My husband had symptoms of alzheimers starting at age 57. He couldn't remember how to get from our home to the gas staion. He wasn't able to understand simple directions. The physical symtoms of ALS showed up when he was 59. He died May 29 this year. The doctor said the confusion was a form of ALS with dementia and the first symptoms are usually mistaken as alzheimers. If your loved one is having twitching check it out.
My husband was complaining he had AD for over a year and I kept thinking it was just normal aging and then he developed the twitching and that was when we started checking things out. He would have visible twitching like you do when your eyelid twitches, on his arms, legs, etc. He also complained of the feeling of his skin "crawling like something under the skin". I searched on the Internet and tried to eliminate diseases by symptoms and I thought sure he had ALS. The Neuro eliminated it first off.
My AD husband has complained of his feet feeling "like he is walking on marbles" and has to have soft insoles and complained about hard floors, etc. Anyone else with bottom of feet tenderness?
Judylyne, thanks for your input about Alzheimer's and ALS. My husband's brother died with ALS. Now that DH has been diagnosed with AD, your statement makes me wonder. No twitching yet but will keep your information stored away as something to maybe look for. I had no idea there was any relation between the two.
My DH early on complained so much of tenderness of his feet he would not wear any shoes. this was in the very early stages maybe '99. i went thru dozens of shoes trying to find one he would wear. and he complained to of hot pain and burning in his legs. the twitches hes having now are slight and more worrisome are the myclonic jerks associated with brain spasming. the drs early on said he had definate vascular dementia and scarring from TIA/or mini strokes.. they never suggested - ALS but did say Vascular dementia w/AD. he does have alot of the twitching and has had even before the AD..makes me wonder too but so far he doesnt have any of the motor skills or speech issues... divvi
divvi- I think the ALS symptoms would have already progressed in that many years. Isn't your husband the one like mine with Parkenism w dimentia and VD? My husband has some jerks now but he doesn't have ALS. However, evidentally some symptoms of the brain diseases overlap.
I have been "lurking" here since an Alzheimers diagnosis in March and I am very grateful for all the support that you have (unknowingly) given me. But after reading judylyne's post I felt that I should speak out as that is also my husbands situation. ALS was diagnosed last week and like her husband, the dementia symptoms began at age 57, with the physical symptoms coming on 12 months ago (age 59) and worsening rapidly in the past 6 months.The twitching (fasciculations) and muscle atrophy began in the left hand, spread up that arm then moved to the other arm and then both legs. The physical symptoms always appear after the dementia onset and ALS dementia is a well documented disease (according to the Neurologist) It is heartbreaking to watch what is happening to him, the physical and mental deterioration together are difficult. I come to this site many times a day, there is always an answer here and you all give me the courage to keep going and the wisdom to (try) to do all the right things to help my husband on this dreadful journey.
judylyne, thank you for your input. I hadn't heard anything about this before. I have a dear friend whose son has ALS, only in his thirties. Fortunately, he does not have any cognitive dysfunction. Even so, it is heartbreaking.
I am so sorry for your loss ... so very young.
Cassie ... welcome to you, too. But oh, my, such a very sad situation!
Lmohr - we're on the same page again. In the last few days my husband has waked up each morning saying that his feet hurt, that they are burning.. and then the walking is ever more difficult. He's getting so he can't manipulate the walker reliably. After a shower (he still wants one of those every morning and can manage by himself with it) he never mentions his feet again, but the walking continues to be hard. I know burning soles of feet can mean diabetes but he had blood tests recently and nothing was found. He's slender, always had low cholesterol etc.
judylyne, my apologies, I was so busy talking about my own problems that I forgot to offer you my sympathy on the loss of your husband and to thank you for posting. Once again, I have found relevant information on this amazing board. Thank you also, Sunshyne & briegull.
