1. < Parkinson's Disease

I was recently diagnosed with LBD with Parkinsonism: Any advice?

Posted by dgriffith24 @dgriffith24, Jul 17, 2021

I was diagnosed with LBD with Parkinsonisms last October. I live in rural Southern Illinois snd I am having a hard time finding a neurologist familiar with my diagnosis. I know no one with this disease. So my question is, does anyone else have trouble with slobbering, slurred speech and stiffness and body pain all over? Some days it is debilitating. My Aracept seems to be working well. I’m on the lowest dose of Carbadopa Levadopa. Is there anything that helps with these symptoms. I am 60 years old and had to go on disability my illness is so bad. Thank you for any help or any advice you can offer.

Interested in more discussions like this? Go to the Parkinson's Disease Support Group.

Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Jan 12, 2022

@jecheon Hello Ahn and welcome to Mayo Clinic Connect.

I appreciate you posting about your husband's voice improvement. As I have both Parkinson's as well as a paralyzed vocal cord, I have also used reading out loud and singing to improve my voice. You are right when you say that it is an enjoyable way to improve a difficult problem.

Singing and reading out loud can also improve mood as well as the thinking process.

As this is your first post on Connect, please share, as you are comfortable doing so, a history of your husband's diagnosis of LBD. For example, how long ago was he diagnosed and what therapies has he had?

I look forward to hearing from you again.

REPLY
jecheon | @jecheon | Jan 13, 2022

My husband (74) was diagnosed of LBD in March, 2021. The telltale symptoms of LBD, orthostatic hypotension and loss of smell, started about 25 years ago. Rem-sleep disorder, difficulty of word finding, voice softening, intolerance of
noise, and withdrawal followed. Then hallucinations started. Finally last spring his optomotrist at Mayo refer him to a neurologist who diagnosed my husband's LBD.

My husband is on Donepezil (generic Aricept) 10mg which greatly improved his daily functions and curtailed hallucinations, He has done a few other things which seem to improve his conditions: 1. daily chanting exercise (12 minutes) to strengthen his vocal cords and muscles around and inside of his mouth. 2. TMS (Transcranial magnetic stimulation) for depression, 3. Stopped statin drug. 4. daily walking (around 2 miles, 40 minutes). 5. Regular stretching (20 - 30 minutes, 3 - 4 times a week. 6. Singing (he has a wonderful singing voice), reading out loud and computer games
for words finding, attention and so on.

Diet-wise,
We cut out most sugar from our diet and reduced processed snacks (no chips, no cakes, donuts and all the good-bad stuff). We eat lots of vegetable and fruit and mostly whole grains. To our diet, we added mostly wild-caught fish, some chicken or turkey, little red-meat. We also consume quite a bit of eggs, two a day, and yogurt.

He is going to start a weekly speech therapy and is meeting a physical therapist to assess his needs.

So far he is doing okay mentally and physically. Despite scuffing up his shoes while walking, his gaits are steady and brisk. We are very grateful and hope to slow down the progression of LBD. We are also very grateful for the doctors and the scientists who are working hard to help us.

I don't know what helps or what doesn't. But, it feels good to know that I am learning and trying. Also I am very lucky
to have a friend who lost her husband to LBD about a year ago. Her knowledge and wisdom have been invaluable.

Thank you everyone for being there!!!

REPLY
3 replies
Moderator
Colleen Young, Connect Director | @colleenyoung | Jan 21, 2022
In reply to @jecheon "My husband (74) was diagnosed of LBD in March, 2021. The telltale symptoms of LBD, orthostatic..." + (show)
@jecheon

My husband (74) was diagnosed of LBD in March, 2021. The telltale symptoms of LBD, orthostatic hypotension and loss of smell, started about 25 years ago. Rem-sleep disorder, difficulty of word finding, voice softening, intolerance of
noise, and withdrawal followed. Then hallucinations started. Finally last spring his optomotrist at Mayo refer him to a neurologist who diagnosed my husband's LBD.

