be a new adventure. Other articles I have posted have described in detail what socially inappropriate and sexually inappropriate comments are. So far I have never been cursed out or punched. I have been publicly reprimanded and  admonished. 

Remember, there is a lot more to FTD than just behavioral issue. You can go to the Association for Frontotemporal Dementia for a broader explanation.

The AFTD  link is    www.theaftd.org

 Maxine is someone I know from Starbucks who knows about my blog and my desire to help people with dementia/memory loss problems.  Maxine's daughter's tutor is Karen, a disabled opera singer  who lives in Washington Heights. Maxine told me how Karen is   disabled with memory loss and neurological problems. Karen lives alone, is in her 50's, soft spoken and a sweet wonderful person. She has been sick for years and needs help. I wasn't sure what I could do, but knew I could do something. I spoke with Karen over the phone a couple of times in the last two weeks. I received a call from Samantha (Maxine's daughter) who was at Karen's apt. a couple of days ago and I went over to see if I could help. Karen did not even have a working refrigerator in her apt., nor did she have a clock in her apartment and was talking about constantly being late.  Samantha was incredible during our meeting. Not only was she taking notes when either Karen or I were having trouble communicating, (the blind leading the blind) Samantha would keep us both focused. The first thing I did at the meeting was give them a brief history of my dementia and to let them know there might be unintentional cursing and inappropriate remarks, possibly sexual in nature. I gave them some samples so they would not be shocked. They understood this and we spoke for about an hour. 

From the beginning it was apparent how protective, caring and loving Sammantha was towards Karen. Samantha  is a young, licensed subway singing opera singer. Subway opera singer Samantha Margulies (google her, she is on You Tube http://www.youtube.com/watch?v=yagih8gXIxI 
& NY Magazine) is nothing short of a hero for enabling me to start to help Karen. Samantha is an incredible 20 year old treated and just like my daughter Chelsea 17 who has helped people in ways that are beyond words, Samantha gave me a royal butt kicking, (deservingly so) with her heart, mind, mouth, and intelligence for treating her like a kid when I first walked in the door. 

It was clear from our meeting that not only is Karen is suffering from memory loss, but has many dementia symptomatic problems such as wandering, disorientation, confusion etc. There is no question she needs immediate help.  I called the program director, Carmen Nunez of Riverstone's, (memory club) and made an appointment next Tuesday at 9:30am for Karen, myself, my home health aide Bibi and Samantha. I  spoke to Karen and we are leaving from 187th Ft Wash. bus stop (4 bus) at 9:00am to meet with Carmen Nunez. After the meeting Karen, myself, and Samantha will join "memory club" (the memory loss support group.) It runs from 10am - 2pm. 

Later that day I called and explained to Karen that we share a common bond in that we are both private people and don't really care for support group activities. In fact, one year ago if you would have asked me if I would share my heart and soul with a bunch of strangers I would have told you, you were crazy. I told Karen we are both sick and need help. Our lives have drastically changed because of illness and with that we need to make drastic changes in our lives to find peace and happiness. I told Karen that I can help her only if she wants to participate and help herself. This isn't charity or a free ride. She can have a better life with peace and happiness, but she has to commit to make changes and put in the effort. She committed to me to try "memory club" a few times. I started going there last October and it is now a crucial part of my life. 

We also talked in Karen's apartment about her medicare and the difficulties she is having not only with Mt Sinai Hospital which cut their program because of budget, but the logistical problem she has traveling there. Karen because of her vision and disability issues has trouble traveling and we discussed me checking into health care options to get her different insurance. I checked about changing her medicare to a plan to get her into the Neurology department at Columbia University Medical Center/ Columbia Presb. Hospital on 168th Ft Wash. Open enrollment starts Oct 15th thu Dec 31st. New plans can start January 1st. 

January 1st. Forget about it. I found a loophole if she wants to get her in immediately. I am not an insurance salesman or used car salesman, but what I don't know, I find out. Oxford Insurance can enroll to  Karen but needs to speak to her with some questions about her health.  Samantha will help Karen with that piece of the pie. Karen wants to change her insurance. The cost is $0.00 for a replacement medicare plan. I will help her get into the Neurology/brain imaging department at Columbia.  

As far as her not having a proper refrigerator in her apt., that's next on the list. Karen did tell me that the building did put in a used refrigerator with no light. 

I cannot do everything by myself. I told a friend of mine Ruthie last night the story and she will not only follow up on the refrigerator, but will get Karen a clock so she knows what time it is.