Welcome Cassie and Judylynne! yes this is the ultimate site for knowledge about AD. lots of support and advice- step up and ask someone is usually around with a response.
imohr, no thankgoodness no parkensons here for the last 8yrs=just Vascular /AD dementia.. but the burning soles and hot painful legs yes we had that for a good while-i thought it had to do with AD meds he was taking which was aricept in the beginning. we discontinued aricept and he got to a point he didnt complain anymore. divvi
"Memory loss is not the prominent feature of FTD. People can still work, drive, run errands and 'pass' for normal. Frequently their doctors think they ARE normal, and either dismiss their problems, if there are not significant overwhelming ALS type muscle issues) -- or the doctors focus on the muscle issues, and the rest of it is disregarded.
"Of course, in some cases of ALS, none of the FTD problems are occurring. So much the better. But where they are happening, many doctors are fooled by the apparently normalcy of the patient. He or she pulls it together long enough to get through the appointment, then 'loses it' that night.
"When FTD is part of the picture, spouses explain that things are are not normal in a variety of important ways. These are only a few.
"They have completely inappropriate outbursts of anger (rage). ("You MADE me angry," the FRD person will say. "Why are you so irritating?") Their anger can come as a result of a small, insignificant cause, or for no cause at all.
"They lose insight about themselves. It's always the other person making them angry. And this makes it a Catch-22. The loss of insight makes it impossible for them to understand that they are in fact being unreasonable.
"They lose empathy. They lose the ability to understand anyone else's situation. They are hardly able to comprehend someone else's problems. Spouses report this as the "me, me, it's all about me" syndrome.
"They lose initiative. Apathy can become a big part of the picture. Watching TV all day, never getting out of the recliner. Yet finding the sudden energy to lash out at a spouse, at times. Contradictory, but it sometimes happens.
"Social appropriateness can go right down the tubes. They park the car where they damn well please ("screw 'em"); maybe they eat with their fingers; or eat every meal as if they had been starved for 3 days prior. Generally act like 11-year-olds. Later it may decline to acting like 2-year-olds.
"And it is common that eventually they become stupendous liars, fabricators and disruptors. Common claims are -- the spouse is having an affair; the kids stole all my money; there are strangers trying to - what, break into the house or garage.
"Caregivers who talk about their spouses are sometimes bewildered --"she's losing strength, her muscles are so weak" and the like.
"No one told them about the ALS connection. It's not necessarily all in the spinal cord. And FTD is not necessarily all in the frontotemporal area.
"However, when it is the less-specific "frontal lobe" as part of Alzheimer's, the symptoms and actions of the patient can seem very similar to FTD -- and will include the forgetfulness which is the hallmark of Alzheimer's."
See http://www.chumneurologie.org/conferences/FBI/FBI.pdf re all of the frontal-lobe dementias.
longyears, there is no anger or violence with my DH, quite the opposite.(Nor is there much normalcy). His memory issues vary from day to day but the other symptoms are of the Alzheimer's type rather than FTD but depression, apathy withdrawal, lack of insight and empathy were all present as are executive dysfunction and just a complete lack of reason and understanding. There is barely any speech as language problems began early but there was never any confabulation (?) or inappropriate behaviour so who can fathom it all. The Neuro will begin Rilutek for the ALS and Exelon for the dementia when we see him again on Tuesday. Are there questions that I should ask him? Are these medications safe?
Well, as everyone else has already said, "If you've seen one AD patient, you've seen one AD patient." There are so many variations.
This abstract says:
Dement Geriatr Cogn Disord 2006;21:74-80 Initial Symptoms in Frontotemporal Dementia and Semantic Dementia Compared with Alzheimer's Disease Shunichiro Shinagawaa, b, Manabu Ikedaa, Ryuji Fukuharaa, Hirotaka Tanabea
Background: Despite many reports about cognitive decline and behavioral changes in patients with frontotemporal lobar degeneration (FTLD), there have been very few systematic studies of initial symptoms of frontotemporal dementia (FTD) and semantic dementia (SD).
