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

I’m so depreed

Hi @anitaxblack339, learning you have Parkinson's is upsetting. It sounds like you also have little support and no company on this journey. I can understand that this makes you depressed and feeling alone.

I'm glad that you've reached out here on the forum about Parkinson's so you can meet others living with PD.

I look forward to learning more about you. Are you taking levodopa and carbidopa to treat your symptoms? What symptoms do you have.

Dear anitaxblack339,
Please try opening your mind in ways you haven't. It's not easy but it's doable. If your insurance covers it, talk to a therapist to help you get through your desperation. I just talked to my newest therapist today, and he's a lung cancer survivor. I knew he could relate to my fear over living with Parkinson's.
Yo

It has been helpful for my husband to attend Parkinsons Boxing twice a week for the last couple of years. There are a dozen regulars and they understand each other probably like no one else does in addition to the great exercise. Is there anything like this in your area? He also thinks it’s helpful to have someone to talk to when you’re first diagnosed. I hope you keep writing here.

I have said it before that the exercise programs for Parkinson’s are very helpful. The boxing classes with others is very helpful for not only helping physically but mentally. Mt husband will ask questions of the other men about meds and doctors. It has been good for him . Although he does the CLIMB classes since he takes a blood thinner. He has had Parkinson’s for 8 yrs. Check the classes out.

My husband is a Vietnam Vet. He was in the Air Force and flew as loadmaster on C130's and was exposed to Agent Orange. He had a heart attack in September 2023 and it has been downhill since then. He had a balloon and a stent. For years, he has had balance problems and a tremor. He is blind in one eye and poor vision in the other eye from macular degeneration. He is depressed, anxious and last week he got Covid, which has knocked him off is feet with fatigue, confusion and now has a hard time getting off the bed. He was hospitalized in the VA hospital in February 2024. He walked in with a white cane and was wheeled out two weeks later, being discharged to a group home. I found out he was being neglected and verbally abused by one of the caregivers so I moved him to a memory care facility that is better able to deal with his physical needs. He has been diagnosed with MCI (Mild Cognitive Impairment). He now has incontinence at night because he was afraid to ask the caretake to use the urinal or go to the bathroom. He is in Depends in the daytime and a diaper at night. They use chucks on the bed, just in case. I find it very hard to visit him and many times leave in tears because his downhill spiral gets to me as there is nothing I can do to help him. I was going daily, but need my self care, so now take off 1 - 2 days per week. It is so hard watching a loved one go downhill and there is nothing I can do to stop it. I have turned him over to God. There is a poem that has helped me called: Footsteps in the Sand. There are times I need to be carried by God because I just can't do it. I have read some of the posts and can identify. This is a tough road supporting someone with PD.

My heart goes out to you in such a difficult situation. You are not alone in feeling helpless as your spouse deteriorates before your eyes. You may want to consider joining a virtual caregiver support group; many are available online through a variety of organizations (Mayo Clinic, hospitals and health care systems, Parkinsons Disease, Alzheimer's Disease, etc.) and faith-based groups. An in-person caregiver support group might also be of help to you if that is available/accessible.

I also spent 20 months in Vietnam and spent it in the back of a C130. I remember those 55 gallon drums with Thor orange band. There were times when I and other team members slipped in the wet agent orange from drums leaking. Today I have bad tremors and it may take many months to see a neurologist. We were just young men doing our duty for our Country. My prayers are with your husband, and stay strong and god bless you.

Thank you for your reply. Yes, I am seeking out caregiver groups. Thanks for those suggestions. I met an angel at a new caregiver support group at our neurologist's office. She helped me find a suitable place for my husband where they care for his physical needs because I am unable to do that. She matches places to the person's needs and the cost to me was zero as the facility paid her. I'm new to this forum, so not sure if I am allowed to give out her name and number. I was at wits end and she just took over, got him out of the group home without my giving them 30 days notice and God did for me what I could not do for him or myself by sending her to me. I am most grateful because things are much better for my husband now as he is treated with dignity and respect.

Sorry you are having a bad day. I read on this forum that someone's neurologist said, "Every day is different." I am finding out that is true for my husband also. Sunday he was terrible, couldn't get out of bed without assistance and could not stand or move. Yesterday he was walking with a walker. Prayers to you that tomorrow you will have a better day.