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

@graziellaz
Hello. My spouse has been on Carbodopa forever.. It helps and ten sometimes it helps ok. He is in end stage. My spouse has not used Ripinorole. I know it is used for Restless Leg Syndrome. I am not sure if my brother or my father used it. Both of them were further along when they were diagnosed. I stayed on top of my spouses symptoms so as to use whatever would help. Carbo worked well for a long time. Most of these medications can cause dizziness and nausea. I would question everything and have questions ready for your physician. This is a very complex and debilitating over time. Prayers to you and your spouse. It is a tuff disease. Be his advocate even when he thinks he has it under control..I hope you both get the best treatment advice that you can. 🫂

@sillyblone
Have you or your family experienced the roller coaster that we seem to be on -- for about a month after acute PT he is doing well and out of the clear blue he suddenly has rubber legs and can't stand on his legs/walk even with a walker if someone isn't holding him up. No doctor or MRIs seem to be able to explain why or what is happening. The best they can do is say "it may be that he gets a virus" - very scary as I know this has happened several times before and then we do the "go to ER, run tests (he gets weaker as he stays in bed" and then to acute PT. So frustrating.

@graziellaz
Unfortunely, yes! My spouse should glow in the dark. Numerous CT, MRI's and EEG. He has seizures and sometimes low blood sugar's. I can usually tell if it is one or them both. He has has PD since 2013. When u know what it looks like..trust your gut. I went with him so many PT visits and he is good for awhile..then again he is weak and won't exercise( and they are so easy to do) He gets apathetic..Leave me alone as I want to watch TV. I used to do them with him and he took no initiative to go further. We worked out for 5.5 yrs. at the YMCA! It was a Parkinsons program. Get hooked up with the Parkinson's Association/Micheal J. Fox. They have you tube videos that are good. Don't be discouraged if he does not want to participate. It seems to be the case for some men. I think us women call it"Pride". Keep in touch and I will answer as soon as I realize u have sent me something. Caregiving is hard and no one ever asked for it. Keep ur head up and don't feel like u cannot question a physician. I did it quite frequently through his dealing with every issue u can imagine. Strong women stick together!! I would like to know when you find out new things and maybe I can spare u from the healthcare system that does not always look out for our loved ones!! 💕🫂

@hopeful33250

I was just diagnosed today … I am still in the shocked phase of recovery.

@sillyblone Hi, I’m the one with PD. Just diagnosed and I’m 66 (female). I have mild symptoms but don’t know where to go from here. My neurologist is dealing with my very bad migraines right now. I feel like I’m falling apart since turning 65.

@graziellaz
Yes, he has been taking Carbidopa/Levodopa 25-100 mg 3x a day and rOPINIRole 3x a day for about 8 months. It has helped with his walking as his right foot doesn't get stuck as much. Since he's currently in the hospital where they have PT geared to Parkinson, the Neurologist there wants to increase the Carbidopa and wean him off the rOpinirole. I asked that she consult with his current neurologist before doing that.
How do I get in touch with @sillyblone ?

Hello. My husband has PD for about 8 years.
We are in Rochester MN and wish to inform about a Support Group in Rochester at 125Live.
3rd Thursday of the month at 1:30.

Helo @sheilaz

As it has been a while since you last posted, I was wondering how your husband was doing. Are his symptoms being well-controlled?

@graziellaz
Unfortunely, yes! My spouse should glow in the dark. Numerous CT, MRI's and EEG. He has seizures and sometimes low blood sugar's. I can usually tell if it is one or them both. He has has PD since 2013. When u know what it looks like..trust your gut. I went with him so many PT visits and he is good for awhile..then again he is weak and won't exercise( and they are so easy to do) He gets apathetic..Leave me alone as I want to watch TV. I used to do them with him and he took no initiative to go further. We worked out for 5.5 yrs. at the YMCA! It was a Parkinsons program. Get hooked up with the Parkinson's Association/Micheal J. Fox. They have you tube videos that are good. Don't be discouraged if he does not want to participate. It seems to be the case for some men. I think us women call it"Pride". Keep in touch and I will answer as soon as I realize u have sent me something. Caregiving is hard and no one ever asked for it. Keep ur head up and don't feel like u cannot question a physician. I did it quite frequently through his dealing with every issue u can imagine. Strong women stick together!! I would like to know when you find out new things and maybe I can spare u from the healthcare system that does not always look out for our loved ones!! 💕🫂

@sillyblone
Thank you so much for your reply. My husband is currently in acute rehab after I took him to ER when he could no longer stand on his feet. He was fine the day before. This has happened twice so far -- once it was 22 days after he got out of rehab (and I take him to outpatient rehab 3x week) and the most recent was 32 days after he came out of rehab. Not one doctor can explain why this happens almost every month. They told me that I should leave him in bed for a few days and see if he's better.....basically they do not have any explanation for this. They did increase his Carbidopa/Levoidopaado and think this should help. Only time will tell. He's coming home from rehab next week and now we start counting the days again. Is this what happens with your husband? My husband does great at acute rehab -- he works hard and comes home in pretty good shape but refuses to do any work with me or by himself. It is exhausting. Thanks again for your info. All the best.