I'm still struggling with my partners "other symptoms". He is always a level of confused. He gets dizzy when watching someone talk. He gets dizzy often like if someone is moving while talking he can't look at them. Memory has been a slowly progressing problem. I don't know if its recall or memory anymore. But almost every movie we watch is new to him. He's starting to forget real memories and its really scary. Panic attacks are associated with any type of decision making. His speech has always been the big issue and its getting worse. He's having more throat spasms now.. I can feel his twitches all over his body.... however he has only had weakness in his limbs after over use.
My concern is that he is avoiding planning long term. Since his bulbar onset ALS diagnosis in Sept he's depends on me a lot to make the decisions for him. He admits to struggling more and more with memory. I think I was told memory doesn't have anything to do with FTD. Just being honest these "other symptoms' are affecting our lives. So I have become more and more obsessed with trying to figure out what's going on with him... Its the most frustrating thing when even his family disregard it. Everyone says "that's not a symptom" or "I think he does just fine" We are together 24/7 and have been for the last 6 years so I know this is progressing right along with the speech/swallowing/etc. His son's are starting to recognize his confusion when talking to him, but again disregard it. I just want to be aware and ahead of the game if this is going to continue to decline. We all need to be prepared.
I'm sorry... I got started typing and couldn't stop. He goes back to the ALS clinic in a couple weeks. So I will write down every bother some symptom and ask detailed questions. I will park myself at the clinic till I get some answers.
When you go to the clinic, yes document as much, especially showing triggers (like you described to us) and patterns of behaviour. They can test him for FTD. If the FTD is progressing, there can be memory problems.
The panic and inability to make decisions is quite typical. For me the mental/emotional decline of my husband is far more distressing than the physical.
I believe some clinics can help dia gnose this by good discussions with the CALS. His memory issues should be fairly easy for them to test out.
I am sorry for what you are dealing with. For what it is worth one of my aunts had psp ( an extremely rare manifestation of our genetic defect). It looked nothing like bulbar ALS. My mom had ALS with FTD and did have memory issues early in her disease. I know that is not usual but as they say every PALS is like a snowflake- unique.
Tillie is right the more specific examples you can give your clinic the better they can help you
The brain involvement should be thought of in the same way as the outside physical wastage you can see.
If parts of the brain are wasting, it will depend on where that onset is and how fast the deterioration happens as to what symptoms and behaviours you will see.
So just like we can line up 5 PALS and find similarities and yet huge differences in how ALS is attacking their bodies, the ftd can take different forms and can progress at different rates.
It also was not recognised much for some time, but it is well recognised now as being a part of ALS. I believe the stats say that around 50% of bulbar onset have some degree of ftd, and lower % for other onsets.
To be honest it has helped me deal with it by accepting and understanding that his brain is wasting too. It's not 'him', it's yet another set of symptoms. I can also help prevent some triggers now and we have some good days. It takes a lot of energy from me however to create those good days.
Also since I got my husband onto anti depressants the rage, tantrum outbursts have subsided. He doesn't seem to go as wildly nasty. He does cry more now, but the upside is that he seems then to say more what is really wrong, rather than just flying off in a rage blaming me for everything, or the equipment or whatever.
Patterns are the best tool. Every PALS and CALS are struggling with huge emotions from this disease, but ftd will show you patterns. And you are right, others often don't see patterns, they only visit here and there, and the worst for me is if they start to stick up for him, making excuses. I don't usually say much to others about the ftd side of things. In front of other people very often he is bright and positive and all is good. So if I were to say stuff it looks like I'm being negative or not understanding him and his situation.
If someone does witness behaviour, then afterwards I can gently say, yes he gets like this at times.
My PALS will also sulk and withdraw sometimes for hours, sometimes days. I don't always manage to find out what 'I' did 'wrong' to 'cause' it ... :wink:
Just an update... Everything I brought up was disregarded....again. I figure if that's what's happening time will tell. So until then we will just deal with it. They did ask him about taking Rilutek. I was wondering about side effects. They said he appeared to be progressing slowly and if that's the case I personally don't think I want him on any medication. They also scheduled him for another EMG... Yuck.
I would find a new clinic. Or just a savvy internist or neuro. There is nothing magic about an "ALS clinic" or "center" if the staff just regurgitate one script. A new EMG is not normally indicated unless another dz is suspected so I wouldn't just subject him to that unless they can justify further.
I agree with what has been said already - EMG without good cause is not a big help, and Rilutek disagreed with my husband and he became so withdrawn and 'dark' on it. Honestly after 3 days off it I realised his eyes looked brighter (and I hadn't realised they were dull), and every day for another week then there was a visible change in him as well as mental change.
You NEVER have to put up with being dismissed or disregarded. If that is what's happening, you need to find other providers. Because my fears and observations were dismissed, it took YEARS for us to get a diagnosis... Had he been on the right medications soon enough, we could have spent at least some of that time making memories and actually enjoying each other. I was told he did not have dementia. I was told that my son and I were overbearing and our personalities were too strong for him. Once I found the right neurologist that all changed. Please don't feel you just need to accept this! Good luck. (and personally.. I don't know that Rilutek is worth the money, especially when FTD is involved) Oh, and yes, FTD, while not primarily a memory issue, can have some effect on memory.
How very frustrating! We do have one physician in my clinic that simply does not listen to me or my husband. So I told the clinic coordinator I wouldn't come if he was covering clinic. They don't know enough about the disease and nothing should be discarded.Sometimes it's a little easier to get listen to because I speak medical. But I agree with your approach of writing everything down Systemically. Think of it in terms you can measure, for instance six weeks ago he could balance his checkbook and now he can't. Four weeks ago he could read the full article in the paper and now it confuses him. I don't know if this is any help, but it comes from years of working with physicians. Sorry are being ignored