huntington

Is there a reference bibliography that helps in the management of the patient?

Good morning, I'm a psychotherapist with cognitive-behavioral orientation.
Recently, I was assigned a task in an integrated facility, with guests mainly suffering from Alzheimer's disease, senile dementia and oligophrenia. Average age 75 years.
Together with these guests there is a 54 year old boy with Huntington’s Disease. He was an accountant. Unfortunately, there is no medical record with the history of the patient. The operators told me that he had a sister (the one who then took him to the facility and that unfortunately I have not yet had the pleasure of meeting to interview in person) and that no one in the family had suffered from this disease. I read the last certificate dating back to 2015 made by the neurology department of a Local Health Unit (ASL) in Sardinia, stating that the patient had not substantially worsened.
Well, I did not know this disease but I immediately thought that in the facility, the boy, at this time, had "more need".
The stage of the disease, I think, is advanced. The patient is always seated in the wheelchair, contained with the belt on the front. He has difficulties in expressing himself (and I can understand that... because I don't know whether to attribute his gestures to the disease or to a request for something). He often understands what I ask him if expressed in a simple way. I have noticed that he gets very nervous when he hears the noise made by other patients and when he is hungry (he eats quite voraciously). As I mentioned earlier, not knowing the disease in depth, I documented myself but I notice that there is information regarding the disease but not a bibliography that could be useful from the practical side. I thank you in advance for taking the time to answer to me.

4 Dicembre 2017 - Con il Premio, quest'anno alla sua I Edizione, la Fondazione intende valorizzare i ricercatori italiani che svolgono le migliori ricerche, cliniche o biologiche applicate, pubblicate o in corso di pubblicazione, su riviste scientifiche indicizzate. 

Giorgia has offered to make her positive yoga experience available to other people living in contact with Huntington's disease.

 

Giorgia has offered to make her positive yoga experience available to other people living in contact with Huntington's disease. We have collected his testimony:

 

The containment measures to control the spread of coronavirus have changed everyone's habits, including those of Huntington's families. The extension of the restrictive measures has determined huge changes in our daily lives and the difficulty reached balance risks now to fall apart . It is necessary to think about the consequences that a prolonged isolation can have on fragile people. 

European EHealth Care Model for Rare Neurodegenerative Diseases (Health-RNDis a three-year telemedicine project funded under the European JPND (Joint Programme - Neurodegenerative Disease Research) to six research centers in six different European countries: Charles University of Prague for the Czech Republic , Bloomfield Hospital for Ireland, IRCCS Casa Sollievo della Sofferenza for Italy, Leiden University Medical Center and Huntington Center Overduin for Holland, ULM University for Germany, Galen Research Institute of Manchester to the United Kingdom.

Huntington's Disease, ischemia and swallowing blockage: what to do?

Good evening.
My mom found out she had Huntington's chorea in 2004, as her 3 brothers did. She underwent genetic tests that confirmed the disease. Since then she has always refused any treatment. On 27/11/2016 she was affected by cerebral ischaemia and since then she has been treated at the Policlinico San Matteo in Pavia and then moved to the Maugeri Institute in Via Boezio in Pavia for rehabilitation. Since 14/02/2017 she passed to the Santa Margherita Institute in Pavia for the continuation of rehabilitation. As a matter of facts, ischemia has caused, among other things, the block of swallowing. Now we have been advised to evaluate a residential care unit (Residenza Sanitaria Assistenziale, RSA) for definitive hospitalization.
I wanted to ask you for advice on the best solution for my mother.
I thank you in advance.