Gli argomenti più ricorrenti nel 2022 sono stati i seguenti:

1. I farmaci
2. Essere caregiver
3. Sintomatologia
4. Burocrazia
5. Riabilitazione
6. Ricerca neurologo
7. DBS
8. Ospedalizzazione
9. La ricerca

La classifica dei post più seguiti nel 2022: Scarica la classifica

Il Comitato Italiano Associazioni Parkinson non promuove ne suggerisce l’uso di alcun medicinale, integratore, device né di altri prodotti ma vogliamo che tutti siano messi in grado di compiere valutazioni e scelte consapevoli e che venga garantito il diritto alle cure in modo equo in tutte le regioni della nostra nazione. Identificazione dei farmaci

Cosa sono gli stati di “ON” ed “OFF” ?

• Wearing ON/OFF si riferisce ad una terapia che offre, o meno, “un buona copertura”
• ON/OFF si riferisce allo stato di un singolo momento ed usualmente è usato dai pazienti riferendosi alla bradicinesia (“Sono sbloccatto /in blocco”)
• Early Morning OFF si intende lo stato di OFF al risveglio.

Dal sito https://pdavengers.com

Cosa è PD Avengers ?

SIGLE SPECIFICHE PER L’ITALIA

PWP – Person with Parkinson’s  – Persona con Parkinson o parkinsonismo (MSA, PSP, demenza a corpi di Lewi)

FwP – Famiglia con Parkinson o parkinsonismo

INTERNAZIONALI

Brain Parts

1. AMY – Amygdala: A small almond-shaped structure involved in processing emotions and memories.
2. BG – Basal Ganglia: A group of nuclei in the brain responsible for motor control and learning.
3. CC – Corpus Callosum: A thick bundle of nerve fibers connecting the two brain hemispheres.
4. CE – Cerebellum: A region at the back of the brain responsible for coordination and balance.
5. CTX – Cerebral Cortex: The outer layer of the brain responsible for higher cognitive functions.
6. GPe – Globus Pallidus externa (part of the brain’s basal ganglia, involved in motor control)
7. GPi – Globus Pallidus interna (part of the brain’s basal ganglia, involved in motor control)
8. HIP – Hippocampus: A seahorse-shaped structure involved in memory formation and spatial navigation.
9. HYPO – Hypothalamus: A region involved in regulating vital functions like body temperature and hunger.
10. MB – Midbrain: A part of the brainstem that plays a role in sensory and motor functions.
11. MED – Medulla Oblongata: The lowest part of the brainstem responsible for autonomic functions.
12. NACC – Nucleus Accumbens: Part of the basal ganglia involved in reward and pleasure.
13. OFC – Orbitofrontal Cortex: A region of the prefrontal cortex involved in decision-making and emotional processing.
14. PFC – Prefrontal Cortex: The front part of the brain involved in complex cognitive functions.
15. PONS – Pons: A part of the brainstem involved in sleep, respiration, and facial movement.
16. SC – Superior Colliculus: Part of the midbrain involved in visual processing and orienting.
17. STN – Subthalamic Nucleus (a target for deep brain stimulation in Parkinson’s)
18. TC – Thalamus: A central relay station that directs sensory information to the cerebral cortex.

Cells and Molecules:

1. DA – Dopamine Agonist: A class of medications that stimulate dopamine receptors in Parkinson’s treatment.
2. DAT – Dopamine Transporter: A protein responsible for reuptake of dopamine in the brain.
3. GABA – Gamma-Aminobutyric Acid: An inhibitory neurotransmitter in the brain.
4. GDNF – Glial Cell Line-Derived Neurotrophic Factor: A protein supporting survival of dopamine neurons.
5. GLU – Glutamate: An excitatory neurotransmitter in the brain.
6. NTF – Neurotrophic Factor: Proteins supporting neuron survival and function.
7. α-Syn – Alpha-Synuclein: A protein associated with Parkinson’s pathology.
8. BDNF – Brain-Derived Neurotrophic Factor: A protein that supports neuron survival and growth.
9. Aβ – Beta-Amyloid: A protein fragment associated with Alzheimer’s disease.
10. TDP-43 – Transactive Response DNA-Binding Protein 43: A protein involved in neurodegenerative diseases.