I will also be checking into the "access a ride" program for Karen.  

This story is not a story. It is reality!  

It is a shame Karen did not get help earlier, but it's better late than never.

* Permission was granted from Samantha and Bibi to use there names in this article. Karen's name is fictitious. 

I now have the ability to make the difference in peoples lives. I have had over 300+ visitors to this site and I haven't even started to get warmed up on marketing it yet. What this means is I have a forum not only to help those with different types of dementia help themselves, but to increase public awareness about dementia. I am highly motivated for the rest of the time I am capable not only to continue this blog, but to help those with dementia who are alone get help and get my readers to start with random acts of kindness to help those in need, like I have been helped. In other words, it's payback time. Talk is cheap, this is something I have done this week, that I feel good about.


*If anyone knows of an intern or how I can get an intern to help me out a few hours a week, I would be able to not only accomplish quite a bit more, but be able to teach someone easy ways on how to really make a significant impact on someone with Dementia's life and there caregiver if they are lucky  enough to have one. 

**Last of all some housekeeping. I know I am new to the world of blogging and so are many of the people visiting this blog. On the top of the blog on right hand side you will see a tab highlighted in blue that says, "Join This Site". If you click on it you can join confidentially or have your name and/or picture listed like some of the people that have already joined. By joining you will be sent an email when I write a new article and it is posted. I will be writing new articles weekly. I have also recently joined Facebook so you can join the blog through my Facebook page.

***There is a shortened version for smart phones and tablets. If you don't see, "Join This Site" scroll towards the bottom of the page and above my profile you will see a tab for "View Web Version". Click view web version and "Join This Site" will appear towards the top of the page.

Thank you,

Howard Glick

Family

I want to thank everyone for there support. In the first two weeks since this blog has been established, there have been 306 visitors to the site. The response has been nothing short of overwhelming. I am currently in the middle of new articles including, "Dementia and Depression". I only have a few hours of fully functioning time a day so I cannot post articles as frequently as I would like.

My 13 year old son Myles from Seattle just arrived this morning and is in for a 2-3 week visit. I will be spending all of my time with him. If I have a chance to finish articles while he is here I will post them, but most likely it will be a couple of weeks before my next posting. 

Sincerely,

Howard Glick

Food Stamps and the National Debt

Like everyone else in society, I need to blow off steam which I do through ironical emails to people. Some of these I have been told are funny and entertaining. I recently applied to get my food stamp allowance increased and as life would have it, is was decreased. 

"Thank you for explaining to me that everyone has been getting a reduction in their food stamp allowance due to the national debt crisis. My food stamp allowance was reduced from $2.03 a day to $1.45 a day. Even though I am totally disabled it does give me pleasure to know that I am personally able to sacrifice and contribute towards reducing the national debt. It's also a relief to know that because of my 58 cent a day contribution companies like Exxon and GE will not have to pay any taxes, as well as we will not have to burden the top 2% of wage earners of the United States with any additional taxes." 

I now am receiving full time emergency home health care through medicaid and Jewish Home Life Care. I am permanently disabled with frontotemporal degeneration and can no longer take care of myself. Home health care has given me the ability to have 3-4 hours of fully functioning hours a day, whereas I used to have none. I'm able to think clearly and write between 6:30am - 9:30am. I usually start slipping quickly after that with the disease getting the best of me. Most days I wind up in my room from about 12:30pm till the next morning. I have absolutely no complaints. I am so grateful just to have those hours in which I can once again have purpose and contribute to society. I'm not sure how long it will last, but I will savior and take advantage of each hour.

 *Eight years ago I used to fly to Thailand and have my suits and clothing tailored in Bangkok. Today, though I currently present myself well, I realistically can't afford clothing from the salvation army. Guess what? It's morning, I'm writing and doing great. My life has once again regained happiness and purpose.  Next week my son is coming in for a visit from Seattle. Life cannot be much better.

 Thanks again for taking the time and making the effort to learn about dementia and how people learn to cope with it. For my comrades in arms that have the disease, stand tall, be happy and continue to move forward with your lives. I started this blog about a week ago and have had over 200 people visit it.

Next article will be Dementia and Depression 

FTD - Social Inappropriateness

First some housekeeping. I know I am new to the world of blogging and so are many of the people visiting this blog. On the right hand side you will see a tab highlighted in blue that says, "Join This Site". If you click on it you can join confidentially or have your name and/or picture listed like some of the people that have already joined. By joining you will be sent an email when I write a new article and it is posted. I will be writing new articles weekly. I have also recently joined Facebook so you can get to the blog through my Facebook page.