My husband is on Donepezil (generic Aricept) 10mg which greatly improved his daily functions and curtailed hallucinations, He has done a few other things which seem to improve his conditions: 1. daily chanting exercise (12 minutes) to strengthen his vocal cords and muscles around and inside of his mouth. 2. TMS (Transcranial magnetic stimulation) for depression, 3. Stopped statin drug. 4. daily walking (around 2 miles, 40 minutes). 5. Regular stretching (20 - 30 minutes, 3 - 4 times a week. 6. Singing (he has a wonderful singing voice), reading out loud and computer games
for words finding, attention and so on.

Diet-wise,
We cut out most sugar from our diet and reduced processed snacks (no chips, no cakes, donuts and all the good-bad stuff). We eat lots of vegetable and fruit and mostly whole grains. To our diet, we added mostly wild-caught fish, some chicken or turkey, little red-meat. We also consume quite a bit of eggs, two a day, and yogurt.

He is going to start a weekly speech therapy and is meeting a physical therapist to assess his needs.

So far he is doing okay mentally and physically. Despite scuffing up his shoes while walking, his gaits are steady and brisk. We are very grateful and hope to slow down the progression of LBD. We are also very grateful for the doctors and the scientists who are working hard to help us.

I don't know what helps or what doesn't. But, it feels good to know that I am learning and trying. Also I am very lucky
to have a friend who lost her husband to LBD about a year ago. Her knowledge and wisdom have been invaluable.

Thank you everyone for being there!!!

Jump to this post

What a helpful and practical post, @jecheon. When do speech therapy and physical therapy start?

REPLY
1 reply
jecheon | @jecheon | Jan 21, 2022
In reply to @colleenyoung "What a helpful and practical post, @jecheon. When do speech therapy and physical therapy start?" + (show)
@colleenyoung

What a helpful and practical post, @jecheon. When do speech therapy and physical therapy start?

Jump to this post

. He had the first session for both therapies.. He was given a test for the speech therapy to establish the baseline. For his physical therapy, he was given about 10 new exercises to strengthen his upper body. ( He has already been doing 20 minute pilate moves every other day for last four years, which helps a lot.)
We also have an appointment with a occupational therapist to learn how to carry out daily routines, such as carrying, lifting, falling and etc.

REPLY
wanieta | @wanieta | May 4, 2022
In reply to @jecheon "My husband (74) was diagnosed of LBD in March, 2021. The telltale symptoms of LBD, orthostatic..." + (show)
@jecheon

My husband (74) was diagnosed of LBD in March, 2021. The telltale symptoms of LBD, orthostatic hypotension and loss of smell, started about 25 years ago. Rem-sleep disorder, difficulty of word finding, voice softening, intolerance of
noise, and withdrawal followed. Then hallucinations started. Finally last spring his optomotrist at Mayo refer him to a neurologist who diagnosed my husband's LBD.

My husband is on Donepezil (generic Aricept) 10mg which greatly improved his daily functions and curtailed hallucinations, He has done a few other things which seem to improve his conditions: 1. daily chanting exercise (12 minutes) to strengthen his vocal cords and muscles around and inside of his mouth. 2. TMS (Transcranial magnetic stimulation) for depression, 3. Stopped statin drug. 4. daily walking (around 2 miles, 40 minutes). 5. Regular stretching (20 - 30 minutes, 3 - 4 times a week. 6. Singing (he has a wonderful singing voice), reading out loud and computer games
for words finding, attention and so on.

Diet-wise,
We cut out most sugar from our diet and reduced processed snacks (no chips, no cakes, donuts and all the good-bad stuff). We eat lots of vegetable and fruit and mostly whole grains. To our diet, we added mostly wild-caught fish, some chicken or turkey, little red-meat. We also consume quite a bit of eggs, two a day, and yogurt.

He is going to start a weekly speech therapy and is meeting a physical therapist to assess his needs.

So far he is doing okay mentally and physically. Despite scuffing up his shoes while walking, his gaits are steady and brisk. We are very grateful and hope to slow down the progression of LBD. We are also very grateful for the doctors and the scientists who are working hard to help us.

