Old 10-13-2014, 11:35 AM #1 (permalink)
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Default FTD With ALS Advice

Hello to you all,

I have been reading the many posts of here for ALS/FTD and it seems that in a lot of cases the FTD follows the ALS and also a lot of people with this ALS/FTD seem to get quite bad tempered.
With my husband it is completely the other way round. I first saw signs of character change in my husband almost seven years ago, it then took a further 3 years for friends and family to begin to notice, another 3 years after that so total 6 years before he was diagnosed with dementia. A few months later he saw a Neurologist who along with his dementia plus his weight loss and muscle wasting did some more tests on him and finally diagnosed FTD with ALS, this was in September of this year. However, my husband is not bad tempered, he just gets slightly muddled at times, he has become very withdrawn over the years, finds it very difficult to concentrate on conversations etc and soon gets distracted, he is also quite unsympathetic and doesn't grasp emotions and worries, finally he has no interst in doing anything and no motivation what so ever. That briefly explains his dementia and the effects. His ALS is showing no signs of becoming any worse he is able to walk, use his hands, can talk, doesn't choke on his food the only signs he is showing at the moment is Muscle faciculations (sorry spelling) in all four limbs, marked weight loss, muscle waste and slight weakness in one hand and fingers. He also has breathing problems and by that I mean he can get breathless, and breaths rapidly taking 2 or 3 breaths to my one, he also uses his shoulders to help him breath. I am sure the diagnosis from the Neurologist is correct, but he does not seem to have the same symptoms as a lot of people with ALS/FTD. Does anyone else have or know of anyone with similar symtoms to my husbands?
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Old 10-13-2014, 01:54 PM #2 (permalink)
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Default Re: FTD With ALS Advice

Hi again Molly.

FTD can be nearly as individual in its onset and progression as ALS. Just as we can talk here
and describe our experiences of ALS onset and progression and everyone is different, at same time everyone has enough in common to see it is the same disease.

Same with FTD. I am happy to hear you don't have the anger and rage that can so often be found with FTD, it is so hard to live with. But you do describe so much that is typical of FTD, at the same time.

Most CALS can report that they noticed behavioural changes in their PALS before the ALS symptoms, this is very common. For myself, I thought that Chris was showing signs of depression over the 12 months or so before his speech started slurring. FTD at first can often be confused for depression.

One of the really frustrating things about ALS is that it presents and progresses differently in so many people. So it's hard to say that your husband is progressing in an unusual way. It's not really that unusual, it seems it is affecting his breathing muscles like his hand weakness. Is he using bipap at all?

Here is an excerpt on the common symptoms of FTD that may help. Remember the fronto-temporal lobe of the brain controls a lot of functions and the wastage may be in just certain parts of the lobe which will cause wide variation of behavioural impacts.

Damage to the executive system, often leads to:
* Socially inappropriate behavior
* Inability to apply consequences from past actions
* Difficulty with abstract concepts (the inability to make the leap from the symbolic to the real world)
* Difficulty in planning and initiation (getting started)
* Difficulty with verbal fluency
* Inability to multitask
* Difficulty processing, storing, and/or retrieving information
* Frequent “policing” by others to monitor the appropriateness of their actions
* Loss of fine motor skills like grabbing something with your thumb and forefinger more than gross motor skills like running and jumping
* Moody or “roller coaster” emotions
* Lack of concern toward people and animals
* Loss of interest in activities
* Unawareness or denial that their behavior is a problem
* Antisocial behavior associated with disinhibition
* Trouble planning for the future

This site might be helpful to you:
http://memory.ucsf.edu/ftd/overview/ftd

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Old 10-14-2014, 08:06 AM #3 (permalink)
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Default Re: FTD With ALS Advice

Hi Tillie,

Thank you for taking the time again to reply to my post. This FTD can be very hard to understand so thank you. Fortunately we are seeing the ALS Specialist on Thursday and as she also specialises in Dementia I think she will also be able to answer the thousand and one lol questions I have for her. Some good news is that my husbands seizure Doctor today has confirmed that he thinks my husband was probably misdiagnosed with partial seizures 5 years ago so we can start to wean him off the Lamitrogene and hopefully he will be completely off these meds by Christmas. This will leave him just on the one medication which is the Riluzole and I have to say my husband wants to stop taking these also. So maybe he will soon be medication free.
Take Care

