Dad with possible ALS/FTD?

[jtryhorn]

Hello All,
I'm not sure what to think at the moment, I've been reading these forums for days. My father had what everyone presumed was a stroke last spring. The CT machine was broken though. They just assume it was a stroke because of the loss of speech. Although, thinking back he was slowly losing speech. Not over night like perhaps you would with an actual stroke. He's having trouble speaking now quite a bit. The words aren't there. Just after Christmas this year he's had these crazy chronic yawning fits. I mean crazy to the point he's crying and frustrated and hitting himself in the head yelling just begging for the yawning to stop. And he started really clearing his throat a lot. Mom said that that got better but he's starting to choke on snacks like popcorn and stuff. His arms and legs seem to have not changed at all. But his behavior has. He's very inflexible and gets upset when he has to do something he doesn't want to. His emotions are not there. He doesn't think to hug my mom anymore and things like that. He still smiles when he sees me or my kids. I think the strange behavior happens more with my mother as she is with him more often. She is upset and says this all doesn't seem to be normal stroke behavior. I see all the people on these forums who are typing and it scares me because Dad cannot read or write or type now. It would be impossible. He was never good with computers anyway. Typing would have been hard for him, he never would have been able to find the letters anyway. I'm worried this is ALS and FTD together. In 3 months he's lost 15 lbs. What do you guys think?
Thanks
Jennifer

 

[notme]

HI

The absolute first thing you and your mom need to do is get your father to a competent neurologist. It's absurd that they would 'assume' a stroke without a CT or MRI to diagnose it. There is an old saying that is apt: Assume makes an ass out of you and me. The docs shouldn't have 'assumed' anything!

The doctors dropped the ball by not being sure of their diagnosis. A stroke would cause sudden onset of symptoms, certainly. Usually one sided paralysis--though that varies based on where the problems are. A left-brain stroke, if I'm remembering my anatomy correctly, affects speech.

He likely needs an MRI at this point. A CT might not be specific enough to see if there is any dementia activity going on, though they may start with CT.

If he had speech slowly deteriorating, then it sounds less like a stroke. Also, if he's now having trouble swallowing--he may be having trouble getting enough oxygen too. That could be a cause of the yawning--his bodies way of getting more O2 and blowing of Co2. (I'm NOT a doctor--this is pure conjecture based on the symptoms you describe)

So-it is POSSIBLE that his deteriorating mental capacity could be a simple lack of enough oxygen. That can certainly cause mental changes that can become chronic if undiagnosed and untreated.

If they have them in your drug stores--they make an oxygen saturation monitor that is about $40 bucks here in the states. If it's put on a finger, an O2 saturation should be somewhere in the 90's. Below 90 is certainly cause for concern--which would mean he needs seen sooner rather than later. It might help to have this record to get the doctors to listen.

You also don't say if he is on any medications. Various meds can cause reactions in people as well. Lots to consider with very limited information. Please keep us posted!

ALS is, of course, possible--but there are other possible things to be ruled out first!

 

[Chase_Corin]

Your Father's case sounds complicated like my dad's was.

My dad had had pervious nerve damaged caused by arthritis build up on his spine that choaked off some of the nerved that controled his legs. So we never saw the leg weakness that is associated to ALS. We just thought it was his normal leg weakness. Until his arms started being effected we never thought there was anything wrong.

Instead of yawning my dad has crazy sneezing fits that keep him going somtimes 15-30 times in a row to the point where he is soooo frustrated he cries. Dad also always took a longer time than anyone in the family to eat he always said it was because we inhaled our food and he wanted to taste it but it got worse and worse. Somtimes it would take him as much as an hour to eat a meal and from that if he didn't chew really well pieces would get stuck in his throat. He blamed this on scar tissue that he had from a tracheotomy back in 1997.

Since getting his diagnosis in November 2010 we now know that the things we saw as basic "ageing" were not that at all, they were signs of ALS. The arm weakness and sluring was what brought dad to persue a diagnosis with added vigor. We thought it was Lyme disease and dad pushed to have every test available. His symptoms had been going on for over a year before his final diagnosis and he had given up driving at the same time because he could not 'trust' his muscles to respond when he needed them.

I would encourage your father to persue his doctor for testing to disprove or prove ALS, at least rue our Lyme disease which is a close mimic of ALS. As we all know there is no test for ALS, it's a process of ruling out all the other possibilities. You need to be proactive with your doctor and insist that there is somthing wrong with you, weather that means seeking a specialist, or a second opinion. Whatever....

