Well I am not sure where to start; however get a good primary doctor to support you and be your main support person. Sorry to say loves ones don’t help much with fighting for you in getting the medical needs, test (they always want to repeat mental test which were harder mentally to me then giving the doctors information, so after 3 years 10 studies I stop them). It can be awful at times but fine seminars that have people with dementia talk as you can get allot ideas how to fight off depression and tools how to cope with dementia. Family will take along time to figure out what dementia does to you and want to help, the problem is they want to tell you how you feel (it changes day to day and big changes once in awhile). Writing, remembering name, how to get home, dressing completely, taking pills, and eating right is normally easy; however with dementia are all some daily challenges. This comment is very hard to write as my dementia has progressed where I heavily really on software and hardware devices to live a life where I find things to do and able to continue to give back to my community and family; this give me purpose to keep enjoying life. Also find a awesome counselor who can help you realize that fighting for yourself is ok!
I hope this help as I having been living with dementia for the last 7 years and still find really good days to enjoy. I know the grammar is off but I can live with the people who laugh at me.
I applaud you for your courage and determination in your journey. I too dislike those mental tests...I accompany my mom for her appointments and I have a hard time with the subtraction testing!
That is surprising. Have you checked with practices that deal with memory/ mood? I have found that a good osteopath is a great doc to work with from a full systems view. They will sometimes be more open to ordering tests.
The neurocognitive (neuropsych) tests are non invasive.
You don’t have to share this if you dont want to - what did the docs say when you brought this testing up?
Hello Sarah - I was diagnosed with LBD a few years back. Before the diagnosis I was noticing things were different but didn’t think too much of it. I was diagnosed with Parkinson’s several years earlier - so much of what I was feeling was attributed to the PD.
So what to expect - expect the unexpected.
I will preface that everyone s different. If you talk to 10 people with LBD - you will probably get many different symptoms / combination of symptoms.
I was able to help make decisions for myself - with input from my family - before I might not be able to.
I made the conscious decision to stop driving in 2019. This was prompted by getting lost and inattention.
We took steps to make sure I had the paperwork to designate a health care surrogate. Power of attorney.
I have found that working to make some decisions - or at least thinking about it to be helpful. I think being able to make decisions - like giving up the keys makes things much easier instead of waiting until my family would take them.
What to expect? Everyone is different - for me I have become very structured - I have to have an anticipated schedule. If it deviates a lot - i dont do well.
Social situations are becoming difficult. I am having problems understanding facial expressions - which is challenging during a conversion.
Communication changes. I have found that I lose my train of thought -even in the middle of a conversation. I want to say something but by the time I can jump in - the thought is gone. So to compensate - I jump in and talk over people to get my thought out.
I am slow to get things out. I think and have to process the words to say and sometimes by the time it comes out - it isn’t what it started out as.
Mobility - I can’t say for sure how much the LBD has effected this as I am also a PD and MD patient as well. (I got hit by a jackpot).
Falls - I have taken a few falls - nothing major Worst was a slight knee injury.
Hallucinations - for me not too bad. I am able to realize they are not real - but it sure can get my attention when I am i the middle of it.
Depression - yes
Multitasking - none existant - I have to have directions read a couple steps at a time. Looking at something like directions to put something together - well my 5 year old grandson does better.
Comprehension of new material is very difficult.
I might suggest a program that Mayo has and probably others as well have similiar programs. The Mayo program is called HABIT. It is geared toward people with dementia and their caregivers.
They address a lot of the things to be thinking about for planning purposes.
They also help with coping strategies for different situations. They go over all of these with you so you are getting advice geared toward you.
They can give a lot of insight into what to expect.
I hope this isn’t too hard to follow. I also have a hard time with putting thoughts together in a coherent way at times.
Closing thoughts - find ways to keep a sense of humor. We have found that helps a lot.
I forgot to add - as things change - focus on the things that you CAN do and try not to dwell on the things you cant or wont do anymore. Believe me - it is HARD to do. It is something I have to remind myself of everyday. Staying as positive as possible is very important and overall good for you. This along with a good exercise routine, good diet, regular times of rest and a good stretching routine also helps a lot. All things we should do regardless of our afflictions.
