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chriswhit44

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Jun 23, 2010
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16
Reason
Loved one DX
Diagnosis
07/2009
Country
US
State
OK
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Tulsa
Does anyone's loved one exhibit a very high anxiety level when it comes to ALS?

Obviously being diagnosed with ALS would cause anxiety... but I am talking about much more then that.

My Mom has levels of anxiety that I have never witnessed before. She checks her mailbox 4-5 times a day, even after she has already gotten her mail. She walks around the house making sure lights are turned off. Before she lost her ability to eat... she would smack like 4-5 sticks of gum at a time. She shakes her leg, non-stop, while watching tv or really just sitting there. She worries constantly about little things. Not dying. Not her health. But just little trivial things.

I keep telling her to relax and take it easy. I reassure her that everything is fine and that I am there for her. We even give her an ant-anxiety medication through her peg tube but nothing seems to matter.

Wondering if anyone else notices these things in their ALS loved ones?

The Dr. told us that she probably has a slight case of demensia... but didn't seem to worried about it because... really what does it matter at this point.

I just wanted to know if this was common among other ALS patients.
 
hi, i have ALS n also suffer from high anxiety. my son is always telling me to chill.
 
oh yeah. Glen's anxiety level is at times epic. They tried Atavan... BAD idea.. he is one of a "small number" who have a paradoxical reaction. If the doctor mentioned dementia, I would do some research on FTD dementia, and ask for a referral to a neuropsychiatrist, as it WILL complicate the treatment for ALS. You can also check the UCSF website for information on ALS related dementia. There are a few of us on this forum whose PALS deal with what our neurologist refers to as the double whammy. We'd be happy to answer any questions.

For the record, we have had excellent results with Seroquel.

Good luck!
 
I hate it when doctors have the attitude "what does it matter at this point?" ALS is not cureable, but it is treatable. It is amazing how different doctors view this so differently. We have found a doctor who believes it is treatable, so tell that doc that you want it treated. She shouldn't have to suffer from that type of anxiety. HUGS Lori
 
I'm sorry to hear this about your mother. I'd have to agree with the doc on this probably stemming from FTD. Maybe his sad remark of "What does it matter, anyway?" was just a very bad way to say, "I am sorry, but there isn't anything that can be done for it." (FTD)
 
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Not really anxiety, but my nerves have been shot lately. Basically I feel like I have drank a few pots of coffee. I get the jitters. A zanax seems to tone it down some.
 
Hi Chris, my husband has the "double whammy" which includes Frontotemporal Lobe Dementia. About 25 or 30 percent of ALS patients are affected with this. In fact before ALS was even considered for him, two neurologists diagnosed him with FTD. It was only in an examination from an Ears, Nose, and Throat specialist my husband went to see for a deviated septum, that fasciculations were found in his tongue. He sent us directly to yet another neuro who did the EMG and confirmed Bulbar ALS w/FTD. Imagine that - we thought we only had FTD to be concerned about.

From our experiences, it absolutely DOES matter about the FTD. After my husband could no longer speak, he would sometimes indicate answers yes for no and no for yes. So we had to scrutinize everything because of not being able to communicate effectively. He also began to take his medications incorrectly. After we had to take his car keys away from him, he would take off walking and wouldn't let us know he was leaving and we would have to take off looking for him. We were cured of that after a couple of times. He escaped to Walmart one day and without being able to speak, convinced the people in the Auto Dept to put a tire on the car. That day cost me $200 because he put the cost on an old account that didn't have money in it. Of course after this episode, we couldn't leave him alone anymore. There would be times he would seem perfectly normal.

Your mother may not have FTD, but it wouldn't hurt to research it as Katie says just to be aware. If there is medication that can help, it would be worth looking into. My husband's neruo had the same attitude, but he wasn't the one dealing with it. I wish you well....sorry for the long post everyone....
 