Type in Howard Glick to Facebook search and you will see the same picture as in my Blog. Send a request to join my Facebook and you will have access to my blog and a bit of my life.

*There is a shortened version for smart phones and tablets. If you don't see, "Join This Site" scroll towards the bottom of the page and above my profile you will see a tab for "View Web Version". Click view web version and "Join This Site" will appear towards the top of the page.

Thank you,

Howard Glick

I have been diagnosed with frontotemporal dementia. Each case is different and to each individual there is a broad spectrum of symptoms and it's pretty much mix and match. I have never met another individual with FTD/Picks. All I know is what I have read and what I have experienced day to day.

Frontotemporal dementia is in a category of rare neurological disorders. The frontal and temporal lobes are usually generally associated with behavior, personality, and language.

This disease strikes individuals predominately 40-60 years old and is a drastic life changer. I was 45 years old when I was stricken. Memory can be affected, but that usually is in the later stages. In frontotemporal dementia, portions of those lobes slowly shrink. Signs and symptoms vary depending on the portion of the brain effected. FTD victims sometimes undergo drastic changes in their personality. They may become socially inappropriate, impulsive, sexually hyperactive and sexually socially inappropriate, or emotionally indifferent. Speech and the ability to communicate and understand language can also be compromised.

There is no cure for frontotemporal dementia. It is a progressive disease, but the symptoms can be treated.  We are now in the infancy of learning and gathering data about FTD. With the capabilities of modern communication and the internet we should hopefully begin to facilitate more accurate communication and information on the disease with greater speed to help all involved.

What exactly is social inappropriateness? Since it is to impolite for the medical community to describe or write about, I intend to do exactly that. The purpose of this blog is not to be crude, but to share the experience and pain that people with FTD, and other types of dementia's go through on a day to day basis. I am in a support group each week with remarkable people that have different types of dementia. Some of our experiences are the same and some are different. We all share the same feelings of being misunderstood, isolation, loneliness, and pain every day.

 Once again, the only way to accurately depict what socially inappropriate behavior is to give real examples. Any names of people I use are being used with their permission. These incidents I am sharing with you happen to be on the tamer side of the spectrum.

Last week I was with my friend Ruthie at Fort Tryon Park in NYC and we were sitting on a bench when a fellow walked by with a unique looking dog. Ruthie and I were engaged in conversation and I shifted gears and all of a sudden said,"That's the ugliest fu___g  dog I've ever seen in my life" without missing a beat.  I said this in a matter of fact way, without shifting my tone of voice or getting loud. Ruthie, knows I do this and can't help it immediately had an alarmed look on her face and said, "Howard". The man who was walking his dog immediately turned to me an said,"What did you say".  I told him I wasn't talking about his dog.

Did I realize after I said it that it was a horrible thing to say, yes. Did I care at the time, no. Do I care now, yes and no or maybe not really. Things I do during the day for some reason don't hit me till evening. That night I lay crying in bed thinking not only about that incident, but others similar to it that happen and I cannot control my actions. It is almost like a turrets syndrome reaction, with an arm involuntarily being raised.

A few weeks ago I was visiting my ex-partner of 6 1/2 years Tamara at her apartment. She had one of her closest friends, Pam visiting. I haven't seen Pam since we split up about a year ago. The three of us were engaged in a conversation about the island of Martinique which they were about to leave to for vacation. I just matter of factly said that Tamara had great tits and they should find a nude or topless beach to go to so she could show them off. Some people might make off color remarks like this, but I never do. Tamara is a professional who works in the medical industry and I was a professional in the technology industry before I was disabled. This is a remark that I would have never made 8 years ago when we met. The fact that Pam was there was extremely upsetting. I didn't even realize what I was saying. They both sort of looked at me with a surprised look and it hit me. I got extremely upset and left immediately. I didn't leave my apartment for three days after the incident. I spoke with Tamara and she told me that they were taken by surprise, but understood. This happens to me on a regular basis and can be devastating. I find it extremely difficult to be in public and fear things that I might say and as a result,  I isolate myself away from the public at home knowing isolation is the worst possible action.

Many of these incidents involve sexual connotations. I do not gawk at woman or almost never rude, but when I do make offbeat remarks, it certainly keeps my dating opportunities to a minimum. This disease can torture people as well. I am now 53 years old and suffer what the medical community calls, "sexual hyperactivity". This loving term has been given to people like me with frontotemporal dementia and other strange and elusive diseases.  At 53 years old I have the libido of a 16 year old.  Does this mean I act out and make inappropriate passes and act rude? Ordinarily not, anyone who know me knows I'm the consummate gentleman (most of the time).