Common Treatments for Parkinson’s Symptoms:

1. DIET – Dietary Management: A healthy diet can support overall health and well-being in Parkinson’s.
2. DBS – Deep Brain Stimulation: A surgical treatment involving implanted electrodes to manage Parkinson’s symptoms.
3. EX – Exercise: Regular physical activity can help maintain mobility and improve overall well-being.
4. MED – Medication: Various medications are used to manage Parkinson’s symptoms.
5. MIND – Mediterranean-DASH Diet Intervention for Neurodegenerative Delay (diet associated with brain health)
6. SURG – Surgical Treatment: Various surgical procedures can be used to manage advanced Parkinson’s.
7. TMS – Transcranial Magnetic Stimulation (a non-invasive procedure for treating symptoms)
8. TCS – Transcranial Stimulation (a technique used in research and therapy)
9. VNS – Vagus Nerve Stimulation (investigated for potential Parkinson’s treatment)

Diseases and Conditions:

1. ALS – Amyotrophic Lateral Sclerosis: A progressive motor neuron disease.
2. ASD – Autism Spectrum Disorder: A developmental disorder affecting social interaction and communication.
3. CBD – Corticobasal Degeneration: A rare neurodegenerative disorder that shares some symptoms with Parkinson’s.
4. CTE – Chronic Traumatic Encephalopathy: A brain condition linked to repeated head injuries.
5. MSA – Multiple System Atrophy: A rare neurodegenerative disorder with Parkinson’s-like symptoms.
6. PSP – Progressive Supranuclear Palsy: A rare neurodegenerative disorder causing balance and eye movement problems.
7. RBD – REM Sleep Behavior Disorder: Can be an early sign of Parkinson’s.
8. RLS – Restless Leg Syndrome (can sometimes be associated with Parkinson’s)

Fluids:

1. CSF – Cerebrospinal Fluid: The clear fluid that surrounds the brain and spinal cord.
2. ECF – Extracellular Fluid: Fluid outside of cells, including in the brain.
3. ISF – Interstitial Fluid: Fluid in the spaces between cells.
4. LDF – Lymphatic Drainage Fluid: Fluid that helps remove waste products from the brain.
5. IBF – Interstitial Brain Fluid: Fluid in the extracellular spaces of the brain.

Genes and Genetics:

1. 6-OHDA – 6-Hydroxydopamine: A neurotoxin used to induce Parkinson’s-like symptoms in animal models.
2. AADC – Aromatic L-Amino Acid Decarboxylase: An enzyme involved in converting L-DOPA to dopamine.
3. ABCA7 – ATP-Binding Cassette Subfamily A Member 7: A gene implicated in Alzheimer’s disease risk.
4. ABHD6 – Abhydrolase Domain-Containing Protein 6: An enzyme involved in endocannabinoid metabolism.
5. APOE – Apolipoprotein E: A gene associated with Alzheimer’s disease risk.
6. BDNF – Brain-Derived Neurotrophic Factor (implicated in neuroprotection for Parkinson’s)
7. CYP2D6 – Cytochrome P450 2D6: An enzyme involved in drug metabolism.
8. GBA – Glucocerebrosidase: A gene related to Parkinson’s risk when mutated.
9. GCH1 – GTP Cyclohydrolase 1: An enzyme involved in dopamine synthesis.
10. HNRNPA1 – Heterogeneous Nuclear Ribonucleoprotein A1: A protein involved in RNA processing.
11. LRRK2 – Leucine-Rich Repeat Kinase 2: A gene associated with an increased risk of Parkinson’s.
12. PLP1 – Proteolipid Protein 1: A gene associated with Pelizaeus-Merzbacher disease.
13. PRKN – Parkin: A gene associated with familial Parkinson’s.
14. SNCA – Alpha-Synuclein: A protein associated with Parkinson’s pathology.
15. TBK1 – TANK-Binding Kinase 1: A gene involved in immune responses.
16. TET2 – Ten-Eleven Translocation Methylcytosine Dioxygenase 2: A gene involved in DNA methylation.
17. TOMM40 – Translocase of Outer Mitochondrial Membrane 40 Homolog (gene related to mitochondrial function)
18. TGFBR2 – Transforming Growth Factor Beta Receptor 2: A gene involved in cellular signaling.
19. ZNF804A – Zinc Finger Protein 804A: A gene associated with schizophrenia and bipolar disorder.

