For those who care for someone with Parkinson's disease
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| Hi, I am new to the forum and very glad to have other people that are going through what I am living. My husband has had the dx of PD for 4 years and it is progressing quickly. He has been staring more and more and I am not sure if this is normal? Any input would be appreciated!! |
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Welcome! You have a beautiful name, Kayla! Yes, staring off and having a blank stare are normal to PWP (person with Parkinson's). Lack of facial expression is, too. When you couple that with a low and monotone voice, it makes the caregiver keep saying, "What? I can't hear you!" Etc. Again, sadly all part of this awful PD! My husband has had an amazingly slow progression...he's just not at all typical! But, we also remain very positive and actively keep living our lives as best we can. I also am very possibly one of few people who accepts that PD is the problem in our lives, NOT him. We have been married over fifty years and have faced PD through his Mom's journey, so we accept what is coming and do our best to accept the changes over which he has no control. Everyone has a different PD journey and each has his or her plan for coping. Ask questions. Your new friends here will do their best to answer from their experience. Hug him as long as you can and, again, welcome. Good luck to you both! |
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My husband is in his 10 year of PD and only 69 years old. It is getting harder and harder for me especially since he started having dementia 2 years ago. He also stares in to space and sits and picks his clothes or skin on his hands. He watches TV but only to a certain extent and not interested in much. He doesn't carry on a conversation and that is something I miss. My friend even mentioned that she misses the social part of life with friends. So whenever anyone comes around to visit, I do most of the talking. |
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| Lynnie, the picking at his clothes can be a side-effect of a little too much of a dopamine agonist. If he is taking any, I'd mention this to his Neurologist to maybe back off a little on it and see if it helps him? |
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| Al, I didn't know that picking at things was a side effect of too much dopamine agonist. Doctors put my husband on Apokyn to allievate off times. That "cure" was worse than being "off". On Apokyn lots of strange behavior, including picking at things and punding, and instant sleepiness. We've stopped using Apokyn. For some that drug is a God Send. Unfortunately, not for him. Dx61/now 72. |
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| Mak, I figured I would toss the agonist out as a possible cause. A couple years ago my PCA's Grandmother in a nursing home in Hawaii started to "pick" at the design on her dress (colorful fish) she became obsessed with them. So much so that they started calling her the fish lady. My PCA's Dad called her at work (my home) to see if she had any ideas what was going on? Was this normal? My PCA asked me if I had any idea I asked what med's she was on and one was an agonist recently added I said it might be that so He asked the Doctor to back off it a bit and see. When they lessened the dosage the fish lady was gone she stopped picking at her clothing and was more coherent. So for her it worked lessening or cutting out that drug but as you say Mak what is a G-d send for one doesn't mean it works for all. |
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Al, thank you again for the heads up on Apokyn. It really threw my husband off. Just another challenge. I keep trying to understand the fluctuations. Hope you are well. |
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Kayla, Wanted to welcome you to the forum. My DH is 66 & has had PD for about 7 yrs. This disease is so isolating that having this outlet where you are not judged IS WONDERFUL. Just reading people's responses is soothing. I find it hard to get out to the support groups so having this to resort to, like I said, is a life saver. It is hard for family to relate to what you are going through. Jane said it well...we're all part of this club we never wanted to join. We have no choice but to try to forge ahead and try to do the best we can for as long as we can....one day at a time. Stay strong. |