Old 10-19-2014, 01:25 PM #16 (permalink)
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Default Re: FTD With ALS Advice

great to see you stop in Cereus. I never knew of that other forum, but was talking to other CALS on fb and I believe there is a new closed group there now for FTD/ALS as well.

Interesting that it hasn't been recognised well for a long time. It is now believed that 50% of all PALS have some FTD and/or at least some cognitive changes (I believe too they are now calling it fronto temporal degeneration rather than dementia which is more fitting really). The level of degeneration is as variable as the presentation of physical symptoms and wastage around the body.

I think that to survive after they are gone, you really need to get clear with yourself on not being drawn in to the behaviours. I know that for the first 3 months after Chris passed I was literally haunted by things he used to say to me. I've noticed this really easing off over the second 3 months.
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Old 10-19-2014, 09:11 PM #17 (permalink)
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Exclamation Re: FTD With ALS Advice

I am new to Forum as of today. I joined because my Husband was diagnosed over two years ago with ALS. There are no CALS Support Groups near me, so most of the time, I suffer in silence. Back in June of 2014 my Husband's Neurologist at the ALS Clinic told him that he was a slow progresser. That was a defining moment for him in that life has turned into a party train. He drinks champagne for lunch and has hired a "village" of people to take care of him. So many that I now do not know where I fit in as a CALS. He also hired a Personal Assistant while I was away getting our daughter settled into a new college and apartment in a new city. I was unaware and uninvolved in interview. I am not comfortable with this young woman that my Husband has now taken as his confidante. And, there is no privacy...everyone knows everything. I also believe he is suffering from FTD. I have noticed behavioral changes for sometime now. I have noticed a total lack of empathy for anyone or any thing. It is all about him and his party train. I envisioned the end of his life with me much differently. He has purchased expensive speakers and blasts music at every hour of the day and night, having no empathy for anyone sleeping in the house. He sits and spends endless hours watching YouTube videos and forces anyone nearby to watch them also. He discovered a band from NYC and invited them to our home for a concert last Friday. Many family members worked tirelessly for weeks preparing for this band's arrival. After concert, which turned into a major event, never did any of us receive a thank you. Most of the time he is angry and not speaking to me, and a simple discussion escalates into a fight. Very frustrating for me, since he can act normally around others. I am looking for help and guidance through this journey. This man is not the man I married 23 years ago. He was diagnosed with respiratory ALS and still is walking with the help of a walker. He uses BiPap constantly and next step is a trach. With right foot drop, he is still driving, which I believe he absolutely should not be. Help!
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Old 10-19-2014, 09:45 PM #18 (permalink)
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Default Re: FTD With ALS Advice

Wow, Libby! Hope you have done all the legal things- like getting medical power of attorney, etc. you might check with your Secretary of States office to see about requirements for suspending a drivers license or even talk to his neurologist privately. This has been discussed on other threads - but driving like this makes him liable for lawsuits in case of an accident. I am so sorry. You are not alone though, and can get support here. This disease is hard enough without the erratic behavior you are describing. Sure our guru Tillie will have some great suggestions for you regarding behavior.
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Old 10-19-2014, 09:48 PM #19 (permalink)
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Default Re: FTD With ALS Advice

LibbyLu,

I'm very sorry to hear of all you are going through. It's horrible but you are not alone. Please go to the FTD support forum website I mentioned above and join. It's not a replacement for this forum but an added place to understand the behaviors you are dealing with. The members are kind and helpful and it's well moderated.
These two diseases are rare in our immediate communities so it's hard to find local help. Today with the internet, we can find a lot of help with a click, all hours of the day.

You'll still need advice here because few on the FTD forum have ALS. There is a sub forum for those few though. Because it's an international forum, many call ALS, MND or Motor Neuron Disease. So if you see ALS/MND advice, it covers all.

Take care.
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Old 10-19-2014, 11:58 PM #20 (permalink)
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Default Re: FTD With ALS Advice

Thank you cheerleader and Cereus for your prompt replies with helpful information. I am so overwhelmed by what is happening in my household...have been on my knees nightly in prayer. I will check out FTD Forum Website for help. Hope to chat again. Blessings...
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Old 10-20-2014, 01:57 PM #21 (permalink)
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Default Re: FTD With ALS Advice

Hi Libby and welcome to the place no one wants to be!

