My husband - Shikar, almost 77, APOE 3/4 - has been diagnosed with early stage Parkinson's Disease. He's had short-term memory loss for about two years; we realize now that it's one of his Parkinson's symptoms. We can handle the memory loss fine - what he doesn't remember isn't that important, and I can fill in the blanks for him when he needs them filled in. He's still Shikar, quieter now, but with the same outstanding judgment and reason.
My concern is his APOE 3/4 status and how that might play into eventual Lewy Body Dementia. I've left messages at Parkinson's websites, but haven't found that much familiarity with APOE. I've read that it can be implicated in Lewy Body Dementia as well as Alzheimer's. Do any of you have experience with this? Lillybritches?
APOE4 and Parkinson's
Re: APOE4 and Parkinson's
Hugs Thirties Child. Good to hear from you, although sorry to hear about the PD diagnosis. So many challenges you two have faced!
I don't know much about Lewey Body Dementia. Hope someone else does, and if not, WE.WILL.HELP.YOU.FIND.OUT!
Have you seen the trial request? You might consider it since you'd have access to top dementia researchers.
https://www.apoe4.info/forums/viewtopic.php?f=15&t=797
I don't know much about Lewey Body Dementia. Hope someone else does, and if not, WE.WILL.HELP.YOU.FIND.OUT!
Have you seen the trial request? You might consider it since you'd have access to top dementia researchers.
https://www.apoe4.info/forums/viewtopic.php?f=15&t=797
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Thirties Child
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Re: APOE4 and Parkinson's
I got the information but figured he wouldn't fit since he's most likely headed for Lewy Body Dementia instead of Alzheimer's. Thanks for pointing me in that direction - I'll definitely follow through. One of my lessons - one I obviously haven't learned - is to stop jumping to unfounded conclusions.
Btw, we see a psychiatrist in November for medication analysis, and I'm going to ask about bipolar ii. Our LCSW daughter thinks not, but I see it very clearly. Not now. But then. This depression was clearly part of the Parkinson's - I say was because he's now feeling, in his words, content. The Levodopa helped.
Thanks again.
Btw, we see a psychiatrist in November for medication analysis, and I'm going to ask about bipolar ii. Our LCSW daughter thinks not, but I see it very clearly. Not now. But then. This depression was clearly part of the Parkinson's - I say was because he's now feeling, in his words, content. The Levodopa helped.
Thanks again.
Re: APOE4 and Parkinson's
Donna, I'm sure that Lilly will chime in with great info. In the meantime, It's good to have an update, but wish you had better news. We've all been worried about you two. I'm not sure if Shikar will qualify for the study or not. You absolutely did the right thing by signing him up though. If he's excluded down the road, at least you tried.
The men on my Father's side of the family, tend to carry an E4 allele and, (if they live long enough,) all develop AD or PD- going back several generations. My son, 3/4, developed an essential tremor at age 12. I follow the research/treatment for Parkinson's fairly closely and I've noted that the SAME diet/supplements that benefit AD seem to benefit PD. This trial (if Shikar is included) MAY end up being very helpful.
The men on my Father's side of the family, tend to carry an E4 allele and, (if they live long enough,) all develop AD or PD- going back several generations. My son, 3/4, developed an essential tremor at age 12. I follow the research/treatment for Parkinson's fairly closely and I've noted that the SAME diet/supplements that benefit AD seem to benefit PD. This trial (if Shikar is included) MAY end up being very helpful.
Re: APOE4 and Parkinson's
Donna,
You might be interesting in Terry Wahls' work, if you aren't familiar. Her TED talk is here: http://www.youtube.com/watch?v=KLjgBLwH3Wc Her FB page: https://www.facebook.com/TerryWahls website: http://terrywahls.com/ and book http://www.amazon.com/The-Wahls-Protoco ... 1583335218 You can also search for podcasts & interviews. As you will see in the TED talk, she went from being very bad with her MS to being very functional. She was a traditional MD. When she saw meds would only delay her decline, not reverse it, she went into the literature to create her program. She believes many of these neurological illnesses such as MS, PD & etc are very similar at the cellular level, only presenting differently. She has people on her program with PD who have been helped.
You might be interesting in Terry Wahls' work, if you aren't familiar. Her TED talk is here: http://www.youtube.com/watch?v=KLjgBLwH3Wc Her FB page: https://www.facebook.com/TerryWahls website: http://terrywahls.com/ and book http://www.amazon.com/The-Wahls-Protoco ... 1583335218 You can also search for podcasts & interviews. As you will see in the TED talk, she went from being very bad with her MS to being very functional. She was a traditional MD. When she saw meds would only delay her decline, not reverse it, she went into the literature to create her program. She believes many of these neurological illnesses such as MS, PD & etc are very similar at the cellular level, only presenting differently. She has people on her program with PD who have been helped.
