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Shakes    0

Hello All, I'm 43 and was diagnosed at 40. I'm married and have two school aged children and have been unable to work since Jan of last year due to cognitive issues. Last fall I tried going to a local center for PD patients but almost everyone there was in there 70's and 80's. There were a few younger people but they were in their 60's and had children my age or close to. Everyone was really nice but I couldn't relate to them. 

As the title states, I feel like I am loosing my mind. I used to have a really great memory (better than most) and was articulate (or so I was told). I could joke and make conversation with people fairly easily. I had an intellectually challenging job and worked my way up to a really good position within a large company. All that is gone now though. 

Now I feel like I am on an island. I've been able to maintain some of my pre-parkinson's friendships but the cognitive issues are really affecting me socially. I loose my words and train of thought during conversation. I recently have been unable to follow when people give me too complicated of instructions or speak too fast. I am having to limit the things I do for the family, ie. complicated paperwork... this was the first year I couldn't do our taxes. I got lost driving to my movement disorder specialist's office a couple of weeks ago. When I told her about it she said it was probably due to my Parkinson's meds wearing off. She sent me twice for neuropsyc testing over the past year and they say I have issues with executive functioning and slow processing but my memory is good (meaning it gets in and I can recall after a delay). 

I feel like a complete moron now a days. I am always behind in conversations and don't get a lot that would come to me easily. I freeze at times when I speak. Sometimes words pop into my head but I do not use them because I cannot remember what they mean until after the conversation is done. Likewise I am always remembering things... concepts and so on, after conversations are done. To top things off my wife still wants to socialize with other couples. Overall she's been very understanding, patient, and always there to help with with anything I need  but she is a social person. As is my youngest child so I seem to always be around people feeling awkward and uncomfortable. 

Anyone else experiencing issues like this? 

 

Edited by Shakes

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stump    452

If your wife is "very understanding, patient, and always there to help with with anything I need" then you're a damn fool if you do anything but hold on to her.

 

Rest of it might be worth responding too when I'm not so tired, but seriously, just because your wife wants to be more social than you are presently comfortable with is no reason to contemplate divorce.  You might need some help with adjusting to your new limitations, but your wife is a willing partner in all of your struggles.  Honor that.

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Shakes    0

I am not considering divorce.  That last part was a failed attempt at a joke. I followed it with a ;-). I took it out to avoid confusion. Sorry about that. 

Edited by Shakes

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DaveN    425

Shakes,

I'm a lot older than you but I still work full time. I struggle with all of the issues you state. I participated in a study a couple of years ago to determine if Azilect can aid with cognitive decline.  I ended up with the placebo during the trial. Afterwards I started taking Azilect and my processing has shown some improvement.  I'm definitely not declining as fast as I was.  I still lose words, get confused, and take longer to do tasks that years ago I would have done in half the time. I'm a programmer and multi-tasking is part of my job description, something I struggle with on a daily basis.  Am I better than I once was - NO. However, a compromised me is still better than a twenty/thirty/forty something operating at 100%. I've forgotten more than most of them will ever know. I plan on retiring in 3 1/2 years or applying for disability if I hit the point when I can't do my job anymore.

My current bet is on retirement.

Dave

Edited by DaveN

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miracleseeker    668

Your wife is under tremendous stress but is still relatively young and not the one with the disease.  I would be nicer to her if I were you.  She has every reason to bail on you and could do it.  I understand you are confused and scared about the future but keep in mind that you are not the only one this is affecting.   Please check your meds with your doctor.  Sometimes too much can make your mind go blank.   It is so tough to have this happen to anyone.  Nothing will be the same ever again and what you planned on will change now.  Hang in there. 

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Serenity Now    19

Shakes,

That must be so difficult to have those cognitive issues at your age. I'm not much older than you, so I can imagine how frustrating it is for you.  I only have mild brain fog, so although I can't understand or give you advice, I do empathize with you.  

While I have no dx, except that my issues are in my head, I understand what it's like to have your body feel like it's betraying you and getting annoyed, frustrated or sad because of the changes.

I am sorry you came here to vent, and you were told you're a fool, moron and that you need to be nicer to your wife all because of a joke.  Yet I can see how the first two may not have known it was a joke, and Dave could have posted his reply as you did.  Plus, I know sometimes context can be misconstrued online.  