These incidents happen and there is absolutely nothing I can do about it.  My current neurologist, Dr. Karen Bell tells me that I live in NYC and not to worry about the cursing. I do monitor my behavior as well as I can and it's exhausting.

Making the most of a dementia enhanced life - Howard Glick

Dementia - You got it. Now what?

Well it's been one year since I have been diagnosed with frontotemporal dementia and each day is truly a new and wonderful adventure.  I wake up each day and the first thing I think of is all the wonderful people that life has surrounded me with. My children in Seattle, my lifelong friends, the people in my support group for early stage dementia, my doctors, and the cast and crew I hang out with every morning at Starbucks.

In the last year I have truly seen the best and the worst that the human race  has to offer. Since I am determined to make this a constructive, informative, and positive blog I will focus mostly on the positive. On the other hand, it will be a reality based blog so we will have to submerge into some of the dark pits of life as to understand why I am so happy now. In the last 12 months life my life has gone from a living hell to once again a life filled with purpose and happiness. Life is truly the ultimate adventure.
Guess your starting to understand why my nickname is, "Waffles".

Is frontotemporal dementia best served with a little bit of ginger and a lot of wasabi? That was my initial comment to the staff of  NY Hospital Cornell Hospital after they told me my diagnosis. In a serious meeting with the neuropsychological team, psychiatrists, social workers, and my friend I was told my PET scan and neuropsych testing revealed frontotemporal lobe degeneration. This is 6 years after being misdiagnosed as being bipolar. I was in NY Cornell Hospital for 6 weeks where they titrated me off the approximate 20 pills a day I was taking daily that had kept me in a medically induced fog. What a relief, I wasn't bipolar and I was no longer stoned out of my mind. For the 1st time in 6 years I was off just about all drugs except the medical staff started me on a new drug called aricept. I was out of the fog and back with the exception of one little hiccup, frontotemporal dementia.

Of course I just lost the woman that I had experienced pure love with, my children were in Seattle, I was flat broke and could never work again, needed immediate neurological help, take care of my will and would need home health care in the near future. Why sweat the small stuff. At least I have my health. OOPS! Another dementia moment.

Under construction:
1. Routine, Routine, Routine: A day in the life with dementia.
1. Frontotemporal dementia: What is really known about it? Why so much misinformation?
 2. Friends and Angels: Lifesaving friends and caring, life changing doctors.

Explaining the Unexplainable

One of the most frustrating things for people with dementia is trying to explain what dementia is. The truth is you can't. People with dementia constantly hear things from people that know them like, "I forget things all the time ". "I get lost as well". These common responses are unintentionally hurtful and cause people with dementia to want to isolate themselves.

When you have dementia you have to accept the fact that you cannot explain the unexplainable.  You can only explain through example and even then must accept the fact that most people will not understand.

A couple of weeks ago I was in bed and wanted to change the channel of the TV.  The remote was next to me and I looked at it and sort of knew that it controlled the TV but was not sure how to use it. I picked it up and looked at the buttons but had no idea what to push or how to use it. I got up and manually shut off the TV. I did not get upset because I'm used to these quirky things happening. The next morning  I woke up, reached for the remote and turned on the TV without hesitation. Haven't had a problem with it since. A classic dementia moment.

Another example is my laptop. Not to long ago I wanted to go online but did not know which icon to push. I wasn't sure if the icon disappeared from my screen and called customer service. I explained my situation and they helped me find the icon which was right on the screen where it should be and never had moved. Another one time occurrence.

Approximately six months ago I was in front of my apartment building and got disoriented and did not know where I was. This happens and when it does I either sit down or just stand still till I realize where I am. This can last from minutes to hours. Fortunately the handyman from my building found me and took me home. The scariest thing was not even getting lost or disoriented. This happens and I'm used to it. My fear at the time was a family member who was starting to discuss putting me in a group home or institution. I had more anxiety over my family finding out about the incident than the actual incident. Many of us who suffer from dementia have similar legitimate fears therefore we start shying away from our loved ones and go into a self imposed isolation. I wear a medic alert bracelet from the Alzheimer's association but have always been to scared to use it. I still wear the bracelet but no longer even think about using it. I know that no matter what happens, sooner or later I will find my way home and I always do.

Welcome to the wonderful world of dementia..........

Howard Glick