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A few weeks ago I mentioned confusion resulted in my going to the a Medical Center. They ran tests. An MRI shows "hippocampus size 7% compared to age matched normal" along with other irregularities. A team of doctors says I probably have Alzheimer's.


They are going to run some tests for Lewy's Bodies the next most probable.


After a final result I will be forbidden from driving, My license will be revoked. This will be a considerable problem I am still working and have sons in college, customers to see and so on.


Suggestions about getting around without driving?


Does anyone on the forum have knowledge of Lewy's Bodies?


Thanks.

Here in Riverside, the city has a special bus for the disabled. You sign up for the service. Here it is $2 there and $2 to return. They pick you up at your DOOR and take you where you want to go, and same with coming home. If you work every day, you may have to make multiple reservations for the bus pick up and bring back. It is cheaper than owning a car. When telling them the time to pick me up, I always allow at least an extra half hour because they might have to pick up other people as well. So, I figure to get where I am going early. They want you to be ready 15 minutes before pick up time. And, they have a range of when they come of a half hour, meaning if you say pick me up at 8:30 they can come from 8:15 to 8:45. So, figure that in when you ask for a time for a pick up. REGARDING what to do if you KNOW you may be getting Alzheimers or some form of it is to start a daily journal. In the front of the journal, write down all your info you do not want to forget. Name, address, phone #, SS#, medical health #, important phone numbers, names of people and a picture of them with what relation they are to you, your birthday with year and important people's birthdays, etc. Then, a section on which meds you take and why, and how to take them (how often, etc). Then, a daily section where you write down important things each day. A doctor might ask, "How many days have you been feeling this or that?" and with that section of the journal, you can look back and tell them. Also, have a calendar on which you can write down all appointments and things to do. LASTLY, prepare your family for what might be coming, and figure out as a family how they can help you as you deteriorate in your mental abilities. MOSTLY, have faith that you WILL be able to cope with change, and that you are ALWAYS going to be important in this world, no matter how many changes may come as you go through this aging process. Good luck. All my love! Kar.
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Reply to karenchaya
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"a diagnosis does not a solution make."

read up on the side effects of the medications prescribed for Alzheimers . The side effects are the same as the symptoms they are designed to treat.
In fact cause more of the problems already being suffered...plus more
I can assure you that each human does not have the same physical structure..including the brain. There have been many cases of autopsies where people who had lived full & productive lives were found to have brains that were missing large sections ...yet had no problems
Clearly you have been having health concerns or you would not have gone for consultation.
You will not find the answer to illness in medications or surgeries...

The body is a self healing miracle...and will recover given the opportunity
You might consider reading (& rereading) the book
"Tissue cleansing through bowel management" by Dr Bernard Jensen.
Jensen wrote the book after 60 years of clinical practice treating mostly the chronically ill.
In the meantime consider drinking a combination of Rosemary & sage tea...3 cups a day. Rosemary has an affinity for the brain & greatly improves concentration, acuity & comprehension.
Rosemary grows over most of America...& now it is in flower
I suggest when you are ready you go to a bush each morning...pick the flowering top...chop or grind in a coffee grinder & add to your breakfast..a small handful ..
Do this 6 days a week...rest Sundays...repeat
This knowledge comes from Nichols Culpepper book The Complete Herbal
Culpepper was the first to take the physicians herbal information the physicians had insisted on keeping in Latin (to prevent the average person from understanding how to heal themselves) and translated it into English. The book is even more popular than it was 600 years ago
I have seen the rosemary used fresh as described bring wonderful results in those suffering mental decline..
Lastly, you might consider slowing down...just a little...the body is not a machine..as time passes the body needs more care, and more rest.
Take good care of yourself. It sounds that many people need you here
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Reply to princessasa
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The shrinkage of your hippocampus is not a good sign. However, for any dementia diagnosis, you should have neuropsychological testing, not just an MRI! It should probably last 4+ hours; usually administered by or supervised by a neuropsychologist or psychiatrist. Be sure to insist that this testing be done. If you have Medicare, Medicare will pay for the testing.

