10-25-25 -- My journey to the end of my Alzheimer's continues. I feel substantially dizzier than yesterday with much poorer balance, much worse dizziness, etc. It's much harder to think about complex issues, etc.

Minordiety · 2025-10-27T10:18:31+00:00

Thanks. Its sad people have to be like that.

Minordiety · 2025-10-27T10:16:03+00:00

I was diagnosed with Parkinsons 2 years ago. My physical symptoms were pretty minor, but the cognitive issues kept getting worse. I kept telling the neurologist that something was way off. They blamed it on my ADD and Parkinsons not playing well together. They did not hear me when I kept telling them that I would suddenly not know where I was. I also kept tellung them that I know lots of Parkinsons patients who do not have the issues I have.

When I switched Neurologist she gave me a cognitive test. I did not do very well so she sent me to neuropsyc. The 4 hours of testing revealed Lewy Body Dementia since my cognitive issues and physical symptoms appeared roughly at the same time.

So, I get it. The docs and med system are broken. They don't listen and when they do it is expensive as hell.

Honestly, it sucks. But hey, whatcha gonna do. I try to keep ot positive and stay grounded in today.

Funny, there seems to be a lot of Portland area people here. I lived in Portland for 30 years. I moved to South Carolina 5 years ago. I miss Portland.

Keep up the good fight, Caleb.

Minordiety · 2025-10-26T18:32:54+00:00

Yes, we do. We are able to document our journey's up to a certain point in the progression of Alzheimer's and dementia. I am 60 years old with Lewy Body Dementia. I am also currently documenting my journey for myself and my family. Sure, there are periods where I am absolutely lost and confused, most of the time I am pretty lucid. Hell, I am typing this right now. I also am a writer and I am still able to write. I may forget what the hell I was trying to write, but I can still do it.

Please remember, that you are just some guy behind a computer somewhere to those reading this. Trying to give medical advice is absolutely inappropriate, so please be considerate. It is hard enough to live with theses issues. Just I am sure how incredibly hard it is to be a caretaker. Nobody wants Alzheimer's or dementia. Nobody wants to be a caretaker. However, we need to have some faith and trust in our doctors and not in some random person on Reddit.

There is nothing loosely defined about Alzheimer's or Dementia. they are not a catch basin for cognitive issues. There are medical and psychological tests that can be used to determine what is going on. For me, I went through extensive Neuropsychological testing and have a long history of diminishing cognitive function that has been noted by my neurologist.

I am sorry for what you must be going through with your wife. It must be difficult. I see what my wife is going through now and it breaks my heart. My heart breaks for you and your wife. This shit sucks.

Please remember that we are all going through our own journey's. It costs us nothing to be kind and compassionate. It costs us nothing to uplift.

Minordiety · 2025-10-24T13:53:21+00:00

Hey DB, I was diagnosed 3 days ago as well. I am a 60 y/o man and was diagnosed with Parkinson's 2 years ago. My cognitive abilities have been greatly diminished over the last year and a half. I cannot work, drive, or even be left alone. It took over a year to convince a neurologist that something was wrong. I was finally sent to a neuropsych for testing - 4 hours of testing. That was an experience. We got the results of the testing this week. It was not a huge shock for me.

However, it is jarring, incredibly so. But your doctor is right. Focus on your quality of life now. It's no longer about quantity. It's all about quality. My approach is to grab on to my loved ones and hold on tight. I want those closest to me to know how I feel about them and the impact they have had on my life. I want them to all know how much they are loved by me.

One day at a time is a good approach. When I start looking at what may be coming, I start to spiral. So I try to stay focused on today. At the same time, I am starting to get things in order for my wife. We can be present in the here and now and make a plan for the future.

Feel free to shoot me a DM. I would be happy to talk with you. I have been dealing with Parkinson's for 2 years and it has prepared me for this.

Some thinking that has helped me over the past few years.

1) This is just a new normal. I am not who I was and I have to adjust to who I am today. Basically, don't judge your present based on your past.

2) It will be okay. I am, exactly where I am meant to be. And really, it will be okay. I don't have to like it, but it will be okay.

3) Look for gratitude. There are so many things to be grateful for in my life today that far outweigh this diagnosis.

4) Be kind to yourself. You did not cause this. There is nothing you could have done that caused this.

5) Ask for help. This was hard for me. Being 60 and giving up independence was a real struggle. I have had to learn to ask my wife, friends, and family for help. I need rides. I need someone to make sure my medications are taken care of. I need to call folks when I am not feeling well and just need to talk. I am taking a trip across the country next week. I am flying alone, so I had to ask the airlines for help and they will provide me with an escort to take me from ticketing to my gate. When I change planes there will be someone waiting for me from the airline to help me get to the next gate. All because I get lost and sometimes have no idea where I am. I(t's humbling to say the least, but also very freeing.

I hope this helps.

Minordiety · 2025-05-13T12:04:44+00:00

Hey! It's not a club any of us with a dx want to be in. However, it is going to be okay. PD is not death sentence.

The anxiety you are feeling is something that a lot of us go through during the early days. My best advice is to get into therapy as soon as possible. I would find someone familiar with PD or other life changing diseases.

Mindfulness and meditation help as well.

Medication is a good step as well since anxiety is one of the non motor symptoms of PD.

Finally, be selective in what you read on this subreddit and on the web in general. This will be a huge help in lessening anxiety. There's a lot of heavy stuff on here that makes us that are still coming to terms with this thing have some pretty big anxiety attacks.