But I have read your post a few times and see NO reason to assume you don't appreciate your wife or don't already treat her nice.  I don't normally respond to posts because I am in limbo, and I'm probably not wanted here.  Yet I hope you realize this is a wonderful forum with lots of helpful people.  

Edited by Serenity Now
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Gardener    193

Hi Shakes,

I haven't felt moved to respond to posts lately but your difficulties cognitively are very close to my own so I know what it feels like to lose the person you once were and adjust to the very different person you have become.  I'm having a tough time with social interactions whether it is family, friends, or strangers.  I feel comfortable in my own surroundings with my husband but beyond that it is hard for me to interact.  I have noticed that I do not easily make eye contact and I'm aware that my facial expression is not revealing what I'm feeling inside.  I have a hard time coming up with things to say to people so I tend to ask the same questions (boring!!).  Unlike Alzheimer disease, I am aware of these difficulties which seems to make the problem worse.  I'm quite a bit older than you and can easily avoid social interactions - it must be very difficult for you at your age with a young family.  Make sure that the people you are closest with understand that the disease is likely masking your inner feelings and ability to engage socially. 

Hang in there.  Gardener

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stump    452

I get that you intended humor, but I would caution against that specific kind of humor.  It can turn serious if you aren't really careful.

 

That said, I recently had a neuropsychological exam.  It revealed some memory issues and fluency issues that were unexpected, at least for the doc doing the exam.  My executive function, for the most part, was "Superior" for my education adjusted age group.  A bit different from what was expected for someone with a PD diagnosis as executive function is typically where the deficits are found.  The memory issues put me in the "low normal" category and verbal fluency was "mildly impaired" according to the report I got.  I think that's because when asked to list every word beginning with a certain letter I stumbled pretty badly.  In conversation, other than occasionally needing a little more time than normal for word finding I'm fine.  And outside of the test I could think of way more words.  

 

Anyway, while I may have sounded a bit harsh in my first reply, please do stick around and contribute and learn from this group.  I wish this group wasn't necessary, but am glad for it at the same time since it is necessary.

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Luke    23

Actually, a pretty good post, IMO.  I could have written it myself.  I was extremely angered when my wife kept mentioning how her social life has been ruined by my lack of interest in what we used to enjoy together.  I didn't ask for the change in out social priorities, and I certainly don't like it; but I considered it a guilt trip on her part.  Was I being selfish?  Maybe, but marriage is a two-way street.  I need to understand her concerns; but she needs to understand that my mind is now different than before.

I'm actually appalled by some of the responses here.  I don't think you're a moron, and I don't think that you have to be "nicer to her" so she doesn't bail on you.  You are reacting to negative cues like any other normal person would.

Talk it out; do research together; and find common ground, if possible.  If she doesn't attend all of your Dr appointments; bring her along and talk to the Doc!   I think my wife and I finally worked through it, but it took a while.  Hopefully, you can as well

Thanks for posting! 

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Linda Garren    733

Shakes, you explained your situation very well, and I'm sorry some misunderstood that you were joking about divorce.  I'm sure those who got upset did not understand it was a joke and would have replied in their usual very compassionate and kind and welcoming way otherwise. So please don't be put off by their responses.  They are good people.  And you sound like you'll fit in very well.  Welcome.

I can totally, totally relate to what you wrote about cognitive issues and how hard it is to remember words and also the problem of forgetting in the middle of talking about something just what it was you were talking about.  Also, I've found I've had to ask people to please talk directly into the phone and to slow down so that I can follow them.  I explain simply that I have Parkinson's and that it makes it difficult to keep up with what people are saying when they talk fast. It's interesting that I've had various reactions to that...mostly from young people whom I can tell feel really uncomfortable to slow down.  Seems they don't really know how to do it sometimes.  :-)  Understandable since they have grown up with peers who also talk fast and, I guess, have adapted.  It's one of the situations that as an older Parkie makes me realize that I really am older, and I remember how impatient I felt when I was younger and had to slow down with older people. 

Serenity, I liked your post.

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DaveN    425

Shakes,

I edited my comment due to the misunderstanding.  Our wives have a lot to deal with and I'm sure your wife has some extra stress with young children. One thing I have noted in my life is that most people you interact with are oblivious to your problems because they are focused on their own. I lose and get stuck on words a lot. It can be embarrassing when your having a technical discussion with a peer and can't find the proper word.  Some people fill in the blank for me and I don't even think they realized they are helping me.