As others have suggested, you may be able to look at driving as a separate issue. If you live in a mid-sized city or above, there may be a center that does driving testing and also driving rehab for people with disabilities. Depending on which state you live in, that evaluation may be more important than your current diagnosis in determining whether you can currently drive. Some posters here have had to go to incredible lengths to get a spouse's license revoked. It sounds as if you will accept an unsatisfactory report on your actual driving (especially if you've had recent accidents). However, if a driving evaluation is OK, and you haven't been having accidents or getting lost while driving, even if the dementia diagnosis is confirmed, you may be able to drive legally and safely for the moment. That would give you time to plan for eventually giving up driving.

I commend you for taking the initiative for getting medical attention when you perceived that there was a problem with confusion. Obviously, what you've learned so far has not been reassuring, but in the whole course of your life, it's good to be prepared for the future. If you do have dementia, you will have a say about your future. You can also investigate some of the potential things that MAY slow the course of dementia, such as physical exercise--currently thought to be more important than brain exercise, but the situation is fluid, and may partly depend on which form, of dementia you have--if you indeed have it--as others have discussed. Please keep in touch, and we'll try to help you as much as possible. Again. congrats on taking the initiative!
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Reply to caroli1
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Cricket6901: If I were you, I would garner as much information about dementia, specifically Alzheimer's and LBD as possible. The forum has much information on LBD. Margaret suggest how YOU can locate it here. Thank you, Margaret. Regarding driving, there are now many ways to get around, e.g. ride share/Uber, et al.
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Reply to Llamalover47
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Often support organizations for patients or families have members who will tell you which doctors they have found in your area who is knowledgable and helpful for a condition. People mention one for Lewy Body Dementia.
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Reply to Moxies
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Hello.

definitely get a second opinion and look for a doc who will talk to you.

my personal wish is a neurologist who will say “i know youre not going to get better. In fact youre going to get worse. But lets see what we can do in the meantime.“

best wishes to you.

im still looking.
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Reply to Betsysue2002
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I would get a second opinion.
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Reply to DDD5775
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Re: Driving
If You are going to continue working, you will have no other choice than to hire someone to use your car to drive you around.

On the days you have no appointments, you can either Car Share with someone at work or take an Uber to and from work.

I would think it would be less expensive if you found and hired someone for minimum wage and try to schedule your appointments for a couple days a week.

You might also check to see if there is some kind of bus service available for the disable.
Prayers

Prayers
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Reply to bevthegreat
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The presence of Lewy Bodies helps diagnose Parkinson's disease. It also helps the doctors to decide on which treatment would be beneficial. There are different medications you can take for Parkinson's disease and Alzheimer's disease that will effectively "sharpen" your memory for many years. Unfortunately, these medications will not be effective in latter stages of either disease.

It might be a good time to consider where you live and how you get around. Most of us have problems as we age that limit our ability to drive. Consider public transportation, Uber, or Lyft. Some of the younger generation do not own cars since these options seem to work very well. Also consider how you can "see" more of your customers using technology: FaceTime or other video options by phone, Zoom and other online video conference options... You might also be able to have your customers come to you, depending on your type of business. My brother-in-law and son-in-law do the majority of their sales calls online in their respective businesses.

