desperate for help

Hello - hope you are doing well. This is after the PD diagnosis in 2009.
In retrospect I was having issues for a few years before thinking much of it. Slight forgetfulness, sometimes had a hard time getting the words out. Then some depresssion set in. That is way outside of my character. With that comes the withdrawal from others, just wanting to be left alone and losing interest in things,
The thing that - on top of the above - was losing the ability to multitask. That has been a must for most of my working years. With what I did, if I couldn’t multitask - I would be a liability.
Then noticing communication problems. Along with the soft voice from the PD, losing track of what is being talked about while in the midst of the conversation. I also forget what I was going to add before I could blurt it out. Then came the getting lost driving. I knew then this thing wasn’t paying around. Since 2019 I have not driven. I’m glad that I got to make it my decision and not later and be told that I wasn’t going to drive.
Now the ability to multitask is all but gone. Reading and comprehending new material is very difficult. Speech communication is more challenging because I am now having some issues with processing facial expressions correctly. I might mistake bored with mad. Then that can set the tone of an attempted conversation. I also cant think fast enough plus I’m slow to get it out. According to the neuro cognitive tests - since 2017 there is a steady decline in “executive function” Went from mild to moderate cognitive impairment in 4 years.
What Ive talked about is just a small list of everything I have noticed and am seeing and hearing (hallucinations) 🙂
I will get a little in more detail on the actual cognitive tests in another post. My wife tells me that I can take a few minutes to say what should take 30 seconds. I guess I like to ramble and go the long way to make a point. I will bet that there is some of that here as well.
This has only taken me 45 minutes to type in. Whew - I’m tired.

Peace
Larry

I totally get it! As if the depression and anxiety aren't paralyzing enough, then we get the guilt and shame on top of it! I can totally relate to everything you wrote. I've been struggling with my depression and anxiety most of my life and I'm 50 years old now. I find that I sometimes have a hard time doing anything, especially things that could help, like exercise, and eating better. I was journaling again, allowing it to be messy and random allowed me more freedom with it, and that helped. I really connect with what you said about a fear of doing things wrong, so not doing them at all, and feeling like you aren't doing your share. I'm so glad to hear that your wife is understanding and supportive. I'm in a fairly new relationship, but he is patient and kind. He doesn't put any expectations on me, and loves me "as is". He knows things may never get better, and could definitely get worse, but he says he's in it for the long haul. Being accepted and loved exactly as I am has gone a long way in helping me to see value in myself as a person, but then I feel like I'm still not DOING anything, so what does it matter? And of course there's that caviat of, how can you truly love someone else when you don't truly love yourself? Well I kind of think it's a chicken and egg kind of thing, it can go both ways, either can come first. I needed to feel LOVABLE first. But I digress... I constantly feel like I'm letting my bf and my family down. I end up rescheduling my parent's doctor's appointments because I just won't be up to it that day. Then I hate myself for it, which makes everything worse. I want to share some positive things here, though instead of just commiserating. Being outside isn't always doable, many days I dont leave the house, but the fresh air does help, and now that spring is here, I find that just sitting in the sun can do wonders. If you're able to do any kind of meditation, or creative visualization or relaxation techniques, that can give your brain something to chew on besides negative rumination. I find that being aware of my thinking is really important. Maybe I'm worrying about something I have no control over, so when I realise that,
I do my best to make myself switch gears mentally and sometimes physically as well. Sometimes just getting up and getting a drink of water can help you start bgg thinking about something else. And they say that repeated affirmations can really create new neural pathways in the brain. The more we do things to combat all our negative thoughts, the easier it gets, and I really have found this to be true! I have found that music can have a huge effect on my mood, and have to remember to use it. I think pets can be a really big help too! I dont know if any of this has helped. But like Larry said, it's important to just remember that you are not alone, and that you ARE NOT a bad person, you just struggle with a debilitating illness, and you can't judge yourself based on that. We're all in this together. I'm glad we're here for each other. I don't know if we're allowed to share personal info? But my email is molliemegan@gmail.com if anyone wants to reach out. I might not be able to much with my life, but if there's anything I can do to help someone else who struggles with their mental health, I'll be glad to do it. 🙃

I am truly fortunate to have lived a life that has been so free from catastrophe and heart ache. We are both retired now and free from the job responsibilities. That and we’ve been married 40 yrs this December. This makes my depression all the more mysterious. It just happened. Like all of you I am experiencing all of the effects without any of the causes that others have experienced. It just happened and we don’t know why. I am using the helps like using the SAD light for an hour a day regularly, walking to get the exercise and benefit of sunlight and taking the meds. But this depression still won’t let up. Can anyone help me understand what causes us to suffer like this. Maybe Merry can weigh in with some understanding.