Tincup
E3,E4
E3,E4
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LillyBritches
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Re: APOE4 and Parkinson's
Dear Thirties - and I'm sorry, I'm penning this quickly because I'm on the way to slumberland - my mom received a diagnosis of Lewy Body Disease circa four years ago (age 90). On a very broad level, Lewy is almost like 1/2 AD and 1/2 Parkinson's. At the time mom was diagnosed, we were told that she had to meet two out three criteria:
- hallucinations
- Parkinson's-like motor impairment
- memory/cognitive impairment
She wasn't having hallucinations, and, 'til this day, really doesn't have them unless she has lost a lot of sleep. Here's another qualification for a LBD diagnosis, and the protocol that neurologists use to distinguish Lewy Body from Parkinson's: if the cognitive issues precede the motor issues, it's labeled Lewy Body. If the motor issues precede the cognitive issues, it's most likely Parkinson's and Parkinson's-related dementia. However, please keep in mind that Parkinson's-related dementia most often occurs in the later stage(s) of Parkinson's. In Parkinson's, movement issues would have been apparent for awhile.
This only muddied my poor mom's waters further, though (as oft happens): she developed Parkinson's-like freezing and a worsening finger tremor about a year after she started having memory issues; but, when I really thought about it, she had developed that tremor and balance issues about two years before her memory issues. Also, her sense of smell had petered out on her when she hit age 84 or so...and we all know that loss of sense of smell can mean impending Parkinson's, AD, and/or a host of other neurological disorders.
So, my mom's diagnosis is far from firm on any of the above.
If you've noticed that shikkar's memory/executive functioning problems definitely occurred before any movement problems, and if he's having non-frightening (usually, for LBD patients, they aren't) hallucinations, then, yes. It's probably Lewy Body.
Oh, and from what I've read, e4 is most definitely linked to brain/neurological diseases other than AD. Weaker links, I believe, but current research is exploring that further.
Thirties, PM me at any time if you want to know more. Hope that helps!
- hallucinations
- Parkinson's-like motor impairment
- memory/cognitive impairment
She wasn't having hallucinations, and, 'til this day, really doesn't have them unless she has lost a lot of sleep. Here's another qualification for a LBD diagnosis, and the protocol that neurologists use to distinguish Lewy Body from Parkinson's: if the cognitive issues precede the motor issues, it's labeled Lewy Body. If the motor issues precede the cognitive issues, it's most likely Parkinson's and Parkinson's-related dementia. However, please keep in mind that Parkinson's-related dementia most often occurs in the later stage(s) of Parkinson's. In Parkinson's, movement issues would have been apparent for awhile.
This only muddied my poor mom's waters further, though (as oft happens): she developed Parkinson's-like freezing and a worsening finger tremor about a year after she started having memory issues; but, when I really thought about it, she had developed that tremor and balance issues about two years before her memory issues. Also, her sense of smell had petered out on her when she hit age 84 or so...and we all know that loss of sense of smell can mean impending Parkinson's, AD, and/or a host of other neurological disorders.
So, my mom's diagnosis is far from firm on any of the above.
If you've noticed that shikkar's memory/executive functioning problems definitely occurred before any movement problems, and if he's having non-frightening (usually, for LBD patients, they aren't) hallucinations, then, yes. It's probably Lewy Body.
Oh, and from what I've read, e4 is most definitely linked to brain/neurological diseases other than AD. Weaker links, I believe, but current research is exploring that further.
Thirties, PM me at any time if you want to know more. Hope that helps!
I'm just a oily slick in a windup world with a nervous tick.
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Thirties Child
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Re: APOE4 and Parkinson's
Mercury is retrograde, which means messages can disappear into cyberspace, which means I'll once again try to write a message and this time submit it before one of Shikar's cats walks across the keyboard and sends it who-knows-where.
Lilly, thank you so much for your mother's story, and for the criteria for Lewy Body Dementia. It fits - no hallucinations but physical impairment and memory loss. Shikar hasn't lost his sense of smell and his tremors seem to fit Essential Tremor instead of Parkinson's. However, everything else points to PD - the slow, shuffling walk; the soft voice; the miniscule handwriting; the facial mask; the stiff muscles. It seems to have happened so quickly, and is getting worse almost daily. I'm stunned at how much he has deteriorated in just the last six weeks. Two days ago he had to go down on his hands and knees to keep from falling, and this morning he fell out of bed while trying to hang up the telephone. I'd like to get a second opinion at Emory in case there is more going on. He resists but if it gets much worse, I will insist.