Medical Terms:

1. BBB – Blood-Brain Barrier: A protective barrier that limits the passage of substances from the blood to the brain.
2. BPI – Beck’s Parkinson’s Inventory (used to assess Parkinson’s symptoms)
3. BISBAS – Behavioral Inhibition and Behavioral Activation System: A psychological model related to personality traits.
4. CNS – Central Nervous System (includes the brain and spinal cord)
5. CT – Computed Tomography (used for imaging in medical diagnostics)
6. DATSCAN – Dopamine Transporter Scan (a nuclear medicine imaging technique)
7. EOPD – Early-Onset Parkinson’s Disease. (diagnosed at a younger age)
8. fMRI – Functional Magnetic Resonance Imaging (used to study brain activity)
9. Hoehn and Yahr Scale – A scale used to measure the progression of Parkinson’s
10. HRQOL – Health-Related Quality of Life (important in managing Parkinson’s impact on daily life)
11. MPTP – A neurotoxin that can induce Parkinson’s-like symptoms in certain cases
12. MRI – Magnetic Resonance Imaging (used to image the brain and diagnose conditions)
13. OFF – Refers to periods of reduced medication effectiveness
14. ON – Refers to periods of improved medication effectivenes
15. PDQ – Parkinson’s Disease Questionnaire (used to assess quality of life)
16. PET – Positron Emission Tomography (used for brain imaging in Parkinson’s research)
17. PPN – Pedunculopontine Nucleus (associated with gait and postural control)
18. REM – Rapid Eye Movement: A sleep stage characterized by vivid dreams.
19. SAD – Seasonal Affective Disorder: A type of depression triggered by seasonal changes.
20. SPECT – Single Photon Emission Computed Tomography (a nuclear imaging technique)
21. UPDRS – Unified Parkinson’s Disease Rating Scale (to assess the severity of symptoms)
22. UPSIT – University of Pennsylvania Smell Identification Test (used to assess olfactory function)
23. VNS – Vagus Nerve Stimulation: Investigated for potential Parkinson’s treatment.
24. VTA – Ventral Tegmental Area (part of the brain related to dopamine production)
25. YOPD – Young Onset Parkinson’s Disease (diagnosed in younger adults)

Non-Profit Organizations and Charities that work with the Parkinson’s Community

1. APDA – American Parkinson Disease Association
2. DPF – Davis Phinney Foundation
3. PDF – Parkinson’s Disease Foundation
4. MJFF – Michael J. Fox Foundation for Parkinson’s Research
5. MPF – Michigan Parkinson’s Foundation
6. PAA – Parkinson’s Association of Alabama
7. PDNSA – Parkinson’s Disease Nurse Specialist Association (U.K.)
8. PMD Alliance – Parkinson & Movement Disorder Alliance
9. PRO – Portland Resources of Oregon
10. WPC – World Parkinson Congress
11. WPP – Women’s Parkinson’s Project

Parkinson’s Medications:

