Really? You Have Got To Be Kidding Me!

Lark

Really? You Have Got To Be Kidding Me!

Lark
Today I looked through some of the paperwork from my husband's visit to the heart doctor last week. We were there by referral. My husband's primary care doctor did several EKG's in office and found them to be abnormal. My husband's pulse rate was also very low (except for the pulse of ultra-athletes). His doctor used the word "communicating" in his description of what he thought may be the reason for the abnormal EKG. Some part of the process was not communicating properly with the other part of the process. My husband has Frontal Temporal Degeneration. There are several ways this diagnosis can manifest itself and often there will be more than one of these ways going on in the same person.

Now that I have a modicum of education about FTD I believe my husband was symptomatic long before more obvious changes began to appear. For the sake of brevity, my husband's legs began to weaken and his lower back began to have pain. Over a period of time this led to periods of time that my husband could not support himself on his legs. He had extreme gait instability. As time passed we learned that his brain would send the signal to walk but that signal would not reach his legs with that same information. There was a "communication" problem. This is why, at least four or five years later, when his doctor used the term "communication" related to the EKG abnormality, a red flag went up in my mind. I expressed this to the primary care doctor and he said it was possible that the changes were related to FTD. He also said that he wanted us to go to a heart doctor in the event that this was a true physical problem not related to FTD.

The visit with the heart doctor went well. He did an in office EKG noting the same abnormalities. He changed one the dosage on one of my husband's medications and put a heart monitor on him to wear for two weeks. I asked him if he knew anything about FTD. He shrugged and said he knew it was something to do with behavioral changes. He was correct in part and I said as much and I told him there were a number of ways FTD impacted people. He seemed more resigned to that comment than curious and we left without further reference to FTD.

My plan has been to get FTD information to provide to this heart doctor and give it to him at the follow-up visit. Then I began reading through the notes from the office visit. List of medications, any allergies, known conditions, etc. There was no mention of frontal temporal lobe degeneration. The one condition my husband has that could be causing abnormalities of any of his physical functions is not listed. Not given a brief mention in the medical notes.

Needless to say, I will be ensuring that the information is added to his medical records and am going to find out if FTD is listed as a primary condition at any of his health providers.

This is one of the reasons it is imperative that accurate information gets to health care providers about our loved ones and that we monitor our health records on a regular basis. I learned that the FTD support groups and the caregivers who talk about FTD are not exaggerating about the need for the education of our communities about Frontal Temporal Degeneration. I imagine that is true for many other conditions as well.

So, I am preparing to inform and ensure and respectfully demand that Robert's medical records reflect his diagnosis of FTD and that this diagnosis be considered in conjunction with other possible causes of medical challenges to come in the future.

 

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Lark

Isn't it pure joy that we have each other to support one another along our way? I smile when you use \"properly cared for\" because, as much as I respect the medical profession, I wonder at the sheer enormity of things they cannot know or understand. I appreciate your kind words. My poor husband may well feel himself a prisoner to an loving but harsh keeper of the key!

Helen

Deborah has said it well. Your husband has a wonderful advocate in you and is so lucky to have your care. I say Amen! to all your comments_mysql, especially about the need for education of the doctors. My husband also has FTD. When I think back, leg pain has been plaguing him for a long time. You're a great writer. If a doctor will listen to anyone, he/she will learn a great deal from you.