Oh, So Frustrating...

I do not think it is possible for anyone who does not have FTD to understand the frustrations we deal with. It all begins when you realize, or someone else tells you, of the symptoms you are having. Most of your friends and family will say, "Oh, come on, there is nothing wrong with you. I do that too!"  Then, when you finally make that doctor's appointment, the doctor often dismisses your complaints, orders an anti-depressant or refers you to a neurologist.

I cannot begin to tell you of how many people with FTD were put through batteries of testing by neurologists, only to say the same things or blame it on depression. If not depression and they understand dementia, most will diagnose Alzheimer's Disease. The first action most of them take, at this point, is to hand you a prescription designed to treat Alzheimer's. (Aricept, Namenda, Exelon, Galantamine) That would be great if these meds improved FTD, but they usually do not and, in fact, they often worsen FTD.

By the time many of us are diagnosed, we are much further along in the FTD progression and have dealt with a lot of stress in trying to locate a neurologist who actually does know FTD.

I know I have ranted about this subjects many times, but it struck me again this week. I have been having brutal headaches in the back of my head, nearly constant.  This headache is similar to an FTD headache in the fact that it is extremely painful and nothing relieves the pain. I knew the area was in the area of the occipital lobe and I knew I was scheduled to see my retina specialist soon, I waited. I told him about the pain and he asked me to show him where it was. He responded that I had shown him the area of the occipital lobe. Gee, why didn't I think of that! That was the end of the conversation. I was so frustrated because this man is a brilliant retina specialist and has been saving my vision for nearly 30 years. Because of our history, I do not hold this against him.

My next step was to break down and call my family doctor. She reacted immediately and ordered an MRI and carotid artery scans. When these provided no answer, she referred me to a neurologist. I really do not like neurologists after being misdiagnosed by three of them here in town. I did agree to see a fairly new one who is much younger, so I thought she should have learned about FTD in med school. I had to wait over three weeks for an appointment with her, even though I begged them, explaining how much pain I was in.

Finally, at the appointment, where I told her I had FTD, she immediately said "Are you on the dementia drugs?" No, I am not, they are contra-indicated for FTD. "So, you aren't taking them?" No, not only are they contra-indicated, they often worsen FTD. "Oh."  About five minutes later, "Would you consider taking the dementia drugs?" The frustration came out and I growled out "I refuse to take a medication that might worsen my dementia." Fortunately my sister was in the exam room with me. She took hold of my arm and whispered "It's okay." So I was able to proceed.

Then the doctor asked about my double vision since I had noted that as one of my symptoms. "Have you tried prisms?" What? (With her accent, I had difficulty understand the word.) "Sometimes at the eye doctor they will put prisms in your glasses and that fixes it." No, that would not work because the problem is in the brain. It is unable to bring together the images that each eye sees. "Will you try them?" Okay, I lost it again. I asked her, in a questioning, and probably sarcastic, tone of voice, "Do they make prisms for the brain? I didn't know that." Again, my sister had to calm me down before I was asked to leave.

She did give me a diagnosis of bilateral Occipital Neuralgia. That basically means pain in the head, which is a shade better than pain in the butt which we already know I am! She referred me to the only doctor in our area who gives the needed injections into the occipital nerves as a nerve block. It was either that or adding yet another medication that may or may not work and may or may not conflict with other meds I take. That had been her answer when I asked if the would. Even though I do not look forward to getting injections that close to the brain, I chose that option. She said she would send the referral and the pain management office would call me to make an appointment.

I did not hear for 2 1/2 days, so I called the pain management center. Yes, they had the referral. No, they could not give me an appointment until I filled out the packet of forms that they had mailed to me on that day and I sent them back. I have not received these as of yet which means until I get them filled out and delivered back to them it will be yet another week. I know how busy this doctor is because we had to wait weeks to get a spinal tap done on my husband a few years ago. I also know how good he is and I feel safe putting myself in his hands.

Bottom line, by time I get the nerve blocks, I will have suffered through this horrible pain for at least two months. No medication touches the pain and it is debilitating most of the time.  This is only one event in my nearly eight years since I first noticed symptoms of dementia. Experiences like this are fairly common for those of us with FTD and is just one in a long list of frustrating experiences I have had to deal with and I am not alone.

I won't go into detail about many other frustrations we must cope with: The inability to do things that we could do before FTD, things that we used to enjoy. The times when our body fails us and we fall or stumble into things. The times our loved one or caregiver criticizes us or refuses to believe that we truly cannot do something they are expecting us to do. The number of friends and/or family members who now ignore us. Obviously, this list is but a tiny few of the frustrations we deal with constantly and that worsen as our disease progresses.

Whatever you do, please, please, please do not tell us "Oh, you look fine" or "You are too young to have dementia."  I am at the point of frustration where I just might kick the next person who says it to me!