New to Group

[cookimonster]

Hi,
Pam here. My husband Jim was diagnosed in January(bulbar onset.) Has lost most of the use of his hands and very little speech left. As he loves to say when he's asked how things are going he's "Still walking". He still has a great sense of humor.
He's also got some FTD going on...so things get pretty interesting here on the beautiful St. Croix River in Minnesota.
My question today is... well, I actually have 2 questions...
the 1st one is about teeth chattering. Does anyone have any ideas on how to contend with it. Are there any meds that help. Does anyone know of any sites that explain why's and where-fors? Is it part of the fasciculations deal?
The other question ...are there any blog sites for PAL's with FTD. I see in the statistics that about 30% of PAL's have FTD symptoms but I never hear people talking about it.:???: I'm looking for some support and for ideas of caregiving for these symptoms.

 

[Nikki J]

Hi and sorry to welcome you

The teeth chattering is almost certainly clonus. Baclofen may help a little My sister had it very badly but nothing seemed to help her

There is a section here on FTD but people mostly post in the CALS section about it as you will see when you start browsing threads Feel free to ask questions. There are a number of us here who have or had loved ones with FTD/ALS. My mom had it.

 

[Narrowminded]

Welcome Pam. I'm so sorry you've had to join us, but this is a wonderful group of people. As Nikki mentioned, ask away because others may have gone before you and can help with answers and others my be trying to figure out the same things.

Sue

 

[affected]

Hi Pam,

That teeth chattering is clonus and was one of my husbands earlier symptoms. I remember the neurologist, on diagnosis day, kept bringing lots of student doctors in to have a look at him trigger it with the reflex hammer.
Chris didn't like side effects of Baclofen, the clonus did settle as his muscles failed altogether. He would also experience jaw clamping.

My Chris was also bulbar onset with FTD. He was rapid progression as this combination can be.

If you click on my user name beside this post, and choose view my home page I have pages about FTD and caring for someone with it and other carer tips.

The stats now say that at least 50% PALS have some degree of cognitive decline. The more they now recognise and look at FTD, the more evidence of it they are finding, at least in milder forms. For many PALS it is a decline towards the end mostly of executive functions and maybe language. For others it is a dementia type effect, particularly behavioural and may start well before the ALS symptoms.

There is a forum section about FTD here, and a search function at the top of the screen. But feel free to just ask questions xx

 

[soonerwife]

You have come to the right place... Lots of helpful people here. My husband also has bulbar onset. He also shows signs of cognitive decline. He doesn't have the teeth chattering though.

 

[lgelb]

Welcome, Pam.
Sorry that you find yourself here.
Is the teeth chattering related to feeling cold, stressed or on its own?

Best,
Laurie

 

[cookimonster]

Hi and sorry to welcome you

The teeth chattering is almost certainly clonus. Baclofen may help a little My sister had it very badly but nothing seemed to help her

There is a section here on FTD but people mostly post in the CALS section about it as you will see when you start browsing threads Feel free to ask questions. There are a number of us here who have or had loved ones with FTD/ALS. My mom had it.

Thanks Nikki...I am so sorry for your loss'. I will have many more questions I'm sure.
Thank you for reaching out

 

[cookimonster]

Welcome, Pam.
Sorry that you find yourself here.
Is the teeth chattering related to feeling cold, stressed or on its own?

Best,
Laurie

Hi Laurie,
It's a little bit of everything. It used to be just in the morning. I thought it might have something to do with blood sugar. But I have noticed in the last week, it's almost all day. Yesterday, the only time he wasn't chattering was when he was napping and then finally when he had gone to bed for the night.
Now I have a name, thanks to this group. I can at least research.
Thank you for reaching out

 

[Nuts]

Hi Pam, and welcome. As others have said, you can get a lot of information about FTD here. Tillie's website is also a great resource. Is Jim being seen at a multidisciplinary ALS Clinic?

Becky

 

[cookimonster]

Welcome Pam. I'm so sorry you've had to join us, but this is a wonderful group of people. As Nikki mentioned, ask away because others may have gone before you and can help with answers and others my be trying to figure out the same things.

Sue

Thanks Sue.. Already learning so much. I could get lost for days on these threads....
Thanks,
Pam

 

[cookimonster]

Hi Pam, and welcome. As others have said, you can get a lot of information about FTD here. Tillie's website is also a great resource. Is Jim being seen at a multidisciplinary ALS Clinic?

Becky

Good Morning Becky,
Yes, Jim is a Veteran and is being seen at the SCID Clinic at the Minneapolis VA. A fabulous team. We are lucky enough to be in a state that has 4 centers. And we started at Mayo and also had one clinic visit with the U of M. But by far the best match for Jim is at the VA.
He has already had his feeding tube placed and except for a few really high calorie Malts and a taste of food here and there, is being totally nourished w/ IsoSource and Nurturer1.5 AND he gained 2 lbs.:smile:
His speech is almost totally unrecognizable. He has an iPad w/ an app that speaks for him but he is reticent to use it as his hands are a problem but we are working on it as it is our only way of communicating , short of pantomiming(which can be fun...)
Jim was Chief of Public affairs in the Pacific Rim while in the Army so communications was his forte'. It is so frustrating to see this "man of letters" not to be able to communicate. Some of this, I fear is FTD related as I think reading is difficult for him. I am now going to try and find more FTD threads.
Phew! that was a mouthful, Becky! I'm relatively new to this sharing process...Thanks for being here,
Pam