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Not looking for “tips” /advice- just empathy for caregiver spouse
I feel very lonely because I have not been able to find anyone who truly understands. Friends try to be supportive, but no one really gets it. I have tried several support groups, but my husband doesn’t really “fit” into any of them, so it makes me feel more alone, like what is really going on? My husband was diagnosed with PD in 2018. My sister has had PD for 22 years. I know people say every Parkinson’s profile is different, but theirs is very different from each other. Sis exhibits the classic motor symptoms, mostly. Falling, dyskinesia, voice, facial masking. DBS helped her a lot. So I thought I knew what to expect for my husband. His symptoms have been progressing very differently. He seems confused one day and “with it” the next, but overall his judgment is “off”, he is what I call an “unreliable witness”, ie. confabulations, misunderstandings, miscommunications, just overall illogical- not exactly delusional but sort of. REM sleep disorder, dysregulation (too hot/too cold, low BP), word salad, poor executive function, anxiety, etc.. He started having hallucinations and in 2022, the neurologist agreed that it was beginning to look like Lewy Body Dementia. (PDD because of the timing) He also shuffles, falls occasionally, but still manages all his ADLs. So, I started joining LBD groups, but their spouses are so much worse and progress so much faster. And after the doc changed the meds, things seemed way better. So I thought, maybe garden variety PD after all. So I joined a PD caregivers support group, but they talked a lot about motor symptoms and wheelchairs, which also didn’t fit my experience. My husband’s progression is glacially slow, and he’s really a lot like a toddler -very willful, stubborn, contrary, wants to be the boss even though I have to take care of everything even slightly complex-which is pretty much everything and he can’t seem to recognize his limitations. So it’s exhausting but he can walk, dress, shower, etc. I just feel like we’re in limbo and when I hear and see others who have PD, he kinda fits the profile, and others who have LBD he kinda fits the profile… so I wonder, is this something else? Or can anyone relate and say, oh, yeah, that sounds like it’s gonna progress to….what?
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Hello @hmt and welcome to the Parkinson's support group on Mayo Connect. I am glad that you felt comfortable expressing your situation here on this forum. I wish there were some answers that I could provide, however, like you said Parkinson's will manifest itself in different forms with different individuals. There is no "one-size fits all" description.
While you indicated that you are not looking for advice, I just need to mention that it is important that your husband be seen by a movement disorder specialist. They are neurologists with special training in disorders like Parkinson's. Is he currently being seen by a movement disorder specialist? Has he been examined for a possible LBD diagnosis? Here are links to discussions about LBD:
https://connect.mayoclinic.org/discussion/lewy-body-dementia-1/
https://connect.mayoclinic.org/discussion/communicating-challenges-with-lewy/
And here is a link to a Mayo Clinic Newsfeed Post,
--Lewy Body Dementia Caregiver Resources
https://connect.mayoclinic.org/blog/dementia-hub/newsfeed-post/lewy-body-dementia-caregiver-resources/
On Mayo Connect we also have a caregiver's support group. Here is the link to those conversations. https://connect.mayoclinic.org/group/caregivers/
I would encourage you to look through those discussions. I think that you will find many of those conversations to be helpful.
I hope you find the support you need. Will you continue to post in any of these discussion groups?
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2 ReactionsI can tell you that some of this relates to my husband . He is different almost everyday! Do not know if I am getting my nice husband or the other person that raises its ugly head. I felt that talking in groups did not help. I went home feeling worse then I went. We used to workout at the YMCA ..which was 3x a week for Parkinson patients and their caregivers. It was awsome. But some were worse off then other's and was disheartening to my husband. He says why me? I have to bathe him, help him get dressed , shave etc. He loves his feet soaked and I actually give him a pedi w/o polish. He remember me all the time. He has other conditions that makes his journey hard. I am doing everything and sometimes I just want to cry or scream..but then I remember he deserves dignity with love. I don't get relief unless I ask my friend. Hugs to you ! LBD is not fun. My brother has it and he is in hospice and only 67yo. He masks, had DBS which I thought it was a waste. My Dad died from complications of Parkinsons. He had the dx earlier and so did my brother. I know what to expect. No one understands unless they live it. It actually is easier to take care of our kids when they were little than this.Hugs and kudos to you and your family.
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5 ReactionsThank you for the response. He does see a neurologist, who is a movement disorder specialist. The doc thinks it is Parkinson’s Disease with Dementia, and explained that is essentially the same as LBD, except for the timing of symptoms. I just wonder if it’s the right diagnosis.
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3 ReactionsI can understand your questioning the diagnosis, @hmt. It is always helpful to be able to put a label on a health issue like this. I'm sure you would feel better if you just knew for sure what you and your husband is dealing with.
Are there any other movement disorder specialists that he could see for a second opinion?
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1 ReactionI would get a second opinion if you feel unsure about what is going on with your loved one. It is really up to you , as we do the best we can. Hugs
I would recommend a second opinion as well. My wife was diagnosed with Parkinson’s disease about two years ago. It has progressed quite rapidly with the tremors being the least problematic symptom. She has experienced dementia along with multiple other issues. The question I have had is what the most accurate diagnosis might be.. It seems likely to be one of three: Parkinson’s with the dementia, Lewy body dementia, or multiple system atrophy. We are getting the second opinion from a new neurologist next week. I hope he will be able to shed some light on the likely progression going forward and we might manage it. No one can really know what it’s like to be either the patient or the caregiver without experiencing it. I can relate to everything in both the original post and all the replies. Best of luck to you and your husband.
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3 ReactionsThank you! I appreciate it. Today is a good day for us! I feel like I am speaking to my husband who is loving and thoughtful.
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2 ReactionsI cherish those good days.
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2 ReactionsI agree. We even went shopping.
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1 ReactionDr. Charles Brenner mentions the NoPark trial in Norway at about the 10-minute mark. https://www.facebook.com/groups/1061386374039781/?fref=nf The trial itself can be viewed at clinicaltrials dot gov. search Parkinson's disease and nicotinamide riboside.