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

@sillyblone @graziellaz
Sorry about each of your husbands. I'm not a doctor, but I'm just checking that they have tried a medication like requip along with L/C? It helps me with motor functions every day. (Sorry if this is repetitive.)

@graziellaz
Yes, It seems to be a pattern. My spouse has seizures which keeps him from doing some rehab.He has been using his walker more. He is able to walk freely at home. Following directions is not easy for him to understand. Since Parkininson's is a movement disorder most patients and or family members get frustrated for the fear of falling. Actually , my spouse fell on our driveway. He did not want to wait to get in the garage where the floor is flat. I think he forgets what he is able to do and what he cannot. He of course is in end stage Parkinsons. Limited things that he can or cannot do anymore has been hard for him. He tells me " I want to be normal again". I just try to keep him positive or suggest something like a movie or a puzzle, cards, etc. That does not always work. Keep a dairy of things that stick out to you and or/changes that concern you. Stay positive, which is exhausting and overwhelming at times. If you need a good cry..do so. Allow yourself to be whatever emotion you have and by all means take care of yourself..You matter too.🫂💞

@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.

@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!! 💕🫂

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?

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.

@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 ?

@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.