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Old 10-14-2014, 02:17 PM #4 (permalink)
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Default Re: FTD With ALS Advice

Hi Molly,

I realise I didn't quite answer your first post, you asked about others having the same symptoms eg:
[ my husband is not bad tempered, he just gets slightly muddled at times, he has become very withdrawn over the years, finds it very difficult to concentrate on conversations etc and soon gets distracted, he is also quite unsympathetic and doesn't grasp emotions and worries, finally he has no interst in doing anything and no motivation what so ever. ]

Out of what you describe there, Chris experienced the withdrawal, lack of interest and motivation. I don't know if your husband says anything of why he is like this - for Chris a lot of it was paranoia. He would think everyone had terrible intentions, but would never say anything to their faces, just to me. Everyone from his/my/our friends to health professionals.

Unsympathetic and I describe it as a total lack of empathy. It was just awful, he lost all ability to care how anyone else felt or the impact of anything on anyone else. What I found distressing however was that he could pretend to still have some of these skills. So he would actually act out with the home care staff, then the way he would speak about them after was so awful that I would be embarrassed sometimes when they were here to see how things went compared to how he would talk to me later.

As his speech declined more and more and he refused to use a communication device (in all truth Molly I think it was too complex for him to concentrate on long enough with the FTD), he was able to communicate less and less detail of what he thought and how he felt and it was something of a blessing to me. I did not have to hear the awful tirades of paranoid garbage. But he was able to just look at me certain ways, or withdraw into sullenness for hours or days at a time to communicate to me that it still raged inside him.

I felt that he was trapped in a true living hell.
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Old 10-14-2014, 03:47 PM #5 (permalink)
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Default Re: FTD With ALS Advice

HI Tillie,

If is would be Ok with you can I message you, not sure ? if you can message on this forum. The reason I ask if I can is because I don't want to annoy anyone that has ALS thinking that I am taking over their forum with chats about FTD. It seems to me that their are not many people on here who actually have somebody who suffers from FTD with ALS. And thank you again for replying to my post.

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Old 10-15-2014, 02:51 AM #6 (permalink)
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Default Re: FTD With ALS Advice

It's no problem Molly, this section is for FTD, but you are right there aren't really many active people here just now dealing with it. It is a whole extra ball game!

You can't private message yet, but I will get the moderators to send you my email address so that we can talk privately.

I rarely talked about the FTD here when Chris was alive. I'm more than happy to talk with you!
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Old 10-15-2014, 05:45 AM #7 (permalink)
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Default Re: FTD With ALS Advice

Thank you vey much Tillie. I wil email you when I hear from the Moderators.
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Old 10-17-2014, 06:54 PM #8 (permalink)
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Default Re: FTD With ALS Advice

THANK you both! My husband was diagnosed only 2 weeks ago today with ALS-FTD or FTD-ALS (don't know the proper order) and it is so good to read two people who know what I see in my husband! I am overwhelmed in every way possible and everyday there is always something to deal with his cognitive and personality changes which I have noticed for at least a year. Personality changes came first, then cognitive, and then the weakness in his arms and hands, weight loss, loss of muscles. I could list 40 or 50 personality and cognitive changes, similar to your list above. I wish I could find some expert in Arizona who specializes in both diagnosis. It is all so sad as well.
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Old 10-17-2014, 09:37 PM #9 (permalink)
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Default Re: FTD With ALS Advice

I'm so sorry to hear this, but so glad you can find that there are others that understand what is going on.