Hi Chris......oh yes....for sure my sister has a high level of anxiety. She has had ALS symptoms for 6 years now, but was only just diagnosed in July 2009. At first, we didn't know if it was symptoms from ALS, or symptoms resulting from anxiety. We are still dealing with this on a ongoing basis. London University hospital just did an ultra sound on Gwen's heart, as she is now experiencing shortness of breath. It could be her heart, that is causing the shortness of breath, or it could be another symptom of anxiety. We certainly don't make light of all the anxiety she has had, as sometimes, the symptoms caused by this, are worse than the ALS symptoms. My sister is on Ativan, and it has helped, but I don't think it always works for her. We are going to revisit this in the next couple of weeks. I'm sure there is other medication out there that we haven't tried yet. You and your family are in my prayers......Laurie Staller

p.s If you find some meds. that really help, please let me know.
 
Judy... I'm sorry, I couldn't help giggling a little at your Walmart story. Glen's thing was if he answered the phone and it was ANY kind of charity, he'd pledge to it! We got "lucky" in that because of his hands developing issues early, a couple of good dead bolt locks, and a couple of baby gates with clip locks solved the "going for walks" issue. We have audio and now visual hallucination issues, and sometimes my rather warped sense of humor gets in the way. The other day he was trying to unlatch the baby gate to go up stairs, and obviously looking for something up there. When asked why he needed to go up, he said there was a "beautiful creature" up there.. and the first words out of my mouth were "Actually, the only one up there is Kev, hardly a beautiful creature!" Kevin is our 25 year old son. He still giving me a hard time. As it turns out, we think the trigger was the Avatar dvd cover sitting on the kitchen table.

You guys just make me appreciate our neurologist so much... he's the one that searched through the kaiser system to find a psychiatrist that would work with us! The anti-psychotic Seroquel has been just a HUGE help along with Celexa for depression and temazapam for sleep. Tried Atavan for anxiety but it made things worse.. now we adjust the Seroquel when anxiety seems an issue.

Also... shortness of breath could be a weakening of her breathing muscles due to the ALS, so make sure they check that too.
 
Hi Katie, this is what I love about this forum - I learn so much from so many. Everyone's adventure is different, but I learn something from each. Yes, the Walmart adventure was something else, and when we got over panicking, we laughed our heads off including Jerry - he was so proud of himself for getting one over on us. Jerry liked to answer the phone too. One day I stayed home from work and UPS delivered a modem he had ordered from Comcast or somewhere. About $65 was added to the account. You could only pretty much understand yes or no from him, so I guess the caller got a yes and we got the modem - I sent it back. We never ran into hallucinations, none I can remember anyway. Everyone take care....and Chris, I hope you can find some help for your mom's anxiety.
 
Hi Chris,
I'm sorry to hear of your mom's difficulties.
We are another "double whammy" family. My husband was diagnosed with Bulbar ALS/FTD Dec 2009. He has "fixations", not really what I would call anxiety. It's OCD-like. The water bucket for our horse, the water bowl for the cat and dogs, his milk glass all have to be to the brim. The mail is a constant worry. He checks our online bank statements continuously. One that included a refund has been a worry for 4 days now. Other odd behaviors such as being overly friendly with strangers, addicted to coupons, hoarding, grocery cart aggression and the like are pretty much over because he can barely speak, has little energy to go out and cares less. It's easier on me but sad to see the decline. Each case is unique and pALS respond to medications differently. Maybe you can redirect her attention when she gets "stuck" on something. Is there something you can give her to do, say folding laundry or some chore that she can do to use her energy in a positive way? My husband sweeps the driveway and waters the trees and plants daily. It's not necessary but the house always looks great and he's proud of it.
All the best.
PC
 
OK PC, I have to admit "grocery cart agression" made me chuckle a bit. Glen still feeds our dogs daily... except that now he gets up at 4:30 in the morning to do so. I just had to adjust to the fact that the dogs didn't really care so I shouldn't.
 
Y'all's posts remind me while Jerry could still drive and walk he would wake up super early on Saturday mornings, go to Walmart (he had quite the adventures there) and buy a pound of bacon and a dozen eggs. He would come home and cook all of it. That wouldn't be so bad, but we were the only two at home and he would always burn the bacon. He would just grin at me when I asked him why he kept doing that. It took a few Saturdays scratching my head and smelling burnt bacon to finally figure out something wasn't quite right - little did I know....
 
Remeron and Ativan works for me and the odd Merlot doesn't hurt either.

AL.
 
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