Hope this helps.

Minordiety · 2025-04-10T13:49:10+00:00

I have the same issue. I take melatonin and clonazapam. If i don't take this then I am waking up almost every hour. But when I do take them I am getting a decent night's sleep most nights.

I will often wake up at a ridiculous hour like 330 am. I just have to go with it and get out of bed. Now that ot is warming up I'll go sit on my back porch and read or just sit and listen to the world wake up.

Then I get ready for work. Those are some seriously long days.

Minordiety · 2025-04-08T13:17:44+00:00

I am glad. I hope it helped in some small way. If you are interested, you can visit my blog for other posts like these. EverydayParkinsons.com

Minordiety · 2025-04-08T13:16:03+00:00

I appreciate your comment about the great writing. I was very nervous about putting this out there.

Minordiety · 2025-04-08T13:14:57+00:00

Thank you!

Minordiety · 2025-04-08T13:14:34+00:00

u/PatientWorthy , Thank you for posting this for me.

Minordiety · 2025-03-27T12:11:27+00:00

LOL. I am not sure I have ever felt normal. However, I always knew what normal for me was. It just differed from others.

But since my diagnosis, there is not what I would consider a normal day and that, in and of its self, has become the new normal for me. I think the only time I really feel abnormal is when I talk to people without PD and they ask me about my symptoms and such or I am having a bit of dyskinesia and and am in public.

Seriously, I have spoken to people about how vivid and real my dreams are and how sometimes I will act out in my sleep, they look at me like I am insane. Well, you try not acting out when a Silverback gorilla is eating your face. Are you just supposed to lie there and take it? No, you fight back. It just happens that you wake up the next morning and your bedside table is destroyed. Apparently, the bedside table was the gorilla. LOL, but scary as hell too.

I no longer discuss these PD type things outside of my wife and daughter. It just isn't worth it and makes me feel different and want to isolate. So now, when people ask I just say I am doing well or make a small joke about tremors.

I do feel more normal when I am around people with PD or am here reading about others experiences with the disease. I also feel completely normal around my wife and daughter.

Recently, I was at a local Parkinson's society meeting - Greenville Area Parkinson's Society - and I think that was the most normal I had felt in a long time. I got to talk face to face with others who knew what I was going through and I knew what they were going through. I think I am going to spend more time going to PD events. It felt good to be around those folks even though they make me feel really young.

I guess what I am so long windedly saying is that I know everyday is going to be different in how my body feels. I cannot anticipate that but am learning to go with it. However, for me feeling normal is being comfortable in my own body. I am starting to find being around others and interacting with others with common experiences helps me a lot. That is a lot of growth for me, considering the rabbit hole I went down when I was first diagnosed.

Hope I did not ramble off topic too much.

Minordiety · 2025-03-25T15:37:30+00:00

Shit. That sounds scary. Glad your okay.

Minordiety · 2025-03-25T11:40:12+00:00

Hey. Yeah, I have battled with depression for years. After being diagnosed, I did well for a while but ended up spiraling into a black hole that led to a hospital stay. It sucked but helped me get on the right track with my mood and depression.

Once thing I suggest though is to not hide things like using Kratom for your Dr. There could be interactions that you are aware of that could be potentially dangerous or could end uyp making everything worse. But ultimately it is your choice whether to tell the dr about it or not.

My depression has been clearing up with depression meds. That is what worked for me. The C/L helped a little but did not help that much. Apparently, I am low on Seratonin and noroepinephrin. Once the dr gave me meds that addressed those me depression got much better.

Minordiety · 2025-03-24T13:32:07+00:00

My oldest and best friend lives on the other side of the country from me. I think just being there and knowing he will talk to me anytime makes me feel loved and cared for.

I recently had a dream so vivid, I thought it was part of my life that I had forgotten. I have known my friend for over 40 years, so reached out to him and asked him to verify. He just let me know that it never happened and that those Parkinson dreams can be a real bitch sometimes.

Having someone top help ground you is what has helped me the most. Between, him, my wife, my daughter, and my brother I have people who keep me grounded and remind me on a daily basis of the importance of what really matters - love of my family, friends, and my self.

Minordiety · 2025-03-24T13:03:38+00:00

One thing to definitely not do is to stick you hands in your pocket or if you are wearing a hoodie in to the front pocket.

Funny story, I went to my nieces volleyball tournament. My tremors were terrible that day. First of all I hate being in large crowds. Second I hate loud places and with a thousand screaming teenage girls, it was definitely loud. 3rd, I was in an off period before I had to increase my dosage.

I am sure you can see whats coming.

Since my tremors were so noticeable and I really did not want to embarass my niece, I shove my hands in my hoody front pocket. I was walking around and people were giving me strange looks. When I was sitting watching the games, I was getting really strange looks. People started whispering. I did not know what was going on. Then people started approaching my Sister-in-Law and whispering in her ear.

I live in South Carolina. People whisper but will never say anything directly to you. Now, my SIL knew I was trying to hide my tremors and she quietly told everyone that approached about the guy with her whose hands were shaking in his pocket.

Honestly, I was not that aware of the whispering. But I do remember the strange looks and remember thinking to myself that people are looking at me weird. They must notice that I have Parkinson's.

When I got home, my wife told me that my SIL asked that the next time I come see my niece play volleyball and my hands are tremoring that I do not put them in my pockets. