FTD Support

Flu shot

The AFTD medical board was recently posed the question by the FTD Patient Support Group whether the flu shot was safe. The AFTD medical board is made up of the finest minds in FTD research and medical management. It's perfectly safe and recommended for those with FTD. I received my first flu inoculation ever last week. Still here. Remember when you get to heaven and God see's you've died from FTD, well you paid your dues and get an ocean view room. If the list says you died of stupidity not getting a flu shot, you get a basement room.

Advertising

Since reaching 100,000 visitors I've received more than 20 requests to advertise from people I know. The mission of this blog is to spread awareness of FTD. To share my experiences of living life with FTD and to disseminate accurate information. The purpose is for FTD'ers, caregivers, loved ones and the medical community to gain understanding and insight into FTD. Many who wish to advertise are friends and follow this site. I cannot in good faith stray from my mission of keeping this a site people trust. Therefore I will continue with my policy of no advertisements except for occasional AFTD sanctioned fundraisers like this current AFTD  Example: This is a great fundraiser from a loving family.

(Click) Hope runner

FTD can be an isolating lonely experience. First the diagnosis after months or usually years of misdiagnosis. Then shock, I have dementia and I'm going to die.You lose your career, your money, your family treats you like a child and most even have there ability to operate a vehicle, they're drivers license taken away at the beginning stages. The air stinks of fear everywhere you are or go.Your told to make your "end of life" plans and to get prepared for death. Your alone and no one gets it. So your stuck at home, lonely, just watching TV, not getting out of bed, getting aggressive and depressed knowing FTD is a one way street. Your life has now become getting shuttled back and forth to white sterile rooms with doctors who treat you like shit and just want to run more and more tests. Your life has become a living hell. Your alone and no one gets it. That's without FTD sucking the fucking life out of you. Making you unmotivated, stripping you desire to do anything. Your eating habits change. You crave carbs and sweets. You get obese.

Then comes the epiphany, why don't I go back to work. One day you proudly you state to family or friends I'm returning to work. Every one of us do it. You get the look. I'm sitting here right now feeling it. I said that to my girlfriend last year. Received a worried and concerned look. Are you out of your fucking mind. You stand silently realizing I feel perfectly fine, yet so fucked up. You can't even do the application. I can never work again. Yet I feel healthy. What happened? FTD. You continue to withdraw into your silent death space.Your family tries to help and show love, but your resentment for having your death space intruded upon makes you act out in unimaginable ways. You don't even recognize yourself and your actions. You withdraw silently. Your scared to communicate. Your in the car with loved ones and silent. Your a living ball of tension. One word said and you lash out. You know your thinking isn't straight. Sometimes you don't understand what's being said around you. Someone says, "your best friends daughters birthday party is cancelled because her boyfriends father died". Silently you sit not having a fucking clue of what was said. Silently you sit for fear of being found out. Silently you sit because you know your slowly losing your mind. Your alone and no one gets it. You go to a restaurant. You hear every conversation and noise around you at once. Your on edge and lash out at the first misstatement. Your friends or family take you out quickly. They understand, but stress and resentment grow. There life has also changed and is ruined. Medical bills come in. Time to sell the house and downgrade everyone's life. What happened, FTD. Headaches, tremors, speech impediments. Your alone and no one gets it. Words flow from your loved ones lips, daycare and assisted living. But I'm in my 40's or 50's. What's happening to me. Your alone and no one gets it. FTD is a one way trip. Unstoppable, untreatable and incurable. A one way trip with no return. Depressing isn't it.

Depression is the number #1 enemy for those with FTD/Dementia . Everyone is under constant attack from that pesky parasite. If you don't get out of bed or shut off the TV, that pesky parasite feasts on your heart and soul. 

Why the fuck am I happy every day. I choose to be. Happiness and a good life is a fight with all your heart and soul when you have FTD. I spent 6 years a drugged up mess while being misdiagnosed. Even after diagnosis I was given anti-depressants because those with dementia are depressed. I threw them in the trash.

I've a mind altering disease and you want to give me mind altering drugs. That makes a lot of sense. Fuck you and your chemical dependancy. I've stolen my life back. 