I don't know what helps or what doesn't. But, it feels good to know that I am learning and trying. Also I am very lucky
to have a friend who lost her husband to LBD about a year ago. Her knowledge and wisdom have been invaluable.

Thank you everyone for being there!!!

Jump to this post

May I ask why you stopped the statin drug? My husband also has LBD and takes a statin daily.

REPLY
jecheon | @jecheon | May 4, 2022

I am really sorry about your husband diagnosis.

Statin lowers cholesterol that our brains need to function. Cholesterol helps neurotransmitter to connect brain cells. (please research on this. There are good amount of materials on this on line.)
Our neurologist also was concerned about the level of my husband's cholesterol (130). Without statin, my husband cholesterol stays under 200.

Our integrative physician also suggested that for my husband LBD is more urgent issue than high cholesterol is.

Please do research and ask many questions (alternative treatments, supplements, exercises, therapies and clinical trials and etc.) to your doctors. Some may help and some may not. And we don't know which is which. Most importantly, it's good for your and your husband's body and mind. That's what we have been experiencing.

With prayers,

p.s. Sugar and high carb (refined) are your enemy #1.

REPLY
1 reply
wanieta | @wanieta | May 5, 2022
In reply to @jecheon "I am really sorry about your husband diagnosis. Statin lowers cholesterol that our brains need to..." + (show)
@jecheon

I am really sorry about your husband diagnosis.

Statin lowers cholesterol that our brains need to function. Cholesterol helps neurotransmitter to connect brain cells. (please research on this. There are good amount of materials on this on line.)
Our neurologist also was concerned about the level of my husband's cholesterol (130). Without statin, my husband cholesterol stays under 200.

Our integrative physician also suggested that for my husband LBD is more urgent issue than high cholesterol is.

Please do research and ask many questions (alternative treatments, supplements, exercises, therapies and clinical trials and etc.) to your doctors. Some may help and some may not. And we don't know which is which. Most importantly, it's good for your and your husband's body and mind. That's what we have been experiencing.

With prayers,

p.s. Sugar and high carb (refined) are your enemy #1.

Jump to this post

Thanks for your reply. I will look into this.

REPLY
1 reply
pcacare | @pcacare | May 6, 2022
In reply to @wanieta "Thanks for your reply. I will look into this." + (show)
@wanieta

Thanks for your reply. I will look into this.

Jump to this post

Thanks for the great posts by you and @wanieta. My 75 yr old husband, Vietnam veteran/Agent Orange exposure is diagnosed with Parkinsonism associated with Posterior Cortical atrophy (PCA) and Corticobasal syndrome (CBD). He lost reading abilities 2-3 years ago with memory decline, followed by left side weakness and an almost lifeless arm. He can no longer enjoy daily dog walking, has had a few falls but is riding Air-dyne bike here for strength. Neurologist increased Donepezil from 10 mg to 20 mg recently. Movement disorder neuro agreed he could try Carbidopa Levodopa, started with half pill. This has reduced aching and icy cold feeling in his arm but not much change to arm and leg mobility or balance. I found good Neuro PT who used a bit of boxing in the routine ! It has been a journey to advocate and find best care for him. Frustrating that Doctors say there are no supplements, or alternative therapies. His daily Statins have not been questioned by Doctors at all. He has been very healthy eater for years with exception of nightly ice cream treat. Clinical trials ?…I wish I could find one ! Asking what is an integrative physician. Every day I wonder what more can I do. Thanks and strength to all

REPLY
1 reply
Mentor
Teresa, Volunteer Mentor | @hopeful33250 | May 7, 2022
In reply to @pcacare "Thanks for the great posts by you and @wanieta. My 75 yr old husband, Vietnam veteran/Agent..." + (show)
@pcacare