Hello - I will try to give you some insight to the neuropsych tests that I gave taken several times.
It normally takes me 2,5 hours. I think they allot up to 4 hours to complete. You are in a room with a nurse that guides you thorugh the testing, reading the questions and explaining what to do and give examples on what they are asking you to do. This is great as some of us have trouble following directions. They tests are actually a battery of smaller tests - memory recall ( a slew of tests), numbers, comprehension, reasoning, recreating objects with blocks plus more.
Depending on what they deem necessary - you might have the same tests, more or less tests. That will be dictated on your symptoms and issues.
The tests the are listed on my profile are:
They use the dementia rating scale-2 (DRS-2). Wechsler adult intelligence scale IV subsets: wechsler test of Premorbid functioning: California verbal learning test II short form; wechsler memory scale - IV; logical memory sub test; incomplete letters from the VOSP; Benton judgment of line orientation; noise pareidolia test; trail marking test; strop color-word interference test ; frontal assessment battery; boston naming test; controlled oral word association test; category fluency test; and beck depression inventory II (BDI-2).
That is from my last result. That is as specific as I can get.
It’s an overall good experience. It can be a bit frustrating on some of the tests to see the deficits - the nurse tries to be calming which helps.
I would highly recommend at least getting a baseline for comparison to future tests.

In my situation - we do it annually - of course last year was not very friendly fo this type of testing.

I really hope this helps.

You are on a good path in finding a hobby or passion to follow. It really helps to give a sense of accomplishment and feel better about yourself. After a while - you will be doing ukulele concerts for your family!!!
Me - Ive been a drummer since 5th grade. If I might say so myself - I was pretty good. Now it has changed a lot. I can still do several things - so that is what I focus on focusing on what I used to do and cant now isn’t a good way to live - believe me - I know.
Also -as you mentioned - keeping friendships alive is highly important. That can help to keep your social interaction from turning into no interaction.
This will also help with communication.

This is a multifaceted thing we live with. There is not a simple answer. Everyday - look for a new avenue - a new outlet for some happiness and joy.

For me - my faith is one of the main things that helps me every day.

Peace
Larry

I can totally relate to what you re saying. I had many of the same experiences.
I got to the point where I would not leave my room unless I absolutely had to. I stopped going to work - i just couldn’t face people. I didnt want to be around others. I was building a wall with me inside of it.
I was able to find a good psychologist at Mayo in Jacksonville who has helped. Because of other stuf I have going on - I am VERY suspect I’ve to side effects of meds. I cant take certain classes of drugs.
That can be a very important thing to consider. I tried a med that zombies me out. If that happens - tell the doc right away. Dont keep taking it without the docs input. Wen some of the drugs they try ot give us to help can often do the opposite.
This might make the difference to eventually finding something that works or giving up on anything that will help.

Thanks for letting me ramble.

Peace
Larry

Wow! That's overwhelming me just reading the list! I couldn't handle the real thing, I think. Was this all to get a PD diagnosis?

It’s really not that bad - you can take breaks as needed. Overall it be frustrating when you know you are strugggling on a part of it.
These tests were used to solidify the clinical diagnosis of Lewy Body Dementia and track its progress.

I had the testing also - Neuropsychologist office. Gave me good insight as to what lists I need to use!

Unfortunately, isolating and oversleeping lead to worse outcomes. Your non-processed diet, lower sugar, daily walk outside and household tasks will help immensely. If you are on meds, these things will just make them more effective! Ask Dr to check your B and D vitamin levels. However, no pill can do it all; it takes some effort on your part to improve matters. I also enjoy church or other group activities.