Sunday, January 31, 2016

Be Your Own Advocate

http://memory.ucsf.edu/ftd/overview/ftd/treatment/multiple/medications-avoid


I am leading off today with a website that lists drugs that are not good for those with FTD. Notice this statement in the lead-off paragraph:

"Cholinesterase inhibitors, such as donepezil (Aricept®), rivastigmine (Exelon®) and galantamine (Razadyne®), are prescribed for people with Alzheimer's disease. They seem to work by helping people to improve attention and working memory by increasing the amount of acetylcholine, a chemical in the brain. Unfortunately most people with frontotemporal dementia do not benefit from these medications and may even become more agitated when they are tried. Generally, cholinesterase inhibitors are not recommended for patients diagnosed with FTD."

I continue to be amazed and frustrated each time I learn that someone with FTD has been prescribed these drugs. I am pretty sure this issue relates to the problem that even physicians have no idea what FTD is! They hear "dementia" and automatically assume it is Alzheimer's or that it should be treated in the same way. It downright frightens me that there are so many with FTD who are being misdiagnosed or improperly treated.

I know I have written before about my own experience with these drugs. I was prescribed Aricept (later changed to Razadine due to horrible nightmares) and Namenda. The cost of the Namenda alone, would put me in the "donut hole" by the month of March, which meant I had to pay out of pocket for the remaining nine months. I was going broke by taking a drug that was doing no good. I weaned myself off both of the drugs and was amazed at how clearer my mind was. I describe it as "less fuzzy." I would never suggest that anyone removed themselves from the drugs on their own the way I did. It should always be discussed with a physician first to safely wean off any drug. I am very fortunate that I did not encounter a problem on my own, it was pretty darned stupid of me. I know better!

Right now, I am taking a prescription drug to, hopefully, allow me to pass a kidney stone. I am experiencing an absolutely horrible constant headache. Writing this blog entry is the first productive thing I have done in the five days I have been taking the drug. I immediately tried to find any research about the drug being harmful to those with FTD, but could not find anything. I did find that a severe headache is a fairly common side effect of the drug in general.

I would have quickly discontinued taking the drug, except that the other alternative was surgical removal under full anesthesia. While I have not found any research to confirm a link, I have read of specific instances where the person with FTD or the caregiver, observed a decline after being given anesthesia.

If this medication doesn't help me pass the stone on my own, I will insist on a sit-down conversation with the anesthesiologist prior to the day of surgery. I am thinking there should be alternative means of anesthesia available, such as a spinal block. I would, of course, not refuse anesthesia if faced with no alternative.

The first part of this entry was triggered by hearing, yesterday, of yet another person with a definitive diagnosis of FTD, not Alzheimer's, who was prescribed the drugs.  The second part, at least with my recent experience, reminded me of how, when you have a diagnosis of FTD, you must work closely with all your doctors, not just your neurologist.

In my opinion, we, who have a diagnosis of FTD, and/or our caregivers have to self-educate ourselves. This means, not only to educate yourself on FTD, but to keep up-to-date on new findings. We must be our own advocate and not be afraid to ask questions from all physicians you encounter. Insist on answers, not accept that since they are doctors, they know everything about FTD or that they know more than you do.

We learned this lesson about 8 years ago when I was diagnosed with Hodgkin's Lymphoma. My husband became my advocate. He started keeping a binder of all medical reports, lab reports, medications etc. We avoided duplicate testing by the different doctors involved with my healthcare. He actually caught a severe deficiency that needed immediate attention. Ask questions!



Tuesday, January 12, 2016

No Apologies Needed

It has reached the point that when I hear someone tell me "You look really great," I feel like I should apologize for it. The reason is simple. I have been told so many times that I look really good so I must not actually have dementia. I get the same thing when someone realizes that I can usually still carry on an at least a semi-intelligent conversation or that I can read and write (type, no one could read my  handwriting after about two words). So when someone says that I look really great, I actually hear that I really look good so I can't possibly have dementia.