1. ADA – Adenosine A2A Receptor Antagonist: Medications that target adenosine receptors to reduce motor symptoms.
2. CB1R – Cannabinoid Receptor Type 1 Agonist: Investigated for its potential effects on Parkinson’s symptoms.
3. COMT – Catechol-O-methyltransferase Inhibitor: Medications that inhibit the enzyme COMT to enhance L-DOPA effects.
4. CR – Controlled Release: A variation of carbidopa-levodopa that delays the release of the therapeutic responsive.
5. DA – Dopamine Agonist: A class of medications that stimulate dopamine receptors in Parkinson’s treatment.
6. L-DOPA – Levodopa: A medication converted into dopamine in the brain to alleviate Parkinson’s symptoms.
7. MAO-B – Monoamine Oxidase B Inhibitor: Medications that inhibit MAO-B to increase dopamine levels in the brain.
8. MAO-B – Monoamine Oxidase B Inhibitor: Medications that block the enzyme MAO-B to prolong dopamine effects.
9. NMDA – N-Methyl-D-Aspartate Receptor Antagonist: Medications that target NMDA receptors to reduce dyskinesias.

Professional Associations and Universities

1. AAN – American Academy of Neurology: An organization of neurologists providing resources for neurological research and care.
2. EAN – European Academy of Neurology
3. EMA – European Medicines Agency (regulatory body for medicines in the European Union)
4. FDA – U.S. Food and Drug Administration (regulates medical devices and medications)
5. MDS -International Parkinson and Movement Disorder Society
6. NIH – National Institutes of Health (U.S. agency for medical research)
7. UBC – University of British Columbia (Canada)
8. VAI – Van Andle Institute

Therapists and Professionals:

1. ABA – Applied Behavior Analyst: A professional who uses behavioral interventions to address behavior-related challenges.
2. CAM – Confusion Assessment Method: A tool to assess delirium in medical settings.
3. CAMCOG – Cambridge Cognitive Examination: A test for cognitive function.
4. MDS – Movement Disorder Specialist. A neurologist with additional training in Parkinson’s disease and other movement disorders.
5. OT – Occupational Therapy: Therapy to improve everyday activities and function.
6. PT – Physical Therapy: A rehabilitation approach to improve mobility and motor skills.
7. NICE – National Institute for Health and Care Excellence: A U.K. organization providing health guidelines.
8. SLP – Speech-Language Pathologist: A professional who helps with speech and communication difficulties.
9. ST – Speech Therapy: Therapy to address speech and swallowing difficulties

Please note that while we have made efforts to remove duplicates and alphabetize the list, some abbreviations might have different meanings in various contexts. Always refer to trusted medical sources for accurate information. If there is an abbreviation you would like to see added please email Larry@PDAvengers.com

“Come ogni mattina ci arrivano le segnalazioni di tutte le notizie che riguardano il Parkinson. Tra queste un articolo di un giornale pugliese mi colpisce : “Anziano malato di Parkinson rapinato mentre passeggia, arrestato il rapinatore 26enne“. Leggo l’articolo con il cuore triste immaginando la scena. Non sempre le cose sono come te le immagini. Il rapinatore questa volta è stato sfortunato perchè il vecchietto tremolante con il deambulatore ha reagito molto male alla rapina. Non solo si è lanciato insieme alla moglie all’inseguimento del rapinatore che era in bicicletta. Ha chiamato la Polizia chiedendo il loro intervento e dando indicazioni su dove si trovasse.

Il problema è che il nostro eroe ha raggiunto il rapinatore PRIMA dell’arrivo della Polizia che si è trovata davanti ad una scena che mi ha fatto venire in mente un simpatico personaggio della fumettistica italiana – Numero UNO in Alan Ford – : la “vittima” aveva bloccato il rapinatore e stava cercando di farsi ridare il portafoglio brandendo minacciosamente il bastone. Alla vista della Polizia il rapinatore si è arreso ed ha consegnato il portafoglio con tutto il contenuto. Il 26enne è stato arrestato e condotto in carcere con l’accusa di rapina.”

Articolo redatto da Giulio Maldacea il 3 marzo 2020

Il fatto è accaduto  il 2 marzo 2020 a Lecce.. Volevo dare un volto a questo supereroe, c’è sempre bisogno di buone notizie ma in quei giorni molto di più.

