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I have Pick's Disease
lollyred
Posted: Thursday, April 5, 2018 2:50 PM
Joined: 2/23/2018
Posts: 3


I have Pick''s Disease. I unable to get my words formed, and to get my mind around the words I want to express. I am unable to addition, subtraction, multiply, and divide. I want to get my words formed, and I stutter. The thing that is most problematic is with Pick''s Disease is because the diagnosis and the death is around five years. I want reach out to those people who have Pick''s Disease.
Lane Simonian
Posted: Monday, April 9, 2018 10:25 AM
Joined: 12/12/2011
Posts: 4345


Welcome here, lollyred.  I did not realize that Pick's disease and frontotemporal dementia are the same thing.  There are people here who either have frontotemporal dementia or whose spouse has had it.  You might repost using the latter term and also post it under the younger onset Alzheimer's disease forum which gets more views than this forum.  I would like to see your post get more responses and better responses than you are getting here.
Lane Simonian
Posted: Monday, April 9, 2018 10:38 AM
Joined: 12/12/2011
Posts: 4345


Certain antioxidants can be used to treat Alzheimer's disease, so I looked some information about using them for frontotemporal lobe dementia and found this:

Little solid evidence exists that antioxidants and other supplements help those with FTD. You and your family members should talk with your healthcare provider about whether to try antioxidants and other supplements, such as coenzyme Q10, vitamin E, vitamin C, and B vitamins to support brain health.

https://www.hopkinsmedicine.org/healthlibrary/conditions/nervous_system_disorders/frontotemporal_dementia_134,77

Feru-guard (a combination of ferulic acid in Angelica archangelica and rice bran oil) has shown some positive treatment effects, but it is not available in the United States.  I am not sure if a ferulic acid supplement would produce similar effects.

Effect of ferulic acid and Angelica archangelica extract on behavioral and psychological symptoms of dementia in frontotemporal lobar degeneration and dementia with Lewy bodies.

 

RESULTS:

Treatment with Feru-guard led to decreased scores on the Neuropsychiatric Inventory in 19 of 20 patients and significantly decreased the score overall. The treatment also led to significantly reduced subscale scores on the Neuropsychiatric Inventory ("delusions", "hallucinations", "agitation/aggression", "anxiety", "apathy/indifference", "irritability/lability" and "aberrant behavior"). There were no adverse effects or significant changes in physical findings or laboratory data.

I hope that you will be able to get some advice and insights from others on this site.


Iris L.
Posted: Monday, April 9, 2018 11:43 AM
Joined: 12/15/2011
Posts: 15435


Welcome, lollyred.  I'm sorry that you have received that diagnosis.  I have similar difficulties although from a different cause.  I am learning to compensate as much as I can.  Do you have a support system?


Iris L.


Michael Ellenbogen
Posted: Tuesday, April 10, 2018 5:50 AM
Joined: 11/30/2011
Posts: 2047


Lane Simonian wrote:
Welcome here, lollyred.  I did not realize that Pick's disease and frontotemporal dementia are the same thing.  There are people here who either have frontotemporal dementia or whose spouse has had it.  You might repost using the latter term and also post it under the younger onset Alzheimer's disease forum which gets more views than this forum.  I would like to see your post get more responses and better responses than you are getting here.
Are you saying Picks and FTD are the same? If so  according to my diagnosis I now fall  in the FTD category. I supposedly have Semantic dementia. One never knows for sure. 

Mimi S.
Posted: Tuesday, April 10, 2018 7:55 AM
Joined: 11/29/2011
Posts: 6450


Welcome to our world, lollred.  I'm so sorry for your diagnosis, bur so glad you found us.

I'd suggest that yu get involved in Best PRACtICEs.

There is a lot of evidence that it slows down the progression of Alzheimers. 

I don't know about Pick's, but the life style is good. if thus is a major change of life style, slowly is the word.

1. Meditteranean DIET. A LITTLE WINEM ESPECIALLY RED IS OK. 

NO SMOKING.

2. Physical exercise. 

3. Mental exercise. A variety is good. No need to buy expensive programs. 
Crossword, sudoko, label photographs. Write memoir, etc. Read.

4.Socialization. Maintain or increase. Most of us do not like large grousm but smqall groups are fine.

5. Take meds if prscribed.

 


 


Lane Simonian
Posted: Tuesday, April 10, 2018 10:46 AM
Joined: 12/12/2011
Posts: 4345


I was not aware of the following a week ago:

FTD [Frontotemporal Dementia] used to be called Pick's disease after Arnold Pick, a physician who in 1892 first described a patient with distinct symptoms affecting language. Some doctors still use the term "Pick's disease." Other terms you may see used to describe FTD include frontotemporal disorders, frontotemporal degenerations and frontal lobe disorders.

https://www.alz.org/dementia/fronto-temporal-dementia-ftd-symptoms.asp

Frontotemporal dementia or FTD is a progressive disorder of the brain. It can affect behaviour, language skills and movement.