Starting off on these things NOW before they become more difficult is something I would highly recommend. Then when things are changing - you wil already have these things in your routing. You wont have to learn them later when learning might be a challenge. For most challenges there is a way around them.
Her is an example of thinking of what I can do instead of what I cant do. I was doing some home PT for a couple of months. We thought yoga would be something good to try.
Immediately I thought of the many reasons I couldn’t do that. For every reason I gave - he gave me two ways to work around it. From that I learned this lesson - focus on the abilities!!!
It might sound weird - I now do chair yoga and find it very therapeutic.
That is surprising. Have you checked with practices that deal with memory/ mood? I have found that a good osteopath is a great doc to work with from a full systems view. They will sometimes be more open to ordering tests.
The neurocognitive (neuropsych) tests are non invasive.
You don’t have to share this if you dont want to - what did the docs say when you brought this testing up?
Good advice. I had all the testing done years ago, but not recently, except for the one where you have to remember 3 things, which I failed massively. [I didn't quiite say "woman, man, television", but close! :} ] I think if I am referred to a clinic here (Seattle), I will no doubt have to go through them all again. Yes, they're a pain, but it will be interesting to find out what's changed. Unfortunately, though, clinics from the 1990s don't usually keep their old records that long. Anyway, I'm hoping for the best!
Hello Sarah - I was diagnosed with LBD a few years back. Before the diagnosis I was noticing things were different but didn’t think too much of it. I was diagnosed with Parkinson’s several years earlier - so much of what I was feeling was attributed to the PD.
So what to expect - expect the unexpected.
I will preface that everyone s different. If you talk to 10 people with LBD - you will probably get many different symptoms / combination of symptoms.
I was able to help make decisions for myself - with input from my family - before I might not be able to.
I made the conscious decision to stop driving in 2019. This was prompted by getting lost and inattention.
We took steps to make sure I had the paperwork to designate a health care surrogate. Power of attorney.
I have found that working to make some decisions - or at least thinking about it to be helpful. I think being able to make decisions - like giving up the keys makes things much easier instead of waiting until my family would take them.
What to expect? Everyone is different - for me I have become very structured - I have to have an anticipated schedule. If it deviates a lot - i dont do well.
Social situations are becoming difficult. I am having problems understanding facial expressions - which is challenging during a conversion.
Communication changes. I have found that I lose my train of thought -even in the middle of a conversation. I want to say something but by the time I can jump in - the thought is gone. So to compensate - I jump in and talk over people to get my thought out.
I am slow to get things out. I think and have to process the words to say and sometimes by the time it comes out - it isn’t what it started out as.
Mobility - I can’t say for sure how much the LBD has effected this as I am also a PD and MD patient as well. (I got hit by a jackpot).
Falls - I have taken a few falls - nothing major Worst was a slight knee injury.
Hallucinations - for me not too bad. I am able to realize they are not real - but it sure can get my attention when I am i the middle of it.
Depression - yes
Multitasking - none existant - I have to have directions read a couple steps at a time. Looking at something like directions to put something together - well my 5 year old grandson does better.
Comprehension of new material is very difficult.
I might suggest a program that Mayo has and probably others as well have similiar programs. The Mayo program is called HABIT. It is geared toward people with dementia and their caregivers.
They address a lot of the things to be thinking about for planning purposes.
They also help with coping strategies for different situations. They go over all of these with you so you are getting advice geared toward you.
They can give a lot of insight into what to expect.
I hope this isn’t too hard to follow. I also have a hard time with putting thoughts together in a coherent way at times.
Closing thoughts - find ways to keep a sense of humor. We have found that helps a lot.
Larry -- Thank you so much for being so open and kind, and for sharing your situation with all of us.
I'm caring for my 78 yo wife -- in her second year of mild cognitive impairment -- and she's experiencing increasing deficits these past two months. Information from others going through or dealing with the many everyday life issues related to dementia is so helpful... and appreciated.
Wishing you and others reading this and contributing all the best!
Larry -- Thank you so much for being so open and kind, and for sharing your situation with all of us.
I'm caring for my 78 yo wife -- in her second year of mild cognitive impairment -- and she's experiencing increasing deficits these past two months. Information from others going through or dealing with the many everyday life issues related to dementia is so helpful... and appreciated.