Without that understanding I just don't know how I would have coped with the FTD side of things, it was far harder to bear than the physical side of the ALS.
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Old 10-18-2014, 04:49 AM #10 (permalink)
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Default Re: FTD With ALS Advice

Quote:
Originally Posted by 3Grandboys View Post
THANK you both! My husband was diagnosed only 2 weeks ago today with ALS-FTD or FTD-ALS (don't know the proper order) and it is so good to read two people who know what I see in my husband! I am overwhelmed in every way possible and everyday there is always something to deal with his cognitive and personality changes which I have noticed for at least a year. Personality changes came first, then cognitive, and then the weakness in his arms and hands, weight loss, loss of muscles. I could list 40 or 50 personality and cognitive changes, similar to your list above. I wish I could find some expert in Arizona who specializes in both diagnosis. It is all so sad as well.
Hi,
I am so sorry that you are having to go through this journey as well. Tillie, has been all the way through the journey so is a brilliant Lady to give advise. As for me, sometimes I'm a blubbering wreck, other times I am strong and can handle whatever is thrown at me. I worry about so many aspects of this awful desease, and need to try and understand what is happening. Take Care.
Molly x
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Old 10-18-2014, 10:50 AM #11 (permalink)
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Default Re: FTD With ALS Advice

Thank you Tillie! So far I react emotionally to the cognitive and personality issues that happen everyday. I react internally with overwhelming sadness. Externally usually I can hold it together and be very patient and then unfortunately I will lose my patience.
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Old 10-18-2014, 02:24 PM #12 (permalink)
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Default Re: FTD With ALS Advice

I think that if you can understand what is happening to their brains it becomes easier to handle the situations and not to lose patience. Well inside you may not feel terribly patient.

They cannot follow any logical sequence that involves executive functioning. This doesn't mean they have no intelligence, but it does mean that you can stand and argue until you are blue in the face and they simply won't follow your line, let alone if it touches on the paranoia and lack of empathy you can forget it. It becomes the easiest way to have the most awful things said to you in fact.

Once you begin to identify patterns of behaviour you can also begin to nip things in the bud and avoid situations developing.

Trying not to react back is a choice I made early in and especially once I realised FTD was the culprit. With the lack of empathy and paranoia that I was experiencing for example, if I reacted back it would trigger these quickly. I often just let him go, gave mild implicit agreement and held my tongue. Very often if you think carefully about it, there isn't anything real to be gained by winning an argument with them. So I would let him 'win', usually it was faster as well and I could get on with being a CALS.

I also did not want to spend the last of his life arguing with him and saying things I may regret once he was gone. I'm very glad now that I took this approach. Releasing the pressure by venting to others who understood FTD was my life saver.
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Old 10-18-2014, 03:13 PM #13 (permalink)
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Default Re: FTD With ALS Advice

Thanks Tillie. your advice means so much since you went through this horrible diagnosis combination! And so kind of you to pass on your wisdom to others!
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Old 10-19-2014, 12:35 AM #14 (permalink)
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Default Re: FTD With ALS Advice

Dear Molly and 3G,

After a long time away I stopped by the forum - because of the ALS Walk today in Tucson - yes 3G, I'm in Tucson. I am so sorry to hear you are both dealing with ALS/FTD. My hb had Bulbar ALS and FTD. He passed away in 2011 at age 62. May I recommend a second forum for you two. Please visit the ftdsupportforum dot com It's an excellent group of people who can help you deal with the dementia and behavioral issues.

Tillie has given you lots of valuable help here. Once I realized my husband's behavior was due to a disease, it changed everything. The anger left. Fighting or using logic is useless. Don't try. Agree with them and then go about your day your own way.

3Grandboys, please contact the Arizona Chapter of the ALS Association in Phoenix if you haven't already done so. Ask for Kim. She will share my contact info if you would like to get in touch. We went to an excellent neurologist in Phoenix who understood both diseases. A long drive but worth it.

To you both, you can do this. It won't be easy but there is still be some joy to be had.
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Old 10-19-2014, 09:36 AM #15 (permalink)
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Default Re: FTD With ALS Advice

Cereus, thank you so much! I spoke with kim on thursday and asked her to give you my number as she mentioned that she knew a kind woman in tucson whose husband died from ALS-FTD. She only knows of 3 with this combination. I would greatly appreciate meeting or talking with you you and listen to your advice and wisdom. I emailed her yesterday to remind her to give you my contact information.

Advocating and caregiving are a full time responsibility along with my own work as a healthcare provider. I remain in shock and overwhelmed with learning everything I can, reading every forum that I can, calling folks around the country for information, reading books on caregiving….I found a great book AARP Juggling Caregiving and Working. I am certainly not the only one!
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