Ci riproviamo a rintracciarlo e metterci in contatto perchè credo si meriti ad honorem il titolo di Dopamine Hero. Siete d’accordo ? Ci aiutate a trovarlo ? Vi lascio qui sotto i link della stampa locale. Partirei dalle redazioni e dai giornalisti  …

Articoli locali :

• http://www.trnews.it/2020/03/02/anziano-rapinato-di-500-euro-mentre-passeggia-arrestato-26enne-nigeriano/280353
• https://www.secoloditalia.it/2020/03/immigrato-aggredisce-un-anziano-malato-di-parkinson-lo-scaraventa-a-terra-e-lo-rapina/
• https://www.lecceprima.it/cronaca/arresto-rapina-anziano-lecce-2-marzo-2020.html

La ricerca originale > COVID vs Parkinson

Il Comitato Italiano Parkinson nel 2020 ha avviato una collaborazione con il Prof. Marco Cosentino, Professore di Farmacologia Medica nell’Università degli Studi dell’Insubria di Varese. nella promozione della ricerca: “Impatto dell’epidemia di SARS-CoV-2 sulle persone con Malattia di Parkinson in Italia” basato su un totale di 387 questionari validi compilati.

Un progetto di fondamentale importanza non solo a livello scientifico ma anche come strumento di supporto ad attività di advocacy. Il Prof. Cosentino ci ha messo a disposizione la base dati “grezza” che abbiamo rielaborata ed importata nel nostro database.

Abbiamo potuto rispondere a domande che ci poniamo da anni:

1) Le stime più ottimistiche ipotizzano 220.000 casi di Parkinson. dove viviamo ? Risulta, per il campione coinvolto che il 63% vive in piccoli e piccolissimi centri.

DOVE VIVONO LE PERSONE CON PARKINSON ? 

FASCIA DI ETA’ IN CUI SI E’ RICEVUTA LA DIAGNOSI

Questo dato, imponendo i 50 anni come “sparti acque”, ci permette di affermare che i “giovani”, o Y.O.P.D., sono 1/4 della campione preso in esame (387 questionari). Ovviamente il campione non è rappresentativo dell’intera popolazione nazionale.

RUOLO LAVORATIVO

(NB campione preso in esame (387 questionari). Ovviamente il campione non è rappresentativo dell’intera popolazione nazionale.)

Cortometraggio scritto, diretto, interpretato, prodotto dai fisioterapisti Mattia Tronci (Linkedin) e Mauro Usala della Riabilitazione dell’ARNAS Brotzu di Cagliari. E’ una storia di lotta e di convivenza in cui, immaginando una giornata tipo di una persona con la Malattia di Parkinson, lo scopo è quello di dare qualche consiglio pratico su come affrontarla.

Cosa vuol dire essere un caregiver in questi anni così difficili, in un paese come l’Italia nel quale spesso la cura e la prossimità ai nostri amici o ai nostri cari che si ammalano sono delegate alla volontà e alla disponibilità del singolo individuo?

Non esiste un termine italiano per tradurre caregiver: il dizionario ci propone badante, accompagnatore, infermiere. Ma tutti noi sappiamo che essere caregiver vuol dire tutte queste cose e molto di più.
“To care” vuol dire essere solidale, avere qualcuno a cuore; giver vuol dire donatore, persona generosa.

Ed ecco che i caregiver sono persone generose che hanno a cuore altre persone.

Al contempo, essere caregiver di una persona con Parkinson e parkinsonismi – in Italia – comporta l’acquisizione e l’aggiornamento costante di:

• nozioni scientifiche: neurologia, biologia, nutrizione, farmacologia. infermieristica, psicologia
• nozioni tecnologiche: telemedicina, monitoraggio a distanza, dispositivi indossabili, ausilii
• aspetti legali, burocratici ed  advocacy (riconoscimento dei diritti)

Un mix complesso che spesso va oltre l’amicizia, i legami di parentela, l’amore profondo.