Alternatively, you might consider another role or position in the company you work for. You should be able to find a non-driving position or even a work from home position.
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Reply to Taarna
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So sorry … many of us unfortunately know a lot about dementia…
Alzheimer’s and Lewy Body very different . There’s a definitive spinal test for Alzheimer’s… LBD is usually diagnosed from its symptoms… which include spatial (that would affect driving) balance slow movement… slight tremors … later more Parkinson’s develop… there’s
hallucinations delusions confusion and also lots of clarity and lucidity
lots of ups and downs often within same day !! Whereas Alzheimer’s is a slow much more gentle decline LBD is
more aggressive step downs . Memory usually much better with LBD but Parkinson’s big part as it progresses.
I would put everything in place and let your loved ones know your wishes down the road.
lots of info online .. utube… LBD org
best of luck .. keep intouch here !!!
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Reply to Helenn
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With regards to driving, unless you are already having difficulty with it, wait for an assessment. Also, if you live in a city/suburb most of them have public transportation options. Even rural areas have transportation options(must call days in advance) through their county services for seniors. But again, wait for an official diagnosis and assessment.
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BurntCaregiver Sep 27, 2021
Exactly. Wait for an official diagnosis and assessment. You never know it could be something else too. Just wait is right.
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Cricket6901
Sorry to here I have been taking care of my wife whom has LBD of four yrs all i can say seek and read on LBD good book is thirty six hour day sure helped me with my wife.
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Reply to Tsmitty4005
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First thing you can do is stop eating all sugar and simple carbohydrates, potatoes, rice, bread, etc. this isn't a cure but from what I have heard from many research doctors this seems to slow progression down. You can go to dementia care blazers on YouTube lots of info on Alz.
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Reply to NOLAsaints
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There is a fair bit of information about Lewy Bodies in the site. Click on Care Topics on the top right of the screen, then on L for Lewy Bodies. There are 8 articles and just under 200 old questions and discussions to read. That might be an easy place to start collecting personal information and ideas, even if it doesn’t make great reading for you. Very best wishes, Margaret
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Reply to MargaretMcKen
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i wont comment on the diagnosis. What i will say. There are solutions to all ur challenges u will face going forward. I dont drive unless long journey. I Uber or ride a bike. Depending on ur type of Customers technology could reduce need for travel even furter without impacting on ur service delivery or quality of product. Kit your house out ahead of time with devices u may need as the disease progresses. Update ur will, Power of Attorney (Authority to act) have a DNR with doctor if u so inclined. etc. Communicate clearly with ur family as to your wishes while u are still able to do so. Lean on the people closest to u for support. They will be there for u.
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Reply to shaynewelman
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My mom has Lewy Body..It began around 83 years old. It was such a gradual thing. Hard to recognize. She said some days her brain was so foggy she could not find words. Her balance got very poor, her arm shook a lot. Walking was difficult at times. We tried PT before she was diagnosed. She began to hear people talking in the house when my brother was not home. She heard music. Mom saw houses across the street on fire with huge flames…she thought a man tried to kidnap her which was untrue..the hallucinations were vivid. That lasted a few months and none since. She slowly was unable to handle her meds or any math chores like her checking account. She was very easily upset and paranoid. She thought people were out to “get her”. Some days ..many days she was clear as a bell but her insight was poor. She would go out and test the ice on the driveway to see how slippery it was! She quickly volunteered to stop driving. Mom is now 87. she mostly has good days but has to live in an assisted living for cognitively impaired persons. She needs a constant easy schedule. She needs quiet. She uses a walker. She occasionally mixes up days and nights. Most people think she is clear and doubt her Lewy diagnosis but we see the huge differences in her. Lewy is not like Alzheimers at all …early on…there are great days with some confusion that is usually short lived…an hour , a day but she has so many great times. I hope this description helps..very scary indeed..Good Luck.
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Reply to Sadinroanokeva
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Probable Alzheimer's is not Alzheimer's. Hippocampus shrinkage is certainly a sign of AD, but there is no single clinical test that diagnoses AD. For the doctor to immediately cause revocation of your driver's license, whether it's AD or LBD, is, to me, premature without having you go thru an assessment of your functionality. There are many people who live a next to normal life in the early stages of a dementia disease.

Is this doctor(s ) a neurologist or PCP? If so, they may want to refer you to a neuropsychologist who will conduct several cognitive evaluations to help better diagnose your symptoms.
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BurntCaregiver Sep 27, 2021
My last long-term care position was for a lady with LBD and it was very gradual for years. She had the diagnosis made seven years before I worked for her because her husband was managing her just fine and they didn't need any outside help.
I was with her for almost three years before she really began to decline. It was a full ten years from initial diagnosis to serious and noticeable decline.
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Find the book The Alzheimer's Myth. Before anybody spits her coffee all over the keyboard at such a notion, the author is not saying that dementia does not exist. Rather he says that all of us have some cognitive changes and decline as we age, and that Alzheimer's has become big business. He advocates treating older people with dignity and encouraging them to continue on with their lives instead of succumbing to dread and doom when they are given a diagnosis of Alzheimer's or other dementias.