I have not publicly disclosed that I have PD.

Dave

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miracleseeker    668
55 minutes ago, Luke said:

 I don't think that you have to be "nicer to her" so she doesn't bail on you.  You are reacting to negative cues like any other normal person would.

Yeah ok...  everyone sticks around no matter what right?  Good luck with that one Luke!    The person with the disease is at a disadvantage as harsh as it may sound but it's reality. As you get worse over time you will need someone to take care of you.  I'm a caregiver so I'm your future unless of course you can do it all and a cure will be around the corner.   Many times people react and lash out at their loved ones without even thinking.  Appreciate the person that you cannot do without because that day will come before you know it.

Edited by miracleseeker
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Luke    23
3 hours ago, miracleseeker said:

Yeah ok...  everyone sticks around no matter what right?  Good luck with that one Luke!    The person with the disease is at a disadvantage as harsh as it may sound but it's reality. As you get worse over time you will need someone to take care of you.  I'm a caregiver so I'm your future unless of course you can do it all and a cure will be around the corner.   Many times people react and lash out at their loved ones without even thinking.  Appreciate the person that you cannot do without because that day will come before you know it.

Boy, talk about missing the point of the post.  Thanks for bringing sunshine to everyone's lives!  Telling us we are at a disadvantage and keeping our fingers crossed that our loved ones stick by us?? I have two "care-givers" in my immediate family, and two others in my extended family.  I know the drill, but thanks for sharing your opinion.  Thank goodness you will never be in my future! I will appreciate my wife, and as such, she should appreciate me for who I have become.  We are a team, and hopefully we will stay that way; without having to rely on narcissistic care-givers like yourself.

And when you quote my post, please use it in its entirety, so you don't "frame" your opinion.

Move along please....

P.S. My apologies to the OP.  IM me if you wanna talk further about this topic, as we are in the same boat.  Another good subject matter polluted, unfortunately, that needs to be moved offline.

Edited by Luke
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Discovery    378

Miracle you are a huge contributor on this forum both as caregiver and as a friend to many of us with PD.

Do exactly that...move along from this thread and stay positive! There's always going to be personality upsets.

Thank you for being you.

D

 

 

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LAD    201

Getting back to the original post... I've been very lucky in my PD progression or lack of progression. I have watched my neighbor with PD for over 20 years go from being completely in a psychosis state and sitting on my driveway to being completely functional now and exercising with me at the gym. His meds were messing him up. Too many different things. 

I would ask for a med eval. I'm not an expert but maybe that may shed some light on things. 

As for the caregiver... That's something I'm terrified to think about. I hope my husband gets some outside help so he can be my husband and not my caregiver all the time. It's unrealistic to think he won't be my caregiver but hopefully we can find some balance. 

Good luck to you. 

 

LAD

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miracleseeker    668
7 minutes ago, Discovery said:

Miracle you are a huge contributor on this forum both as caregiver and as a friend to many of us with PD.

Do exactly that...move along from this thread and stay positive! There's always going to be personality upsets.

Thank you for being you.

D

 

 

Ah... Thanks D.  You get me!   

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Pathfinder    64
20 hours ago, Shakes said:

Hello All, I'm 43 and was diagnosed at 40. I'm married and have two school aged children and have been unable to work since Jan of last year due to cognitive issues. Last fall I tried going to a local center for PD patients but almost everyone there was in there 70's and 80's. There were a few younger people but they were in their 60's and had children my age or close to. Everyone was really nice but I couldn't relate to them. 

As the title states, I feel like I am loosing my mind. I used to have a really great memory (better than most) and was articulate (or so I was told). I could joke and make conversation with people fairly easily. I had an intellectually challenging job and worked my way up to a really good position within a large company. All that is gone now though. 

Now I feel like I am on an island. I've been able to maintain some of my pre-parkinson's friendships but the cognitive issues are really affecting me socially. I loose my words and train of thought during conversation. I recently have been unable to follow when people give me too complicated of instructions or speak too fast. I am having to limit the things I do for the family, ie. complicated paperwork... this was the first year I couldn't do our taxes. I got lost driving to my movement disorder specialist's office a couple of weeks ago. When I told her about it she said it was probably due to my Parkinson's meds wearing off. She sent me twice for neuropsyc testing over the past year and they say I have issues with executive functioning and slow processing but my memory is good (meaning it gets in and I can recall after a delay). 

