Als and FTD

[Dlightle]

My husband has been diagnosed with FTD and a few months later we received a diagnosis from Barnes in St. Louis that he has familial ALS. His dad died 20 years ago with this horrific disease , and his sister died in 2014 of ALS. My husband has the repeated gene C9orf72 gene which links ALS and FTD. I was told my children and their children have a 50/50 chance of inheriting the same disease.

The road is so difficult right now with my husband that I can't even wrap my mind around my children and the road they may or may not have to travel.

My husbands arms are affected right now, and he is showing more and more exhaustion. The FTD is showing its ugly head with bizarre behaviors. This once extremely intelligent man often behaves as if he were 6 years. He is on no medication for ALS as there's nothing that can help the disease. I go back to Barnes next week, and hope they can give me answers for the hallucinations at night, and delusional thinking during the day.

Is there anyone out there that has experienced bizarre , unbelievable behaviors with ALS and FTD.

My husband is 63 and they put him on social security disibility, within two months. I've had to stop working to be home with him 24/7. I'm not complaining but I came to this sight for some help, as this journey has no map or directions.

 

[Atsugi]

Man, Dlightle, I'm really sorry to read about your situation. Just know we're here for you. Somebody with FTD experience will come along soon.

 

[soonerwife]

So sorry to hear about your husband's dx Dlightle. You have found a great place for support. Welcome! I have no experience with FTD, sorry you find yourself here.

 

[lgelb]

Springfield, so sorry for what you are going through, and you have every right to vent here any time you want. I will let those with FTD experience speak to that, but there are drugs that can help, if titrated to effect and taken daily.

Best,
Laurie

 

[scaredwifetx]

Welcome Dlightle, There are a few CALS in this forum who have experience with the FTD. You will receive a lot of support here.

 

[affected]

I'm so sorry to welcome you here and to say that I experienced ALS+FTD though it was sporadic, not FALS.

The bizarre behaviours are difficult to explain, and you often feel like there is something wrong with you because it can be rather unbelievable.

So far as meds go, with your description it is often an anti-psychotic that works well to combat the hallucination/delusional stuff.

My husband had behavioural variant FTD but it manifested mostly with paranoia, rage and total loss of empathy. We did have some success with an antidepressant which took the edge of the rage, and helped him to begin sleeping again.

If you click on my user name beside this post and choose to visit my homepage there is a link there to information I have written about FTD and caring for someone with FTD that my be of help. There is also a fair list of links to more information I found really helpful.

I'm very willing to talk with you here about any of what is going on. I know it is very hard because I know that only people who have been through FTD have any clue what I am talking about. If you need to talk more privately just say so here and I will get the mods to send you my email. I often talk to CALS privately about FTD because one thing with this is that the person affected may well a surprising amount of cognitive ability say to look things up online and some care and sensitivity is often needed as well as privacy.

 

[JanYyc]

Hi. I came on to finally introduce myself and saw this thread and wanted to comment.
Can I say from a 34 year old mother of two diagnosed ALS/FTD patient, you are doing a fantastic job. I have a husband who advocates for me and gets me what I need as well. I know he is going to turn out to be the hero in all of this. One thing he keeps reminding me about is 'your not losing your intelligence. You may not appear as smart, but I know your smart.'
I'm not afraid to go crazy. I'm afraid I won't appear humble and grateful to the people I understand I should feel love for.
But I will always know.
So those are my worries for me.
I'm not giving advice, I just hope you can learn from my experience. You cared enough to create an account here to get advice. Your figuring it out.

 

[Dlightle]

Thank you Tillie! We came home from Barnes hospital and the dr has now put him on an anti-psychotic medicine which hopefully will help with the delusions and hallucinations. I looked at your very helpful website and videos which I will view again as this disease progresses. I'm also looking at ordering your book. This has become real very fast for me. Thank you for your reply !!!

 

[Dlightle]

Thank you for your kind reply. I feel so bad for my husband, and at the same time can get very frustrated. I have no idea what's going through his head as he daily looses part of his independence to the disease that rakes his body and mind. I pray I do not discourage with my words through these frustrations. I'm sorry for you, but what an awesome husband you have! How old are your children? Debbie

 

[affected]

I'm so glad they have started some meds. Monitor him well and if you are not happy with how he is going on them don't be afraid to follow it up if you feel there are side effects. I'm hoping they help give some real relief.

Do keep on talking here xx

 

[sunandsea]

Dlightle, Welcome to the forum but so sorry you are going through all that you are. My husband also has a diagnosis of ALS - FTD and has also exhibited some unusual behaviors. He often acts like a child, has a difficult time with word retrieval, and is extremely passive and quiet. We've had some hallucinations and fears but the bigger problem is memory lapses and cognitive decline. There are days he doesn't recognize me but fortunately, those periods don't last long.
The ftd piece of the disease is much more difficult for our family than the physical side of als (he is no longer walking and needs assistance with transfers). To see this once brilliant, vibrant, and successful man become so dependent and non responsive is heartbreaking. It does help to post concerns and read what others share. I hope the medication helps your husband, Mine is on something to help with memory as well as something for depression and anxiety. It's difficult to know if it is helping.
Take care and keep us posted on how you and he - and your family - are doing.

 

[adrivtham]

Dlightle, Hi just wanted to send you a sister hug.
My husband was diagnosed with familial ALS C9ofr72 as well. He has lost some of his cognitive capacities and is unable to walk and talk.
He never complains but he looks at me with a scared child eyes that breaks my heart in pieces.

 

[JanYyc]

Debbie,
My daughters are 12 and 13. They are dealing with things very well. I told them scientifically what is happening to me and how ALS and FTD work. They are very matter of fact like I am. I figured they can't be afraid of the unknown if they are educated.
I have noticed they take turns being sick from school. I'm learning its less illness and more keeping an eye on me. Home Care comes Thursday so hopefully they will relax more. I have another neurophysiology appointment in a week for a day of testing.
Hopefully that will ease everyone's minds. I I know I don't see the changes in myself.
I hope things are going smoother with your husband.

 

[MyNexus2U]

Dlightle,

Sorry that you find yourself here, but at the same time glad that you found us. I have FTD. It was suspected for some time but officially confirmed just a few months ago. I have put my wife and adult children through quite a bit. The worst part is I was really not aware that I was doing it. They would say things that horrified me and I had a difficult time believing them and accepting the reality that it was true. I generally become very angry, verbally abusive and act like a small child throwing a temper tantrum. I do not recall most of this behavior. I have been working hard with a therapist trying to identify any triggers that may be present. Stress, anxiety, and any type of irritation such as pain or noise. I seem to lose track of time easily. Sometimes I kind of freeze while getting dressed or being helped to and from my bedside toilet. We have also had to slow down our communication. Short and straight to the point and with simple instructions. ALS.org has some good fact sheets for healthcare professionals and some for caregivers on understanding and dealing with FTD. I sincerely hope that some of these tricks may help you.

Bryan

 

[affected]

Bryan thank you so much for sharing that information and for how it is from your side of things!