Thanks for the great posts by you and @wanieta. My 75 yr old husband, Vietnam veteran/Agent Orange exposure is diagnosed with Parkinsonism associated with Posterior Cortical atrophy (PCA) and Corticobasal syndrome (CBD). He lost reading abilities 2-3 years ago with memory decline, followed by left side weakness and an almost lifeless arm. He can no longer enjoy daily dog walking, has had a few falls but is riding Air-dyne bike here for strength. Neurologist increased Donepezil from 10 mg to 20 mg recently. Movement disorder neuro agreed he could try Carbidopa Levodopa, started with half pill. This has reduced aching and icy cold feeling in his arm but not much change to arm and leg mobility or balance. I found good Neuro PT who used a bit of boxing in the routine ! It has been a journey to advocate and find best care for him. Frustrating that Doctors say there are no supplements, or alternative therapies. His daily Statins have not been questioned by Doctors at all. He has been very healthy eater for years with exception of nightly ice cream treat. Clinical trials ?…I wish I could find one ! Asking what is an integrative physician. Every day I wonder what more can I do. Thanks and strength to all

Jump to this post

Hello @pcacare and welcome to Mayo Clinic Connect. Your husband's health situation does sound complicated and difficult to deal with. I'm glad to hear that he is getting some relief from some of his symptoms with the Carbidopa-Levodopa.

I do admire you for all the work you are doing on his behalf. It is so important to have an advocate when you are ill.

Your husband's exercise routine and seeing a Neuro PT are excellent. We have other members on Connect who also have Parkinson's as a result of Agent Orange exposure, I would like to invite, @johnjames and @ggopher, who are also veterans exposed to Agent Orange.

What is the most difficult symptom you would like to have medical help with right now?

REPLY
1 reply
psvantx | @psvantx | May 7, 2022
In reply to @jecheon "My husband (74) was diagnosed of LBD in March, 2021. The telltale symptoms of LBD, orthostatic..." + (show)
@jecheon

My husband (74) was diagnosed of LBD in March, 2021. The telltale symptoms of LBD, orthostatic hypotension and loss of smell, started about 25 years ago. Rem-sleep disorder, difficulty of word finding, voice softening, intolerance of
noise, and withdrawal followed. Then hallucinations started. Finally last spring his optomotrist at Mayo refer him to a neurologist who diagnosed my husband's LBD.

My husband is on Donepezil (generic Aricept) 10mg which greatly improved his daily functions and curtailed hallucinations, He has done a few other things which seem to improve his conditions: 1. daily chanting exercise (12 minutes) to strengthen his vocal cords and muscles around and inside of his mouth. 2. TMS (Transcranial magnetic stimulation) for depression, 3. Stopped statin drug. 4. daily walking (around 2 miles, 40 minutes). 5. Regular stretching (20 - 30 minutes, 3 - 4 times a week. 6. Singing (he has a wonderful singing voice), reading out loud and computer games
for words finding, attention and so on.

Diet-wise,
We cut out most sugar from our diet and reduced processed snacks (no chips, no cakes, donuts and all the good-bad stuff). We eat lots of vegetable and fruit and mostly whole grains. To our diet, we added mostly wild-caught fish, some chicken or turkey, little red-meat. We also consume quite a bit of eggs, two a day, and yogurt.

He is going to start a weekly speech therapy and is meeting a physical therapist to assess his needs.

So far he is doing okay mentally and physically. Despite scuffing up his shoes while walking, his gaits are steady and brisk. We are very grateful and hope to slow down the progression of LBD. We are also very grateful for the doctors and the scientists who are working hard to help us.

I don't know what helps or what doesn't. But, it feels good to know that I am learning and trying. Also I am very lucky
to have a friend who lost her husband to LBD about a year ago. Her knowledge and wisdom have been invaluable.

Thank you everyone for being there!!!

Jump to this post

After exhibiting symptoms of Parkinson’s (drooling, falling, etc.) that my mom and bro had, I began my neurological journey! After numerous dr. visits, scans, tests, I have finally been diagnosed with extra fluid on my brain with the possibility of a shunt relieving my symptoms! Hallelujah! Still waiting on powers that be to agree on this diagnosis and set up the procedure! What a blessing to finally have some hope! Hoping it can happen! Anyone else have this experience???

REPLY
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