My usual response is that yes, I am very fortunate and that I am thankful that I have FTD and not Alzheimer's. I no longer try to educate individuals about FTD unless they show a bit of interest in what it is and what I am dealing with. It is simply a waste of my time and energy. I wish I could say something like that I wish their ignorance of forms of dementia other than Alzheimer's would make it so. Neither FTD or Alzheimer's is better than the other. They are both terminal diseases that rob you of your abilities, both mental and physical, and memory. To simplify it, the biggest difference between any of the dementias is that the stages of loss come in different orders.

I find myself constantly apologizing for my dementia. I do this often when I am attempting to check out at a store or order food at a restaurant or when asking for instructions. I have to take things very slowly and one step at a time or I get very confused and agitated. When the person I am dealing with or those who are in line behind me start getting impatient, I immediately start apologizing. This happens often enough that it has become ingrained in me.

Maybe I should wear a shirt that says "I am not a liar, I really do have dementia."

What I should not have to explain or justify is that I probably do look pretty good. I have lost over 50 pounds in the last five years. I also had cataract surgery so I no longer must wear eyeglasses that were almost half an inch thick. I also take the time to apply a little makeup to make myself feel a little better about myself. I also often wear some colorful jewelry to brighten up my face. It brightens not only my face but also my spirits, just a bit, to know I look as good as possible.

I thank God every day that I can still read a book or write a blog. The doubters do not realize that I read books that I used to think were a waste of time, the light-hearted ones that you know how it's going to end after the first chapter. Well, at least I used to know. They don't know how many words I have to stop and look up because I forget what they mean. (Thankfully, my Nook allows me to click on the word and the definition comes up for me.) They have no clue as to how long it takes me to write a blog entry. They have no clue that my jacket is hanging open because I can no longer figure out how to use the zipper and refuse to ask someone to help me.

The doubters also don't stop and think that I speak a lot slower than I used to. I do this because the thoughts do not formulate as quickly as before. They don't realize that I have only stuttered or used incorrect words a few times during our conversation. That it is because I am having a few moments of clarity.

The one thing I absolutely refuse to apologize for is making my "friends" feel awkward to the point that they avoid me as much as possible, if not totally. Just about all of my "before FTD" friends are in this category.  My "after FTD" friends are the real deal. They accept me as I am and are not embarrassed to be seen in public with me. While these friends are smaller in number, they are much better people in my book. I haven't had to apologize to a single one of them.

Sunday, January 10, 2016

Speak Up for Yourself

There is something I need to talk about today and is geared to both those with FTD and those who are caring for someone who does. If my story begins to bore you, please at least read the final paragraph.

On Friday afternoon, I had the unfortunate experience of needing an immediate appointment with my doctor due to some pretty frightening symptoms. I am fortunate that my doctor knows me, knows my history and is one who truly cares about her patients. I know, this should be true of all doctors, but the reality of it is not.

It only took her a few minutes to suspect a kidney stone. I have no history of stones or kidney-related problems. She decided to immediately send me to the hospital's outpatient center for some blood work and a CT scan. She told me that on her order ahwwr, she had written that I should be held there until they called her with the results and she would speak with me then. Then she reminded me again because she knows of the problems I have with my FTD. I'll skip ahead and say that I did indeed have a kidney stone but it was not blocking anything, so I was sent home in the hope it would pass. Oh, and I am to call her Monday morning.

Backing up now. My husband had escorted me to the doctor, but we were expecting someone to deliver something to our home shortly after the appointment. I called my sister and she met us at the outpatient center (which is conveniently only a few blocks from her home) and was my patient escort and anxiety reducer for the next couple hours.

After being registered, I was almost immediately invited to the lab draw area. I insisted my sister accompany me and they allowed it even though there wasn't much room for her. I wasn't confused by the blood draw, but I also had a urine culture specimen to deliver to them because the courier had already left my doctor's office. I also had my purse, my coat and yet more paperwork. Having more than one thing to worry about confuses me and causes more anxiety, so I was really thankful to have her with me.

