Frustrated and wondering about FTD

[st123]

My Dad was diagnosed with ALS last week and referred to an ALS clinic. They couldn't make an appointment last week because the doctor was out of town for a conference. We expected an appointment this week, but I learned this morning that the doctor's father passed away over the weekend so he won't be in all week. The receptionist said the next available appointment is March 14. I told her that was unacceptable - and she said she would have the nurse call me. 6 p.m. and no call. Tomorrow I'm going to call the neurologist that referred us and tell him what's going on. It seems crazy.

Crazy... is actually why I started this post. One of the main reasons I can't wait for the appointment with the specialist is that I want to find out if he's suffering from FTD. I can't figure out exactly when the 'symptoms' started, but he's just not a nice guy anymore. It's causing problems as he's having a legal/financial disagreements with a guy that bought some land from him. I don't know what exactly to believe. Most of the time he is still very sharp, but sometimes the things he says just don't make sense and he seems to be making decisions that are either mean, spiteful, and/or irrational.

If he does have FTD, how long could he have been suffering with it before the was diagnosed with ALS? Is it possible that it could be several years? He told me last night that he thinks the muscle twitching has been going on for well over a year - he just didn't think it meant anything.

I also want to find out so much more about the these 'bulbar' symptoms. He can't seem to eat many things that he could eat just a month ago (maybe because his jaws are getting weaker?) and his speech is getting so bad so fast. Is it more likely that he has FTD if he has these symptoms?

Sorry it this is a confusing, run-on post. I seem to be having a hard time thinking straight the last week.

 

[Katie C]

Sorry moderators.. I'm about to make more work for you but I need to give st123 some homework....

PLEASE, st123, spend some time on the following websites:

Overview | Frontotemporal Dementia (FTD)

Dementia in Amyotrophic Lateral Sclerosis (Lou Gehrig Disease)

Don't just skim the front page... really dig in and read the websites. You will get some important information and many answers.

In brief.. yes, FTD symptoms can go on for years before any ALS symptoms show up. In fact I was just reading an article (I think from UCSF) saying they think it's possible that in the combination, the ALS may be a variant of the FTD. Until now the common belief was that the FTD was a variant of the ALS. Poor financial and legal decisions are not at all uncommon. The mean-spirited presentation is because FTD can take away the person's ability to feel sympathy or empathy.

As far as speech and swallowing.. it is not just his jaws getting weaker. It's also his tongue. Pay attention some time when you are eating to just how much work your tongue does.

These are quick, brief overview answers. An evaluation by a neuropsychologist or neuropsychiatrist seems to be definitly in order. Try to find someone familiar with FTD, as it is frequently misdiagnosed by well meaning professionals that have never seen it. But please please please start educating yourself with the above material.. sooner, not later.

 

[st123]

Starting now. Thank you!

 

[st123]

OK, I took 3 days off work last week after he was diagnosed and spent much of that time on the internet (found this forum!), but didn't read this info, Katie. Back to work this week and no idea how I'm going to keep up with my ALS studying

But seriously, thank you!

 

[Katie C]

Just do it a little at a time. You need to take it in pieces, digest it, and move on. It's a lot to take in all at once.

 

[st123]

OK, so I've been reading and reading and am pertty much totally depressed, but I'll get over it. While I thought my Dad was getting a little weird the past few years, I dealt with it by not dealing with it. I left him to his own decisions and actions with Mom and kept our interactions at a social level. Now that they're living with me, I'm findout out stuff I didn't want to know about their financial situation

Their house burned down last year (which is why they're living here) and the final insurance payments are just being made now. Dad has (what I consider to be) crazy ideas of what to do with the money. I don't want to see Mom destitute (actualy, other than the insurance money, she's already there). I reeeaaallllly don't want to be in the middle of their financial stuff, but I think I have to be. Dad seems totally 'sane', except he's not.

What can I expect at the ALS clinic appointment? Will they address FTD since he has the bulbar onset or will I have to raise the issue? Will they discuss it frankly with him?

 

[brooksea]

If you could help your mother to make a list of behavior that is out of his norm, with specifics and email that to the nurse in charge at clinic, they would have a heads up and that would make it easier to address the situation. That is what I had done and it was a big list! The nurse at our clinic was going to set him up for an evaluation, however, my husband decided he didn't want to go to clinic anymore so it was a moot point.

 

[Katie C]

You will definitly need to bring it up... and as CJ said, if you or your mom can do it in advance that would be hugely helpful. E-mail is good because you can tip toe around the confidentiality issues... you can let them know what's up without them having to acknowledge it! I would definitly let them know about odd financial issues as that is a big warning sign. If you or your mom (or both) could start keeping a notebook with symptoms/behaviors that seem not right, that will help your own memory too. As you are learning, an FTD patient can appear "sane but eccentric" so the more you can document the better.

 

[st123]

Thanks for the advice. His assistant e-mailed me a map and directions so I have her e-mail. I'll start a list. I haven't discussed it with Mom, yet, may try this weekend when we're out of the house. Maybe she's been wondering, too, and will be a relief to know it's part of the disease.

 

[Katie C]

I can almost guarantee it will be a relief. Glen and I were about a heartbeat away from splitting up before I finally learned about FTD. Knowing the reason doesn't make it better.. but somehow makes it easier.

 

[cubcake]

Another one of us with this double whammy. Wow. My heart goes out to you. It's a very tough road, but one that you are strong enough to travel. And, you're not alone.

 

[st123]

Well, took Mom out to dinner and brought up the possibility of FTD - had to explain it to her. She didn't jump on it, but I think it may be one of those things that she'll stew on for a bit and then have more questions or comments.

 

[brooksea]

Good luck!

 

[st123]

Thanks, CJ!

 

[momap53]

As you're finding out there's a whole lot to take in when first confronted with ALS and FTD. I'm sure your Mom is reeling too. Hope you were able to get the appointment moved up. Waiting is so difficult.