A big difference between your husband and mine is that yours has full control of finances and if he has FTD this is very concerning.

I would contact your ALS clinic and ask for an appointment for yourself to go and talk about your concerns with his behaviour. They can help you work out a strategy for the short and long term.

Do you have the legal paperwork in place giving you power of attorney and guardianship?

I agree with Cereus that you might join the ftd forum as well to talk with more folk about the behavioural issues. It's so awful watching the person we love being taken right away from us
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Old 10-20-2014, 01:59 PM #22 (permalink)
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Default Re: FTD With ALS Advice

dang it, my post went to mod
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Old 10-20-2014, 06:53 PM #23 (permalink)
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Default Re: FTD With ALS Advice

Thank you Tillie...working on all of the above. My Husband is a Financial Advisor as well. I have trusted him for 23 years of marriage up until now. I am his Medical Power of Attorney and am working on Financial as we speak. I am new to forum and not sure how to join the FTD forum...help?
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Old 10-21-2014, 04:09 AM #24 (permalink)
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Default Re: FTD With ALS Advice

Libby apparently it is found at
ftdsupportforum dot com

that's written so that you would replace dot with a . and put no spaces

I didn't know about this place when I was looking after Chris!
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Old 10-21-2014, 04:10 AM #25 (permalink)
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Default Re: FTD With ALS Advice

Molly how are you doing?
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Old 10-21-2014, 09:30 AM #26 (permalink)
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Default Re: FTD With ALS Advice

Hi all! I am thinking of all of you as my life line! There is some incident with the FTD or the ALS or both every day. I write them down which helps me cope. I am doing better with patience and just agree with everything he says (he is weaving stories about neighbors of which he could not possibly know) or unable to do little chores because of weakness or dementia, et etc. Tomorrow is a meeting with his neurologist in which the neurologist will tell him no more driving. It will kill him, because he likes to go to costco or home depot daily to get one item. It will mean even more on me! i remain overwhelmed….
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Old 10-21-2014, 01:54 PM #27 (permalink)
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Default Re: FTD With ALS Advice

Good luck tomorrow about the driving.

That was a really difficult one here too. No matter that it was a doctor that pleaded with him to hand in his licence, wrote a medical certificate stating he was incompetent and unable to drive and spent half an hour testing him and explaining it to him ... he was furious with me, and somehow it was all my fault, and because I could only agree with the doctor ... well those who know FTD can imagine ...

He never did forgive me over the licence. It's a pity FTD doesn't usually affect the memory, he vividly remembered every single paranoid thing ...
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Old 10-21-2014, 05:02 PM #28 (permalink)
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Default Re: FTD With ALS Advice

Thank you, Tillie, for FTDForum information. I have read the previous two posts regarding licenses being taken away from PALS...My husband is on a ventilator 23 hours out of the day, has head drop, has right foot drop. I am waiting for the doctor to mention the possibility. My Husband is planning a cross-country trip early November, and I plan on staying home, because I am afraid to ride with him. I feel I am on Mars most often, because most of these decisions would be common sense ones. What am I missing?
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Old 10-21-2014, 05:38 PM #29 (permalink)
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Default Re: FTD With ALS Advice

do you have a relationship with alsa/mda/clergy? Some situations are really tricky to dance around -- remember was Tillie said about Chris never 'forgiving' her about the license ... I feel your pain and hope for the best ...

kind regards,

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Old 10-21-2014, 06:30 PM #30 (permalink)
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Default Re: FTD With ALS Advice

Libby you need to get control of the situation. First driving. Doctors in PA are mandated to report medical conditions that make driving unsafe. Sounds like His ALS is enough to disqualify him but so is any cognitive dysfunction. You need to call, email or go see the neurologist and tell him/ her all the behavioral issues plus the foot ,neck and respiratory issues ( they presumably know at least the physical but lay it out). Also contact a social worker either through your clinic or the MDA or ALSA. Get him off the road before he kills someone. Aside from the moral issues you would lose everything if you got sued.
You said he is a financial adviser? Is he still working? If he is again you risk lawsuits from clients once they find out what is going on.

I hope you have lots of support. Call on all you can because this is tough but if he is dangerous the longer you wait the more potential for catastrophe. My mom had FTD and ALS. I had to take the car. I know it is hard but it has to happen. Please don't wait!
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