Next, we were off to radiology where we had to wait for our number to be called. When it was, all my patient information was verified again then we were taken to another waiting area. After a while, I was invited into another small office to review things. When my sister got up, we were told there wasn't enough room. I actually stood up for myself and am quite proud of myself!!! I told the clinician that I have FTD, a rarer form of dementia, get confused and must have her with me. Guess what? No problem. She had nowhere to sit, but she came along.

It turned out to be a very good thing. I was handed two bottles of that awful thick, horrid contrast crap to drink. I immediately got upset because I just cannot handle drinking that and usually throw it up as soon as I drink it. My sister calmed me down and explained that the doctor said I didn't need the contrast, that the stone would show up quite clearly on its own. When the staff person realized we were looking for a kidney stone, she finally informed me that I was allowed to refuse to drink it and that she would note that I had on my chart. With my anxiety level over this issue, I would have been a mess if my sister had not accompanied.

Next, you guessed it, off to another waiting area. This time, I knew she wouldn't be able to go into the CT area with me, but she took all my stuff so I had nothing to fuss over and made sure I thought I would be okay. It was fine. I have had many CT's, MRI's and PET scans in the past ten years, so I didn't freak out inside the machine .

I had told everyone I encountered, at least twice each, that I was not to be sent home. Between her order sheet and my constant haranguing, I was held in the waiting room again. I was warned that it would most likely be at least an hour before they would get back to me. Fifteen minutes later, I was called to a phone on the reception desk and my doctor was explaining everything to me. I was allowed to go home and am to call her on Monday morning and we will decide what direction to go if I didn't pass it over the weekend.

Bottom line on why I am sharing this probably very boring story:  Never be reluctant to speak up for yourself in any medical situation. They will not think any less of you if you let them know your situation. In fact, you will probably get better care. Secondly, try to have someone with you who knows you well, knows your medical history and is not reluctant to speak up and truly be your representative.

Sunday, January 3, 2016

I Can Still Be Me

I had such a wonderful time New Year's Eve. No, I wasn't exactly out partying until the wee hours of the morning. My husband and I did, however, meet for an early dinner with a couple whom we had not visited with in quite some time. It ended up being a late dinner too, we were there for over two hours, just chatting and getting caught up. They are both right around our daughter's age, so you might not pick this as a great friendship, but it is.

They have  helped us out a few times when we needed muscle and brawn and we have helped them out a few times when they didn't need muscle or brawn. Perhaps we settled into being friends with them so easily because they filled part of the void created when our daughter moved out of state.
It doesn't matter why, all that matters is that we are solid friends. We don't see them as often as we used to for two reasons, the first being that they moved about 45 min. away and the second is that I am reluctant to socialize.

This reluctance to socialize boils down to things I have vented about many times on this blog. Primarily, it is because so many people don't want to be bothered with me anymore. I don't know if it is their fear that I might embarrass them in public (easily remedied by visiting me at home) or that it is difficult to carry on a conversation with me because of my speech difficulties. I truly do not know whatever else it could be. So, I am avoided by people I considered close friends. Some that hurt the worst was friends from church, several who have been downright rude to me. Somehow, I think we all expect our Christian friends to be a little more charitable with their patience and understanding. But I have gone off on this subject enough times and don't need to dwell on it now.

The four of us talked non-stop the whole time. In fact, I talked so much I only ate a quarter of my meal. When I had speech problems, they patiently waited, knowing I would get it out sooner rather than later. Yes, we discussed my FTD, but we talked about so many different topics. They have a lot of interesting things going on in their lives right now as well. It was just an awesome feeling to be accepted!

Why am I going on about this one evening? Simply because I was so comfortable. The restaurant was crowded and noisy and it did not bother me at all. It did help some that we got seated in a booth in a back corner of the restaurant where it was a little less hectic and noisy. The one thing, though, that helped the most was that I felt accepted for who I am, not rejected because of what disease I have. I cannot possible express how wonderful I felt during and after our visit. I felt like I was "me" for a couple hours.

To top it all off, they posted on Facebook about what a wonderful time they had as well. I think it would amaze some people how normal I can be if they just overlook the disease. I am still in there if they only take the time to look past the disease!