Wishing you and others reading this and contributing all the best!
To LarryH -- Forgot to mention and note how excellently and thoughtfully you expressed / communicated all your points... very impressed! Thank you again.
Larry -- Thank you so much for being so open and kind, and for sharing your situation with all of us.
I'm caring for my 78 yo wife -- in her second year of mild cognitive impairment -- and she's experiencing increasing deficits these past two months. Information from others going through or dealing with the many everyday life issues related to dementia is so helpful... and appreciated.
Wishing you and others reading this and contributing all the best!
Anytime Larry - drop me a private message anytime. God bless you for walking this journey with your wife. Always know - whatever we say or do - even if we cant say it - we appreciate everything that you do for us. Know she loves you.
Peace
Larry
Thanks for your helpful reply. I'm still trying. I waited for a week to get a call from the Phoenix clinic and when they got back to me, they told me that Neurology wasn't taking new Medicare patients. I have been between one primary care doctor, who left, and a new one that I just started to see last week. She may refer me to the local neurology dept. I've also got a call into the Rochester clinic, but now expect that a week from now they will also tell me they aren't taking new patients. What depresses me is how the Mayo clinic advertises on their website how important it is to get diagnosed early, and then won't give you an appointment! Oh, well, I'll work from here for now. (Seriously. I did check the Thailand website, but the CDC is warning us not to go there!) I've been using post-its and computer, etc., for years to help me remember stuff. My last PET scan was in the mid-90s and showed some hypoperfusion in the amygdala/hippocampus region, but that was caused by a chemical poisoning. Now, it's getting worse. Of course, I could just stay here and deteriorate, but I don't want my cats to suffer!
I was concerned last year; my pcp ordered an MRI; I visited a neurologist and he referred me to a neuro psychologist (Shannon Biggin in Tucson) who I spent a morning with going through various tests - spacial, hands-on, verbal, etc. So I know pretty much where my deficiencies are - if I wanted further intervention with therapy, that would be a referral. But, mine turned out to be Age 68 stuff, learning disability that I knew about. My husband is also older, so we have been busy over the past few years simplifying finances with a planner, making our home safer (ADA walk in shower, no steps, removed rugs and have been purging for the next phase. No one can tell the future, but you can work toward an easier environment. We haven't looked into plans for later needs, but have ideas. I have two cats also in the family and hope to keep up with them!
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I applaud you for your courage and determination in your journey. I too dislike those mental tests...I accompany my mom for her appointments and I have a hard time with the subtraction testing!
That is surprising. Have you checked with practices that deal with memory/ mood? I have found that a good osteopath is a great doc to work with from a full systems view. They will sometimes be more open to ordering tests.
The neurocognitive (neuropsych) tests are non invasive.
You don’t have to share this if you dont want to - what did the docs say when you brought this testing up?
Hello Sarah - I was diagnosed with LBD a few years back. Before the diagnosis I was noticing things were different but didn’t think too much of it. I was diagnosed with Parkinson’s several years earlier - so much of what I was feeling was attributed to the PD.
So what to expect - expect the unexpected.
I will preface that everyone s different. If you talk to 10 people with LBD - you will probably get many different symptoms / combination of symptoms.
I was able to help make decisions for myself - with input from my family - before I might not be able to.
I made the conscious decision to stop driving in 2019. This was prompted by getting lost and inattention.
We took steps to make sure I had the paperwork to designate a health care surrogate. Power of attorney.
I have found that working to make some decisions - or at least thinking about it to be helpful. I think being able to make decisions - like giving up the keys makes things much easier instead of waiting until my family would take them.
What to expect? Everyone is different - for me I have become very structured - I have to have an anticipated schedule. If it deviates a lot - i dont do well.
Social situations are becoming difficult. I am having problems understanding facial expressions - which is challenging during a conversion.
Communication changes. I have found that I lose my train of thought -even in the middle of a conversation. I want to say something but by the time I can jump in - the thought is gone. So to compensate - I jump in and talk over people to get my thought out.
I am slow to get things out. I think and have to process the words to say and sometimes by the time it comes out - it isn’t what it started out as.