We live in Canada too and I know some of the doctors out there are reluctant to delve into somthing as complex as an ALS diagnosis but if your family doctor can't insist on seeing a nurologist your doctor may have to refer you but you have te right to inist upon treatment. Be forthright and write down anything you notice with symptoms and such and be dillagent.

Somtimes you need to fight for your health, don't give up

 

[rcharlton]

Hi Jennifer

Sorry to hear about your dad.

I'm moving your thread to the "Do I have ALS? Is this ALS?" You will get more feedback there, although notme and Chase_Corin have already given you great advice.

Take care

Richard

 

[Phil's wife]

Jennifer,

I hope your dad does not have either ALS or FTD, but my husband's ALS started in his speech (bulbar) and the first thing they checked was a past stroke. My husband also has FTD but only I could see it early on. I see why you are worried and I agree - get him to a good neurologist. Try not to worry too badly until you know for sure.

Keep us posted,

Stephanie

 

[jtryhorn]

Hi Stephanie,
Thanks for responding to my post about my Dad yesterday. We are so unsure and testing is not scheduled for months. I think it started out late last spring. Dad was a little dizzy standing up. Maybe some nausea, not much though. I remember going home and looking up vertigo, my parents don't have a computer. Then nothing. Then in July my mom said he was acting funny. Just staring off into space for a few moments. Almost a second too long. Then he would talk to her and say "what where we talking about?" mom just thought it was early old age. Finally we all convinced them that he may have had a stroke and they should go to the doctor. With only 2 chambers working in a 16 chamber Cat scan machine dad was said to have a stroke. He said he remembers the day. he was at the grocery store and he felt funny behind his eyes and that was that. Well, with a stroke your speech is supposed to get better or stay the same. He's having more and more trouble. But he's not really slurring. Some words are not there and some are mispronounced. No slurring at all. This brings us to late autumn and his friends are starting to notice his speech etc... then to Christmas, he's really tired, going to bed at 7:30 pm. Now he's lost about 15lbs and that never happens. Also more than anything it's the chronic yawning. Mom says that he's so frustrated, he cries about it. then it was throat clearing and that's gone but popcorn gets stuck etc...but the yawning have never ever stopped. That's the scary part. And the rudeness and crying or laughing at weird times. Sometimes he acts like a child. But there are no muscular issues at this point. No twitching or anything. Mom cried the other day and says she know in her heart that something is really wrong. She says he gets this blank look in his eyes like he's not there. She recognizes it from when her mother went off the deep end. It's so early, it's months away from diagnosis. We are just waiting. Does this sound similar to your husbands story? It could be primary progressive aphasia or frontotemporal dementia.... I don't know. What's scared me though is the yawning and the apathy and inflexible personality and the speech issues. I'm sorry about your husband. I cannot imagine what you are going through.
Thanks
Jennifer

 

[notme]

Lord, hon, insist on getting him in sooner. There's no good reason to wait months for an appt. If you have to, go to an ER with him. There has to be a way to get seen sooner than 'months'--even in Canada, aren't there?

 

[Cereus]

Dear Jennifer,

I haven't been online here in a quite a while. I just read your posts. While your father's symptoms are very similar to my husbands (My hb had Bulbar ALS and FTD), there are many diseases with similarities. You need help from a neurologist with experience in both diseases. Expect a long diagnosis process. They have to test for and rule out many possibilities. This is the most difficult time, when you know something is wrong but have no idea what or why. I'm so sorry but hang on, you can do this. Your mom is lucky to have you helping.

As far as coping with your dad, here are the things that helped me the most:
Routine - a regular schedule helps tremendously, if he wants dinner at 4 and bed at 7, that's fine.
Agree with him - never try to use logic, agree with everything he wants as long as it's not unsafe.
Don't tell him about appointments too early - he'll worry and obsess.
Research foods for dysphagia - there's a lot of info and help. Add fats, butter, olive oil, gravies, etc to his diet. Sorry but no popcorn.
Love him as he is - enjoy his new child-like behaviors, treat him with respect, dignity and love. He cannot help any of his behaviors. It's not him, it's not you or your mom, it's a disease.
Take care of yourselves - you and your mom need time away from him. Even a few hours a week with friends, go for a walk, get some sun and exercise. You have to be as healthy and strong as possible to do this. For him.

In the meantime, if she hasn't already, encourage your mom to make sure legal and financial issues are in order. Do it now so it's not a problem later on.

There is an online FTD Support Forum. Google it. They helped me a lot with everything. This forum is great as well.
I wish you the best. Your dad is lucky to have you!
Paula