I feel like a complete moron now a days. I am always behind in conversations and don't get a lot that would come to me easily. I freeze at times when I speak. Sometimes words pop into my head but I do not use them because I cannot remember what they mean until after the conversation is done. Likewise I am always remembering things... concepts and so on, after conversations are done. To top things off my wife still wants to socialize with other couples. Overall she's been very understanding, patient, and always there to help with with anything I need  but she is a social person. As is my youngest child so I seem to always be around people feeling awkward and uncomfortable. 

Anyone else experiencing issues like this? 

 

My husband has vascular dementia and Parkinsonism. We are fourteen months from diagnosis, our lives have been affected in so many ways. I am his full time caregiver and happy to do anything for him. I am a very social person who has a lot of friends and activities. Hubby can still be alone so l can do some socializing, but we had to adapt quickly when dealing with this new challenge to our lives. I adjust how often l socialize , my friends also know if l cancel at the last moment l am needed at home. I don't resent that l am not as social because he has cared for me with such devotion and would do it for me in a heartbeat if the roles were reversed.

Have you tried socializing at home, or one of your favorite places to go? I know hubby has anxiety sometimes, here at home when people drop in he is more comfortable. Maybe talking with your wife and meeting in the middle can give you both a workable solution.

l wish you well, this PD is an awful lot to deal with!

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Pathfinder    64
3 minutes ago, miracleseeker said:

Ah... Thanks D.  You get me!   

Of course we get you!! I admire you for the care you give your Mother. Fighting her battles with medications and making her as safe and comfortable as you can. You rock!🤗

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miracleseeker    668

Cyber hug coming at ya!!!  Thanks P.  :lol:    We should move along though... CG's do not have PD so our opinions do not matter.   shhhh...  let's go.  

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otolorin    28

@ shakes,

People who don't have PD,do not exactly know how we feel.The cognitive issues could be very fustrating,and the anxiety that comes with it makes you become anti=social.The decline in executive functioning and slow processing of thoughts could make the social anxiety worse.So I would suggest you try to socialise more.I feel exactly the same way and when I think about the future,it gets more scary.Conditions like PD put additional stress on relationships,and I have read some online articles,where it led to divorce,because the caregiver just couldn't cope anymore.Let 's just pray that God would prevent us from losing our minds completely.I think you should test your mental faculty more by doing crossword puzzles and practise multitasking at home,especially now that you stop working.I am temporary on disability,and thinking of going back to work.I am not sure how I will perform,as my job is very demanding and require some multitasking.I noticed vigorous aerobics helps improve the cognitive issues temporarily.I have experienced getting lost while driving,and I noticed,this happened whenever I am anxious thus not concentrating well.It is hard trying to convince wifey that you have PD,and because of it you cannot socialise,especially when your wife is social.Not to talk of persuading wifey to go to Doctor's appoinments with you.Till now my wife sometimes forgets that I have PD,and I usually have to remind her."Miracle seeker" you are not alone.All PWPD are seeking miracles too.We all need miracle asap.Do PWPD develop severe dementia?I am not so sure about this.I understand some develop mild dementia and others do not.But I don't know what percentage of PWPD develop dementia.@ shakes,was it the cognitive issues that made you stop working or other symptoms?

 

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MurrayPD2    219

Communicating with my wife and children has become more challenging. I have been spending more time trying to explain things to my wife; which has helped a lot.  Being a father on the hand, it pretty difficult now.  I don't think ahead what I am doing with them, so I don't think I am teaching them well.  I often stammer when I speak and I am speaking softly.  One of my children has hearing problems, so I that is even more challenging.  Unfortunately, my best hours are at work and they often see the apathetic and slow part of me.  I am often forgetting appointments or other important matters going on in their life.  So, yeah, it is a challenge, but as long as you and your wife figure out a balance, it gets better. 

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otolorin    28

Don't get me wrong miracle seeker, everyone is welcome on this forum,be PWP or CG.This is a support forum as I once stated.I was just expressing myself in general,as it relates to living with parkinson,when you have a family and getting them to understand how you feel.It's very tough.

Edited by otolorin
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miracleseeker    668

No offense taken.  The bad apples of this forum always gets removed sooner or later.  I hope you will stay and contribute for a long time to come.  Have a nice day. 

 

 

 

 

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