His first symptom was five or six years ago, REM Behavior Disorder. Instead of recognizing it as a precursor, I joked about it, asking my friends to testify in his murder trial that he really didn't mean to killl me, that I got in the way when he was kicking and hitting while he acted out a dream. His short-term memory loss came before any symptoms of PD - about 20 months ago he couldn't remember what the doctor told him after I had arthroscopy on my knee, and a month later he asked me twice in one day where he was born. He doesn't even remember the really deep depression he was in for the last two years. I've posted before that he's losing numbers, memory and linear thinking, which were never his strengths, but maintaining judgment and reason, which were. I've always had trouble with nouns, and he can still give me the word I'm struggling to find. He can read a chapter of the novel I'm writing and make an excellent critique of the writing, but can't remember who all the characters are.
When my sister was diagnosed with Parkinson's in July, I reassured her, probably correctly, that her APOE 2/3 will prevent dementia. And here I am, two and a half months later, dealing with PD and 3/4.
Finally, I'm going to indulge in a bit of philosophy. I believe we are here for a purpose, to learn and also to give. Shikar needs to learn that he doesn't always have to do it himself, that it's okay to let other people help, hence PD that will likely render him dependent at some point. I also wonder if those APOE4s put you all on a path to lead the way, to show what can be done, to help all those 4s who come with you and those who come after you. And on top of that, most of you are young enough that you have time to beat this. Win/Win?
Donna
Lilly, thank you so much for your mother's story, and for the criteria for Lewy Body Dementia. It fits - no hallucinations but physical impairment and memory loss. Shikar hasn't lost his sense of smell and his tremors seem to fit Essential Tremor instead of Parkinson's. However, everything else points to PD - the slow, shuffling walk; the soft voice; the miniscule handwriting; the facial mask; the stiff muscles. It seems to have happened so quickly, and is getting worse almost daily. I'm stunned at how much he has deteriorated in just the last six weeks. Two days ago he had to go down on his hands and knees to keep from falling, and this morning he fell out of bed while trying to hang up the telephone. I'd like to get a second opinion at Emory in case there is more going on. He resists but if it gets much worse, I will insist.
His first symptom was five or six years ago, REM Behavior Disorder. Instead of recognizing it as a precursor, I joked about it, asking my friends to testify in his murder trial that he really didn't mean to killl me, that I got in the way when he was kicking and hitting while he acted out a dream. His short-term memory loss came before any symptoms of PD - about 20 months ago he couldn't remember what the doctor told him after I had arthroscopy on my knee, and a month later he asked me twice in one day where he was born. He doesn't even remember the really deep depression he was in for the last two years. I've posted before that he's losing numbers, memory and linear thinking, which were never his strengths, but maintaining judgment and reason, which were. I've always had trouble with nouns, and he can still give me the word I'm struggling to find. He can read a chapter of the novel I'm writing and make an excellent critique of the writing, but can't remember who all the characters are.
When my sister was diagnosed with Parkinson's in July, I reassured her, probably correctly, that her APOE 2/3 will prevent dementia. And here I am, two and a half months later, dealing with PD and 3/4.
Finally, I'm going to indulge in a bit of philosophy. I believe we are here for a purpose, to learn and also to give. Shikar needs to learn that he doesn't always have to do it himself, that it's okay to let other people help, hence PD that will likely render him dependent at some point. I also wonder if those APOE4s put you all on a path to lead the way, to show what can be done, to help all those 4s who come with you and those who come after you. And on top of that, most of you are young enough that you have time to beat this. Win/Win?
Donna
Re: APOE4 and Parkinson's
You make me cry, Donna. Your story and strength are inspiring. I pray we're making a difference and helping someone; maybe even those who come after us. I see LIGHT where I didn't at first. I'm feeling really hopeful- even for Shikar. Keep the faith.
Re: APOE4 and Parkinson's
Thirties child, I have a friend whose husband has PD in late 40s. He was advancing quickly - motor and memory - and the doc not following through on things. They got a new doc more specialized in PD (and the first was a top doc) who said the original doc wasn't giving him enough meds. After an increase he improved. Please look into it.
ApoE 3/4 > Thanks in advance for any responses made to my posts.
Re: APOE4 and Parkinson's
Donna, I was thinking of how u all were doing in the midst of my family trials. An 18 yr olds gall bladder seems miniscule of a problem compared to u and Shikar. But you have each other, I hope my hubbs is caring as u r with Shikar, but ai fear it will not be the case. Donna dont wait to get a second r third opinion. Just go, cause you never know what lies around the corner. I laughed at the cat story because last night I wasnt feeling good went to bed early and my cat jumped on me and licked my hand and was a comfort.