 The main subtypes of FTD are called behavioural variant FTD and primary progressive aphasia or PPA.

PPA can be further split into two main subtypes, one of which is called semantic dementia or SD.

The first symptoms of SD are usually very subtle changes in finding words or understanding them. This is thought to be due to loss of semantic knowledge, our understanding of what things are or their meaning.

http://www.ftdtalk.org/ftd-factsheets/factsheet-5-what-is-semantic-dementia/

I am sorry for your diagnosis, too, lollyred.  This is a great place to come for suggestions and comfort.


Lane Simonian
Posted: Tuesday, April 10, 2018 11:03 AM
Joined: 12/12/2011
Posts: 4345


The implications of these findings are just starting to sink in, Michael.  I will try to see if there are any treatments for variations of frontotemporal dementia.
Michael Ellenbogen
Posted: Wednesday, April 11, 2018 12:31 AM
Joined: 11/30/2011
Posts: 2047


Lane Simonian wrote:
The implications of these findings are just starting to sink in, Michael.  I will try to see if there are any treatments for variations of frontotemporal dementia.
Thank you Lane as I have learned  something  new.

Iris L.
Posted: Wednesday, April 11, 2018 12:39 PM
Joined: 12/15/2011
Posts: 15435


Many of the caregivers are caring for LOs with these types of dementias. You might include FTD, or aphasia  in your search words.  


Here are a couple of websites with good information.


http://memory.ucsf.edu/ftd/overview


https://ftd.med.upenn.edu/about-ftd-related-disorders/how-do-we-diagnose-ftd-disorders



Iris L.

Iris L.
Posted: Wednesday, April 11, 2018 3:37 PM
Joined: 12/15/2011
Posts: 15435


Jo C. just posted an extensive history of her and her mother's experiences with getting a diagnosis on this thread.

https://www.alzconnected.org/discussion.aspx?g=posts&t=2147540699


Iris L.

Lane Simonian
Posted: Thursday, April 12, 2018 1:07 PM
Joined: 12/12/2011
Posts: 4345


Certainly, Michael.  This is the most optimistic study that I have found so far regarding the treatment of frontotemporal dementia (perhaps too optimistic).

Rapamycin can alleviate frontotemporal lobar degeneration

https://www.news-medical.net/news/20120929/Rapamycin-can-alleviate-frontotemporal-lobar-degeneration.aspx


Lane Simonian
Posted: Thursday, April 12, 2018 1:37 PM
Joined: 12/12/2011
Posts: 4345


This is a bit technical, but quite interesting.

Alleviation of neuronal energy deficiency by mTOR inhibition as a treatment for mitochondria-related neurodegeneration

 mTOR inhibition is beneficial in neurodegenerative disease models and its effects are often attributable to the modulation of autophagy [removal of damaged or harmful proteins, for instance] and anti-apoptosis [preventing cell death]. Here, we report a neglected but important bioenergetic effect of mTOR inhibition in neurons. mTOR inhibition by rapamycin significantly preserves neuronal ATP levels [energy for cells]

Ferulic acid induces mammalian target of rapamycin inactivation in cultured mammalian cells.

Ferulic acid (FA), a naturally occurring polyphenol abundant in vegetables and rice bran, is known to possess a potent antioxidant activity, thereby protecting cells from oxidative stress...These results indicate that ferulic acid is almost the equivalent of rapamycin in the ability to inhibit mTor (TORC1), which makes it a potent activator of basal autophagy.

Ferulic acid does seem to help with behavioral problems in frontotemporal dementia, perhaps it helps with semantic issues as well.  I am not sure if the combination of ferulic acid with rapamycin would provide additional benefits or alternatively would be of harm.  Maybe a doctor trained in frontotemporal dementia would know the answer.


feudman
Posted: Friday, April 20, 2018 7:31 AM
Joined: 6/5/2014
Posts: 1101


Because the condition Dr. Pick studied in the 1890's is now so much better understood, and it's variations have been categorized, it now is named for the areas of the brain it affects; the frontal & temporal lobes. FTD stands for Fronto-Temporal Degeneration. Although over 70% of cases are the behavioral variant (FTDbv), 10-15% are of the speech variant, Primary Progressive Aphasia (PPA). Up until 2011, two variants were recognized, but there are now three: Semantic, Non-fluent Anti-Grammatic, and Logopenic. Several other rare types complete the FTD umbrella of variants.

There have been many discussions on the main forums if you search using "FTD" or "Fronto-Temporal." These threads include many links for more info & support. "What If It's Not Alzheimer's" Ed. by G.& L. Radin is a good reference. 


 
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