Living with Parkinson's Disease - Meet others & come say hi

Hi @agusti - I'm tagging some fellow members in this discussion who may identify with your symptoms and feelings about others truly understanding you and what's going on with your body with Parkinson's, like your fingers not working right on a keyboard. Please meet @js2022 @hopeful33250 @nova11723 @sillyblone and many others.

They can click on "view translation" to read your message, and the translation reads quite well.

Some members in a different Mayo Clinic Connect support group, Epilepsy & Seizures, have talked about seeing a neuropsychologist for emotional and practical support in dealing with their illnesses and making mental and physical adjustments to do so. Is this something you have considered?

Are you also the caregiver for your wife amidst the memory problems you mentioned she is dealing with?

Creo qu éste es el lugar indicado para publicar mi experiencia.
Hace 2 años me diagnosticaron Parkinson y desde entonces he experimentado diversos síntomas, unos más molestos que otros. Aparecen y desaparecen. Lo ideal, cuando aparece un síntoma, seria poder comentar con mi neurólogo, a la mayor brevedad, lo que me está ocurriendo. Esto, normalmente, no es posible.
Entonces no veo otra salida que comentar con la familia (mi grupo de apoyo teórico más próximo) para que me tranquilizara, me apoyara y me ayudara en lo posible. Pero mi mujer tiene problemas de memoria terribles y necesita más apoyo que yo. Mis dos hijos nunca han entendido la enfermedad y creen que ayudando en tareas mecánicas (ir a comprar cosas o medicamentos que necesito, por ejemplo) ya cumplen con lo que se pide a alguien que quiere apoyar de verdad.
Por ello recurro a las urgencias médicasy al hospital. Allí, al menos, encuentro la paz y la compresión necesarias. Cuando estoy al límite no veo otra salida. Todo ello entre la incompresión y el enojo de los míos.
¿Qué debo hacer, pues?
Ayer noche por ejemplo, ocurriò que estava conversando con un amigo, via watshup,, y de pronto los dedos dejaron de obedecerme. No acertava con las teclas. Me puse cada vez peor. Fuí´incapaz de componer una frase corta en media hora. Cada vez más nervioso tiré el teléfono y tardé un buen rato en poder dormir. No sabía qué ocurría y no tenía a nadie a quien acudir . Ahora mismo me está ocurriendo algo parecido. aunque no tan fuerte, con el teclado y el mouse del ordenador, mientras estoy escribiendo a Mayo-Clinic.
¿Qué puedo hacer? ¿Quién puede ayudarme?

@js2022
I had a terrible experience with Crexont too. It made my anxiety so much worse. I prefer the tradiotional option: Simenet.

My name is Janet S. I am 73 years old and found out I have PD about one year ago by a pet scan and I use a movement disorder specialist as my neurologist. I've been on Crexont for a few mos. now. It had helped me more when I first started but now I get inner tremors between doses and unrelenting fatigue that makes me take long naps when I get super tired. Will see or call the neurologist soon to see if any rx changes can help with this horrible fatigue. Anyone else with PD here dealing with the same thing? (I had thought my psychiatrist could help me with the depression//anxiety I've been treated for for man years but so far no rx changes by him.) The hot weather makes my fatigue even worse. Any input from anyone else out there with PD? Thanks!!

@hopeful33250
Thank you for trusting me to give information! Everyone please pray for me to have strength and the ability to do all of these changes! The time it takes to take names off of assets is enough in itself! Just a reminder.. make sure everything is in order before your loved one can no longer legally make decisions! It has been easier for me in some instances! The funny part is that I have to prove I was married and the next line said when was I born!! Lol

Please keep posting, @timber2026. We have many members who are here to support you. One of our members, @sillyblone, has been a caregiver to several family members with Parkinson's.

@timber2026
Thank you both for your service! my father was a Vietnam Veteran, and my mother certainly served every second he was away. Prayers for you both

@hopeful33250 Thank you for the links! I will definitely look into them. No family in our state. Friends but they have their own issues. My husband is a Vietnam Veteran. They have all kinds of support systems that I am learning about. Thank you so much 💓

Hello @timber2026

I admire your desire to keep him with you for as long as you can. There are some other discussion groups on Connect that you might find helpful. Here are the links:
--Communicating Challenges with Lewy Body Dementia
https://connect.mayoclinic.org/discussion/communicating-challenges-with-lewy/
--Caregivers: Lewy Body and Emotional Effects
https://connect.mayoclinic.org/discussion/lewy-body-dementia-1/
Do you have a support system of family and/or friends available to help you? This is a situation where you will need others.

@spatase
I had a bad experience with Crexont too. The tried and true (and cheap) Simenet has been working for me for many years. Incidentally, has anybody experienced taking Simenet for so long starts being counterproductive, such as causing involuntary movements or just not working any longer?