Anyone have experience with ALS and Frontal Temporal Dementia

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mammaberger

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Hi to all. I am in the process of being diagnosed with a possible motor neuron disease and my doctor from what I have been explaining to him thinks I have FTD. My question is does anyone have any experience wiht this and antidepressants. I would like to take something for my depression but I am just not sure if normal antidepressants would work considering the brain is being effected. Does anyone know if there are drugs to help with dementia. I notice I forget things and small tasks around the house are difficult. Things like unloading the dishwasher, it's not just automatic, I have to think okay where does this go, it's really frustrating. I have also noticed I don't want to leave the house anymore, this is wierd for me I never used to be in the house. I used to be a social butterfly, now social situations scare me. It's a hard feelig to describe this ftd but I'm just not aware of my surroundings like I used to be. I was always a neat freak, now my house beomes a disaster and I don't even notice it. I hate this more than anything that's happening to my body. Does anyone know does the ftd just keeep progressing with the mnd or can it stop at a certain point?
 

olly

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hi, ive had some memory problemsand i am bad with my concentration and sometimes have difficulty naming objects. mnd can effect frontal lobe of brain that effects these things., as there are mns there as well. i too used to be a clean freak but now havent got energy so blowit lol.
 

mammaberger

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I hear you with the no energy issue, but I feel this illness is seriously effecting my cognitive functioning and my personality. All I want in life is to be mom to my son and have my life back. It's like I'm being pulled into a world where I don't want to go. I hate it.
 

olly

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any disabling illness wears you out , emotionally and mentally. so much is going wrong inside your body and i know some meds to treat neuro symptoms can impaire cognitive function. i too used to be out all the time and now go out 2 or 3 times a week just to town or shop and i get very nervous being in a crowded place. people stare at me with my walker and it puts me off
 

mammaberger

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I'm not even taking any meds yet. I'm seriously considering smoking pot, I was watching this lady on you tube she smokes it she has been better since. I think she is living with als for 20 years. I tried in in high school hated it, but maybe now with a condition it may help me. Damn people for staring and making you feel uncomfortable. I said that to my husband as my illness progresses what will he do if people stare, knowing my husband he will have some coments from people who's eyes are bulging out. Olly how long since you've worked.
 

olly

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hi mammaberger. in answer to your last question, i was 32 when i got ill 8yrs ago. i was very ill first few yrs and then my condition stablized for 4yrs then started to deteriorate last 2yrs.im a single parent and used to work fulltime but had to giveup . my son will be 19 on saturday.speak to you again soon and take care
 

redneck charger

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Mom has suffered of some dementia.. forgetting things, forgetting some words.. But they tell me her dementia is caused by lack of Oxygen.. I can now tell when she doesn't use her bipap machine at night time..:?
 

joejoe75

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My mom has FTD

I am the daughter of an ALS patient , my mom and also she has ftd. Okay here's what I know and have seen: it's definatly behavioral not memory related but it will make it difficult for you to make decisions alot of confusion in normal everyday things. It deals with the front of the brain where as Alzshiemers deals with the back. It also deals with OCD compulsiveness. My mom has become a complete agoraphobic, hates to leave her room but likes visitors. She is constantly contradicting herself and saying inappopriate things out loud not like terets but just like,"I hate everything made by the chinese it's awful" what? There's her own logic to it. It also seems to make things magnify by 1,000. Situations are worse pain is worse. The Dr at the ALS Clinic in U of P phila said it does get worse with the ALS overtime, and I have definatly seen a progression. She isn't violent and will always know who we are. I will find out what head med's she's on and let you know, it's definatly better to be on them and she is better because of them. I'm sorry you have to be dealing with this as well. Oh and her energy level is affected too. She is exhausted. When I know more I'll let you know hope this was more helpful then deppressing. Joelle
 

joejoe75

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Mom's head meds

My mom is on Zoloft and Seriquiel for her dementia. The Zoloft is depression the seriquiel is more for the dementia bi polar. Joelle
 

Paul Wicks

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Dear all, the link between ALS/MND and FTD is increasingly being recognised by researchers. However, we still find that most doctors don't warn their patients its a possibility and many don't have systems in place to deal with it. We hope that will change in the coming years.

ALSA have an excellent guide for families on cognition, available here:
http://www.alsa.org/files/cms/Resources/FYI - Cognitive Impairment for Families.pdf

All the best

Paul Wicks
 
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