Sunday, 19 July 2015

ALS and FTD - A Potent Combination

This post is from Darlene Long and was first published in the public Facebook Group, "ALS We are in it together." I am posting it here in its entirety, and without edit. I have both ALS and FTD.

When they're not them ...
It has long been thought that ALS steals bodies, but not minds. Recent research is now showing that maybe, for some, pieces of their minds are stolen too.
This is an awareness post update.
Frontal Temporal Dementia with ALS can strike some patients, sprinkling bits of this disease subtlety that will show up in different ways and with little fanfare. Everyone doesn't necessarily have the same troubles, though, and lack of mobility with ALS may mask what is happening. Caregivers need to be alert to personality and behavior changes.
Struggles with words, decision making, depression, anger and frustration can easily be attributed to having ALS itself. If a person loses their speech or ability to write, any loss of words can't be detected. And who wouldn't face depression upon learning they have a terminal illness that will leave them completely helpless. But those symptoms can also be signs of FTD.
Just when you think nothing worse could happen, FTD rears it's horrendous head, and its tentacles wrap themselves around their minds, causing more heartache.
One woman wrote that her husband spent hours every day communicating on an alphabet card to tell her how terrible she was at caring for him. Their time together was a nightmare. Indifference can come with FTD too. She would cry and tel him she was doing the best she could, that she was exhausted, and so worried because they had no money to get help. Her husband would look at her, expressionless, and then ask her to wipe his eyes. This woman loved her husband, and said he had always been the kindest, most considerate man she had ever known. She didn't recognize this stranger, but took his words to heart and felt he must be right. FTD doesn't allow rom for empathy or even for its victims to realize what they are doing to their caregivers. They are no longer 'them'.
Another man wrote to his children and friends that his wife was giving him too much medicine and trying to kill him. (She wasn't, and fortunately, kept a daily log of treatments and meds given that could be checked.). Paranoia is common with FTD according to the many posts of caregivers seeking advice on help sites. These patients misinterpret what is going on around them, and cannot see the truth and reality. The FTD clouds their reasoning and thought processes. The wife was heartsick as she and her husband had had such a loving relationship and she couldn't imagine this ever happening or him thinking such thoughts. Her husband was no longer 'him'.
Still another man dealt with his wife becoming obsessive compulsive, and was so worn out by her demands. She would get an idea in her head and couldn't let it go. Excessive buying of objects they didn't need, demanding he change her position and then continual repositioning for hours, and making changes around the house and in the yard took its toll until he felt he couldn't care for her at home anymore. His wife had never been like that. He said she had always been the sweetest woman who never asked for anything. She was no longer 'her'.
Caregivers of patients with ALS with FTD are prone to deeper depression and face a much larger burden of care for their loved ones. They often don't share what is happening either, because they feel both guilty that maybe they are not up to the job and/or they don't want others to judge their spouses/children for this new behavior.
ALS steals so much. We need to continually consider this thief, and keep what we can from its stealthy fingers. We all can recognize that these new behaviors 'are not who they are'. We need to see them for who they always were. We need to talk with their doctors and nurses to get them help with the new behavior and emotional changes if possible. We need to help them understand, as best as we can, what is happening, and reassure them of our love and support.
Okay, big disclaimer ... Everyone will NOT deal with FTD. Some may have only occasional symptoms. But it is important for all caregivers to be aware that changes may come and if they do, get help as soon as possible.
As many are gearing up for the next round of the IceBucketChallenge in August (and every August until there is a cure), please consider giving a gift of Hope, (every penny counts). Let's put this thief in lock up forever and release all these innocent victims from their life sentence of ALS.

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