Tuesday, February 7, 2012

FTD - Pills and Memory Loss


In my previous blog there were some inaccuracies in the piece I wrote about my Chiropractor. I apologize for the errors and it's been rewritten.

One of my doctors and friends, Laurie Mullen, a chiropractor, has worked on me with Sacro Occipital Technique (SOT). Laurie uses her hands to evaluate, release and balance muscle and skeletal restrictions which affect the sacral-cranial system. She gently feels various locations of the body to find restrictions of motion or misalignment. Laurie then uses gentle chiropractic adjusting, stretching, and pressure to release restrictions in any joints, tissues or cranial bones influencing the sacral-cranial system.

This balances the structures surrounding the brain and boosts the body's ability to self correct. I think this is an invaluable tool for those with neurological impairments.

This alternative medicine works. Laurie has been working on me weekly since I've been diagnosed with FTD and there is no question that I leave her office feeling clearer with the ability to think better. There is no question that Laurie's work and friendship have been a clear contributor to me functioning so well with FTD. This is the only physical treatment that has helped me with FTD that I know consistently works .


Thank you all for your well wishes. I've recovered and I'm back to living life. Of course there are some hiccups.

Yesterday, I was on the way to Steve's for a Superbowl party my cell phone went off reminding me to take my Namenda. Instantaneous panic ensued, followed by relief knowing that I keep extra pills in my backpack which I always have with me. I quickly took a pill before I forgot. I was at the bus stop filmng at the time and I hope the camera caught my immediate panic of the cell phone alarm going off and my first thought I had to rush home and then relief to realize my backup plan was working and I had extra pills with me in my backpack. Late last night when I got home and turned on my computer, my computer started flashing "Namenda"  when it when on. I smiled. My other back up was in place. Luckily, I remembered taking the Namenda at the bus stop. 

Other times, I can't remember if I indeed took it or didn't. Even though I remember remembering I forgot, I'm still not sure if I remembered to take the pill, when I remembered I forgot to take it.

Anyone with real memory loss knows the hurt and frustration over hearing from family and friends, "Oh yeah, I forget things to". It's a little different when you need to set up multiple alarms, notes, etc. to remember to take pills and even with all the backups you set up, you still forget without distraction in that brief moment after it goes off. The worry and fear about cooking and forgetting something's on the stovetop gets very real when you set up multiple timers and all of a sudden the smoke alarms is going off because you forget when the timers go off to go to the stove. 

I used to be pissed off that I have Dementia and it's against NYC law to buy "hot" food with Food Stamps, but now since they lowered my food stamp allowance to $.63 cents a day I don't have to worry about it anymore. 

The fear of having these memory issues and being institutionalized because you are a danger to yourself or others is very real. I write this blog at my own peril of Social Services knocking at my door because the messages I need to get across are very real to those suffering from FTD/memory loss and the public needs to be educated.

Those with FTD usually have memory issues that get worse as time goes on. I've had a combination of long term and short term memory problems. I never take them seriously, I try not to drive myself crazy. That is, till now.

After my heart surgery, the surgeon spoke to me of the importance of not forgetting Plavix and Aspirin each day or I could have a blood clot. That could have fatal consequences. Dr. Weiss was very concerned that I'd forget. He read my blog and knows I struggle with memory issues. I assured him I have protective measures set up so I don't forget. I have pill boxes with days of the week listed, 2 alarms that go off on my cell phone and computer that I stated earlier. 

In a perfect world that be sufficient, but not FTD world. Not only is it a real concern forgetting to take my pills, there is another situation of me forgetting to renew my prescriptions. 

I have 3 sets of meds to take and need to refill all three at different times every 30 days. Plus I need to make sure the refills are up to date or else they need to contact the doctors office and that could mean another couple of days. Of course this would only happen around a holiday which means not only would I be F'd, I would be in the ER begging for Plavix or worse. One of the reasons I've survived on my own with FTD is I'm always thinking three steps ahead. I decided to go to my community Pharmacy where they know me and my challenges.

This happened the day I left the hospital last week. I was on edge because a day earlier I had learned on the operating table I was having 3 stents placed and had a heart attack. As I said earlier, the surgeon, Dr. Weiss was very clear on the repercussions for forgetting this new med and aspirin.

I've been going to my local pharmacy for years and all the employees know me there. I'm always the same pain in the the ass. Like everywhere else they have a love me, hate me relationship. In all fairness I do joke around a lot, so sometimes people don't know whether I'm serious or kidding around. Two pharmacists were there and I explained I literally just came from the hospital and now had an additional 4 prescriptions for my heart. One of the pharmacists knows I have FTD,  has been to my blog and realizes that I have short term memory issues. The other knew I had something, but sees me a spirited young 50's guys. I explained about the surgery and my concern about running out of Plavix at an inopportune moment and if they could work with me on this one prescription by making sure it was getting renewed timely. I was just asking for a phone call or some way to keep track so I wouldn't run out, not a daily reminder. 

One of the pharmacists started started joking that I had no memory issues and a simple pill box would do. I tried to explain I had one and that's not the issue, but she kept jabbing away with jokes. I lost it telling her I'm barely keeping myself together and just asking for a little help and that this is a a serious situation and I guess I would have to find a different pharmacy. Of course, vulgarity was permissible at the time and I used a variety of choice expletives. 

The other pharmacist who I know very well quickly came down from her perch and took charge of the situation. We got it resolved over the next day or so with the pharmacy going to help me build up a reserve of a few extra pills in case everything that can go wrong, does go wrong.

I don't have that luxury of having a service contact me or help me because my long term disability company, Unum has decided to screw me and not give me my disability for FTD which was covered under my plan while I was working. I'm doing the best I can, but if something does happen to me I hope someone goes after this disgraceful greedy company because they are keeping me from resources that are clearly helping keep me alive.

This morning I noticed that the pills from Sunday were still in the pill box. Obviously I screwed up. I also noticed there was one baby aspirin in two empty slots. Don't know what happened and I'm not going to worry about it. 

This is just a moment in the life of an FTD'er who has a revolving door of serious issues every day that needs to be addressed. As each challenge happens, I'll address it to the best of my ability. Just can't help feeling that I'm starting to live on borrowed time. 

It's a lovely day in NYC, I'm at Starbucks and life goes on.



  1. Its sad to read this, but I guess we are all in the same boat, and by writing it down in a blog, helps us in some ways.
    We all make mistakes in our blogs at times, but I think people understand the illness and make allowances for our mistakes, and when they don't they really don't understand what we are up against.

    Good luck

    1. Hi Ken,

      Thank you and your right. People are forgiving.


  2. "It is what it is" You are an encouragement and an example to everyone living with this disease. Both the caregiver and suffer. Thank you for sharing the obstacles so we may all learn, to walk in your shoes.

  3. Hi Lorrie,

    Thank you for your unending support. Thanks for the latest comment in my blog. It means a lot to me. I have a tremendous amount of respect for you trying to deal with and tackle FTD with you HB through minimal medication and lifestyle change. I work on the same premise.

    With all my love and respect.


  4. Great article memory loss is one of the big problem disease. Thanks for sharing all information related to this topic.

    Memory Disorder Clinic


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