Mobility - I can’t say for sure how much the LBD has effected this as I am also a PD and MD patient as well. (I got hit by a jackpot).
Falls - I have taken a few falls - nothing major Worst was a slight knee injury.
Hallucinations - for me not too bad. I am able to realize they are not real - but it sure can get my attention when I am i the middle of it.
Depression - yes
Multitasking - none existant - I have to have directions read a couple steps at a time. Looking at something like directions to put something together - well my 5 year old grandson does better.
Comprehension of new material is very difficult.
I might suggest a program that Mayo has and probably others as well have similiar programs. The Mayo program is called HABIT. It is geared toward people with dementia and their caregivers.
They address a lot of the things to be thinking about for planning purposes.
They also help with coping strategies for different situations. They go over all of these with you so you are getting advice geared toward you.
They can give a lot of insight into what to expect.
I hope this isn’t too hard to follow. I also have a hard time with putting thoughts together in a coherent way at times.
Closing thoughts - find ways to keep a sense of humor. We have found that helps a lot.
Here is a link to the Habit program - https://www.mayoclinic.org/departments-centers/psychiatry/services/habit-program
Peace
Larry
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1 ReactionI forgot to add - as things change - focus on the things that you CAN do and try not to dwell on the things you cant or wont do anymore. Believe me - it is HARD to do. It is something I have to remind myself of everyday. Staying as positive as possible is very important and overall good for you. This along with a good exercise routine, good diet, regular times of rest and a good stretching routine also helps a lot. All things we should do regardless of our afflictions.
Starting off on these things NOW before they become more difficult is something I would highly recommend. Then when things are changing - you wil already have these things in your routing. You wont have to learn them later when learning might be a challenge. For most challenges there is a way around them.
Her is an example of thinking of what I can do instead of what I cant do. I was doing some home PT for a couple of months. We thought yoga would be something good to try.
Immediately I thought of the many reasons I couldn’t do that. For every reason I gave - he gave me two ways to work around it. From that I learned this lesson - focus on the abilities!!!
It might sound weird - I now do chair yoga and find it very therapeutic.
Peace
Larry
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Helpful -
Hug
2 ReactionsGood advice. I had all the testing done years ago, but not recently, except for the one where you have to remember 3 things, which I failed massively. [I didn't quiite say "woman, man, television", but close! :} ] I think if I am referred to a clinic here (Seattle), I will no doubt have to go through them all again. Yes, they're a pain, but it will be interesting to find out what's changed. Unfortunately, though, clinics from the 1990s don't usually keep their old records that long. Anyway, I'm hoping for the best!
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1 ReactionYou’ll get there. Keep us up to date!!!
Peace
Larry
Larry -- Thank you so much for being so open and kind, and for sharing your situation with all of us.
I'm caring for my 78 yo wife -- in her second year of mild cognitive impairment -- and she's experiencing increasing deficits these past two months. Information from others going through or dealing with the many everyday life issues related to dementia is so helpful... and appreciated.
Wishing you and others reading this and contributing all the best!
/LarryG
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Like -
Helpful -
Hug
2 ReactionsTo LarryH -- Forgot to mention and note how excellently and thoughtfully you expressed / communicated all your points... very impressed! Thank you again.
/LarryG
Anytime Larry - drop me a private message anytime. God bless you for walking this journey with your wife. Always know - whatever we say or do - even if we cant say it - we appreciate everything that you do for us. Know she loves you.
Peace
Larry
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Helpful -
Hug
1 ReactionI was concerned last year; my pcp ordered an MRI; I visited a neurologist and he referred me to a neuro psychologist (Shannon Biggin in Tucson) who I spent a morning with going through various tests - spacial, hands-on, verbal, etc. So I know pretty much where my deficiencies are - if I wanted further intervention with therapy, that would be a referral. But, mine turned out to be Age 68 stuff, learning disability that I knew about. My husband is also older, so we have been busy over the past few years simplifying finances with a planner, making our home safer (ADA walk in shower, no steps, removed rugs and have been purging for the next phase. No one can tell the future, but you can work toward an easier environment. We haven't looked into plans for later needs, but have ideas. I have two cats also in the family and hope to keep up with them!
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Like -
Helpful -
Hug
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