Yes, I'm angry. Why? The further I stray from the traditional pill dispensing genre of Western medicine the better I feel. I'm out here alone with a few buddies, but no friends or any one to lean on. Big deal. Yesterday I got lost and found myself on the campus of ASU. Don't care about getting lost anymore. I'm always okay and no matter what, know that I'll be sleeping in my bed at night. Unless I get lucky and wind up in someone else's bed. Was scared of getting a ticket at a meter, but was told that with my handicap plate I can park anywhere. Found a great barber while lost and FTD educated her. Then spent the better part of the day on campus around students educating them on FTD. One suggested I smoke pot. I laughed and told him I'm stoned being straight all day. Attitude with the innate desire to make the best of each day. Living with happiness and purpose keeps me going. 

*Of course many get helped by and need modern medicines. Just speaking from my experience of taking to many screwed up drugs that were suppose to help, instead had more harmful side effects.

Changing face of support.

What helps me along. People. People help people. FTD Support is one major reason for me living successfully with FTD. My health will get progressively worse. Nature of the disease. For now, I'm making the best of every day. Who are the best people to help people with FTD. Those that totally understand and "get" the disease are those with it. I stop in Starbucks or anywhere they have free internet and get involved a few times a day. We've 80 members in the group with most constantly floating in and out. Many are involved and many read the posts and once in a while post. There is no right or wrong in the group. There is a unique understanding that we're all 'comrades in arms' and fighting the same battles. We tackle all the issues and laugh at ourselves and the world around us. Some are alone, with families or are in assisted living. The group has been running for 2 years and we're like a family now. We hail from 10+ countries (lost track) and have that bond of FTD. The positive repercussions of the group are felt by our families and the outside world. We all learn about ourselves and share our experiences in relation to the medical community, social services, family etc. 24 hours a day it's running and there's always someone on. We discuss what drugs work and which don't. We keep up better than most docs. AFTD is there with there director, Sharon Denny who is our accomplice and fact checker. We laugh at ourselves and our FTD kinks as well as the world around us. Who else would understand a group where separate people can admit and laugh about putting books, dishes and underwear in the refrigerator. We might be a little FTD'ed, but we're not crazy. Can't remember a day when I haven't been on the sending or receiving side of texting, emailing, phoning other members. We're truly friends and the communications can just be to say hi or because someone is ready to fire or kill there doc. We openly visit each other in our areas and when we travel. People mail fun gifts to each other etc. 

The face of support and help in the world is changing. We've tried chat, phone in's, Skype and other technologies. Some work, some don't. It's an exciting new world and my job as leader of the band is to find the best communication techniques for me an my family. In a world where most public support group and resources are thrown at caregivers this is a refreshing, proven means of support. 

There are other groups on Facebook now that are generic in nature for FTD/dementia. I feel most need a base group like the FTD Patient Support Group and then bop around to others. No question, the most refreshing groups as well as those that have the best and most accurate information are now on Facebook. There are also groups which I recommend FTD'ers to avoid. Things change and are in constant flux. Just like good medical care, people need to know which sites really have good support. Same thing with docs and medical research centers. 

Caregivers do the same. No question the most active support groups and best resources are on Facebook now. I will be furnishing a new list of recommended support groups in the near future. AFTD has a phone support group set up for patients now.

Though I live a life with a diminishing mind. I will fear no evil and continue to do my best to keep up and evolve with technology and techniques to help give the best support possible. You fail a few times and then the light bulb is created by accident.

Please email your group, caregiver, patient or mixed to go on the list I'm putting together. FTD, Dementia's, Lewy, Alz and other related will go on the list. Please email me about a group you run or enjoy. howardglickftd@gmail.com

Howard

I live alone and where not destitute, I could use help. Am on Social Security Disability with no other help. I'd like to see my children more than once a year. Gift cards, Starbucks, Costco, Trader Joe's, Whole Foods, Outback, Red Lobster, cash etc. They are deeply appreciated. For those that want to help there is a yellow donation button on top of the page or my address below with gift cards, cash. Letters with FTD questions are fine:

Howard Glick

7791 East Osborn Rd. apt. 170E

Scottsdale, AZ 85251

Living med free in Arizona

* I run a private FTD Patient Support Group on Facebook. It is open to those with a firm FTD diagnosis. The support group is a place where those with FTD can gather in a positive environment and realize there not alone. It's also a source of accurate information which is rare in the quick changing world of FTD. The director of AFTD, Sharon Denny is a permanent guest member. AFTD has been kind enough to open up there medical board to answer member questions. Please email me at howardglickftd@gmail.com to join.

Howard