Objective: It was the aim of this study to investigate FTD and SD and to establish whether they are characterized by different initial symptoms.
Methods: Three groups of patients were studied: FTD (n = 36), SD (n = 17) and age-matched Alzheimer's disease (AD) patients (n = 52). Information on initial symptoms was obtained from caregivers.
Symptoms were classified into 22 distinct categories from the following domains, based on previous studies of symptoms of FTLD: (1) change in social behavior, affection, and daily activities, (2) cognitive decline, (3) language impairments, and (4) other abnormal symptoms.
Results: Change in social behavior, affection, and daily activities was significantly more common in patients with FTD; on the other hand, language impairments were significantly more common in patients with SD as initial symptoms.
Apathy and stereotypic behaviors were the most common initial symptoms among patients with FTD, while anomia, paraphasia, and impairment in word comprehension were the most common initial symptoms among patients with SD.
Memory disturbance was the most common initial symptom among patients with AD.
Conclusions: Behavioral and psychiatric symptoms are predominant initial symptoms in FTD, while language symptoms are predominant initial symptoms in SD. In addition to the assessment of current symptoms, the assessment of initial symptoms is useful for differential diagnosis in patients with FTD, SD and AD.
Thankyou longyears, I hadn't come across SD before. I am told (by Neuro) that my DH's illness is ALS and that the dementia is a part of that.They are not separate issues but one and the same(??)The onset of the dementia is the first symptom then the physical symptoms begin.What I have found online says ALS with FTD but it doesn't quite fit so I will follow your links and keep reading!
My husband was never angry once he developed dementia. He never had fear that he was dying and I'm so thankful for that. We were married for 42 years and I was blessed with wonderful memories.
Judylyne,so glad to hear that you have those happy memories, I can't even remember what our life used to be like, before all this began. I am afraid to ask but at what age did you lose your husband? I know that you said dementia symptoms began at 57. My husband is also unaware of what is really happening but I am terrified that I won't be able to cope with his physical care as he is not able to verbalize his thoughts so I am always second guessing.I so very much want to get it right but there is such fear in me.
My husband was 60. I also had fear. Does your husband have a feeding tube yet? My husband lost the swallowing 2 months before he died and had a feeding tube. I decided no vent even though I have taken care of vent patients for years. I f you decide not to go with a vent don't feel guilty. I kept him home even though he couldn't move a muscle.
judylyne, my dh is still relatively mobile (tires easily) and the swallowing issues have only just begun, a few choking episodes, excess saliva,now a cough when he lies down.His hands are very weak and deformed so he has to use both to do anything.The physical decline is happening much faster than the mental decline. Like your husband the dementia symptoms began at 57 and he turned 60 last month so the terror is really washing over me in waves now, after reading your last post. I am not ready to lose him yet.
Cassie, I would be concerned about prescribing Exelon for your husband. It is one of the cholinesterase inhibitors, and these do NOT help FTD, and can actually make the symptoms worse. I would suggest that the doctor consider prescribing Namenda instead. This is an NMDA receptor antagonist. There is anecdotal evidence that it can help FTD patients, and there are now clinical trials under way to confirm that this drug is broadly useful in treating FTD.
For more information on ALS dementia ...
The ALS Association has a lot of stuff on cognitive changes associated with ALS:
Thanks Sunshyne, from what I am reading it is definitely a frontal lobe dementia, associated with the ALS so your advice on Exelon is just what I needed. It is a 300 km round trip to the Neurologist so I need to go well prepared. How he will take my suggestion re: meds I don't know, but after following this board since the Alzheimer's diagnosis (misdiagnosis?) in March I am much more confidant in my dealings with the medical profession. From judylyne's post it seems that this illness will progress quickly so I need to be "in there and fighting" for my DH, so all advice is greatly appreciated.
cassie If your husband progresses rapidly like mine did you should contact hospice before things progress too far. They offer services that your going to need.