He also has some interesting points about what scientists and doctors really know about Alzheimer's and what they don't know. I recommend this book for all of us who are getting older and seeing changes in our thinking processes.
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Reply to OkieGranny
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jimlindac Sep 27, 2021
Who is the author, there a few written under that name. Thanks
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If I were you, Cricket, I would begin with google or any other search engine you have to explore information about Lewy's Bodies IF and WHEN you are diagnosed with it. My brother had a diagnosis of "probable Lewy's Dementia" after testing and scans, but they diagnosed it primarily from his symptoms. Lewy's is quite unique among the dementias in that some go down in stair steps where you rest on a plateau a while, then another step down, and some are inexhorably down, whereas Lewy's can be up down and all over the place symptomatically for a while. My brother, before his death from another cause (Sepsis) didn't progress a lot, and once he decided that he should sell his last home and move to assisted living, asking me to take over his trust and his bill, he relaxed so much that he didn't progress at all. He was fascinating to listen to and could speak about his symptoms and about knowing that what he saw and heard and experienced wasn't always the "real world"but was real to him. While he didn't enjoy knowing what he had, he was glad he knew the reasons for some of his symptoms. As to what those symptoms were? He had episodes of hallucinations, primarily visual and often after getting up at night. They were vivid and he would describe pool parties outside the window even to who was dressed how and even to haircuts. There WAS NO POOL. He would sometimes have swallow difficulties. Sometimes brief hallucinations when anxious, say out to eat or something. He would sometimes not hear people who were on his phone. would suddenly start saying "Hello? Hello". It was a car accident he had that sent him for diagnosis. He had a history of being unbalanced when walking, or not being able to smell things, or to taste,and this was long before Covid 19 and is typical of Lewy's. There are a few sites of Facebook with Lewy's patients. Try not to jump the gun until your testing is done. Wishing you good luck.
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Reply to AlvaDeer
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Sadinroanokeva Sep 27, 2021
Thank you soooo much for your description of your brothers Lewy..We are 3-5 years into moms. We at times wonder is the diagnosis is wrong due to her normalcy at times..her symptoms are EXACTLY like your brothers..she has had a year long plateau..she recognizes when it is acting up….her improvement is probably due to her loving her new assisted living home..Now we see some changes again and she knows she is changing and blames Lewy....such a scary disease..sharing is so helpful. So sorry you lost your brother…thanks again..Linda
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You need to have an evaluation of your driving. Not everyone with early Alzheimer’s needs to surrender a license. Do you have a center for the aging brain anywhere near you? They can provide a driving evaluation.
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Reply to Maidenkaz
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I’m so sorry. This is a mighty blow.

If this were me, I’d try and do as much from home as possible. See if you can work remotely. Have groceries delivered. Even pharmacies deliver.

I would also be proactive. I would do memory-strengthening exorcises, and read as much I could about potential therapies. Try get into the habit of keeping a stringent journal. Record what time you eat and what you eat. Record appointments and reminders on your phone so that it will alert you when you have upcoming events and appointments so you won’t rely so heavily on your memory or be stressed about forgetting something. I’d also make a photo album with pictures and labels so someone won’t one day have to make that for me. Write down memories for your children that you’re scared you might forget.

Sorry, I know this was more than simply asking your question, but also, you may want to talk to a therapist. It’s ok to need to grieve this diagnosis.
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Reply to Lizbitty
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Cricket, I am so sorry to hear this distressing news. I'm glad you have the support of your adult son.

It seems like you might need to consider Lyft, Uber, or other ride services if you need to get places. Please make sure you carry ID with you at all times. Arrange charges befirehand so that no one takes advantage of you money-wise.

Do you think that continuing to work is adviseable? I think I would be guided by your medical team's advice about that.

Please keep in touch here.
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Reply to BarbBrooklyn
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