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

@hopeful33250 Yes, Thsnk you for reaching out. I’m pretty isolated. Friends and family no longer live in NYC which is where I live. I have a lot of telephone support but no live persons to give me hugs, hold my hand, etc. We married late and do not have children. While friends tried to be helpful on the phone, I’ve faced all of the big decisions alone and by myself, all while grieving the decline of a vital man. I’ve gotten myself some help-a social worker for support and resource finding, a therapist to work through my feelings. I’m the kind of person with mobilizing anxiety-I don’t stop until I get it done. When getting it done was finished, I could cry when alone. I’ve taken myself out to dinner from time to time and while I’m OK eating alone, it’s no fun.What has helped me is distance walking almost daily, blitzing out over TV where I could forget about my troubles and getting enough sleep. The biggest challenge was accessing our money which I now have control over and am the POA. I recently joined some organizations in order to make new friends and get involved. There are still many things to take care of but the really big ones are more in control now.

@janetgeller9 I'm so glad to hear of all of the progress you have made in taking care of yourself! Please accept my virtual hug and continue reaching out and finding the support you need.

Will you continue to post and let me know how you are doing?

I was diagnosed with PD in June 2025 and put on Carbidova-Levadopa. Can only function on half a .5mg pill morning and at bedtime. Seeing a movement disorder specialist. Fatigue overwhelms me a good deal of the time which prevents me from keeping up with daily living. About 2 weeks ago I decided to request blood tests to rule out any deficiencies. Sure enough, my ferritin level was only a "9" and I saw a hematologist who had me come in for a blood infusion. Now the infusion is causing fatigue but hoping I can regain some of my lost energy.. Anyone else deal with PD fatigue and on meds that help for this??

@hopeful33250 I appreciate your interest. Yes, I can’t promise to post regularly but I will. Everyday, there is a need for more assistance and more money is being spent. Right now, I’m in need a of geriatric care manager. In NYC, the lowest I found so far cost $200. an hour.

Hola. Buenas noches a todos. Teneis de perdonar que os escriba en español. Pero, lo siento es la lengua con la que me podré expresar mejor. Deciros que vivo en Barcelona (Catalunya). Tengo 85 años. Hace 16 meses me diagnosticaron IP. Me gustaria intercambiar vivencias con personas en situación parecida a la mía. Vivo con mi esposa y tengo 2 hijos (precisamente hoy el mayor ha cumplido 60 años) y 4 nietos. Desde el diagnóstico, no salgo de casa (sólo lo he hecho para ir al médico). Francamente, mr gustaria poder salir para dar un paseo, tomar el sol en el parque, ver a los amigos, ir al pub a tomar algo. No sé. En casa la lectura ayuda mucho. Desde el inicio he pasado por bastantes episodios sintomatológicos. Pasando por la pérdida de equilibrio y las caídas iniciales, hasta los síntomas no musculares que se han ido sucediendo. Problemas con el aparato digestivo, estreñimiento, etc. Actualmente la situación es: no duermo (unas 3/4 horas al día) problemas en la vista (veo doble o desenfocado) y en los oídos (alucinaciones) cosquilleos en los pies. Seguramente me dejo algo, Pero pienso que lo mejor es no preocuparse demasiado y mirar la vida con optimismo
Me alegraria que este mi primer escrito por y para ustedes (que espero que alguien pueda traducir al inglés) les pueda ayudar en la IP. Me voy, pues. Buenas noches. Sean felices.

Hello @agusti,
I am glad to read your post (it was easily translated into English). I am sorry to hear that Parkinson's has created so many limitations. I am wondering if you have begun any medications? If so, have the medicines helped any of your symptoms?

Exercise is an important way to stay more active. Has your doctor suggested physical therapy? If you would like to exercise at home, here is a link to some YouTube videos that might help keep you limber and more active. https://www.youtube.com/results.

What are your most difficult symptoms now?

@hopeful33250

Qué tal Teresa? Te agradezco que hayas podido contestar. Ya sabes que la gente de PI se emociona con detalles como este. Sí, claro que tomo medicamentos, Contienen levodopa, carbidopa y yoligapona. Y sí. Al principio ayudaron bastante con los síntomas. Por ejemplo, en el movimiento. Pero, sinceramente, en la actualidad dudo que hagan ningún efecto. Continuaré tomándolos, al menos hasta febrero (es cuando tengo que ver a la neuróloga) De echo, creo que la levodopa, con el tiempo satura al cuerpo y su efecto es inv¡erso. No sé. hay que esperar. See and wait. No entiendo cómo es posible, como decia un compañero de foro, que hayan necesitado 10 años para diagnosticar. (?) En mi caso, desde el primer día que me caí en la calle. al cabo de un mes ya tuve diagnóstico. PARKINSON me dijo la doctora. Recuerdo la poca gracia que me hizo. Y esto fué hace 17 meses. Y seguimos rabiosamente alzados. No hay otra actitud. Y tomarlo todo con buen humor, aunque resulte difícil. E intentar comprender a los familiares que no comprenden.
Quiero pensar que el Parkinson no me limita, sino que únicamente molesta. Ahora mismo, el último síntoma que he padecido es el de ruidos en la cabeza, mareos, alucinaciones, equilibrio difícil, oir voces.
Todo ello con falta de sueño. (3/4 horas al día). Y gracias, muchas gracias, pero no. No voy a hacer physical therapy. No he hecho nunca y no voy a empezar ahora. Y menos después de perder 20 Kg el último año. Ah! Se me olvidaba, Yo todavía fumo. No me riñas. ¡Alguna pequeña satisfacción hemos de tener!
El otro día empecé a escribir. "Memorias de un enfermo de Parkinson". Escribir y leer es bueno para la enfermedad. Màximo si, de momento, no tengo problemas motores.
Te dejo ya. Saluda de mi parte a todos los amigos parkinsonianos Un abrazo.

Hi - thanks for adding me to the group. I’m 74 and it’s almost a year since I’ve been diagnosed officially. I live in the Isle of Man and feel that services that have been provided so far have been excellent.

Hello @dharma51 and welcome! I'm glad to hear that you are getting good medical services where you are located.

As this is your first post, please share, as you would like to, something about your journey with PD. For example, how long ago were you diagnosed; what symptoms led to the diagnosis; have medications or physical therapy helped?

@agusti It was good hearing from you again. I am sorry to hear that you are resistant to physical therapy. Exercise combined with medication really is a great way to delay the progression of the disorder. Here is a link to an article about the benefits of exercise. I hope you can translate it:
medication:https://www.yalemedicine.org/news/can-exercise-help-people-with-parkinsons

From my personal experience, I know that exercise and physical therapy have been very beneficial. I wish you well as you journey with this disorder.