Sunday, July 31, 2011

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
 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 
& 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

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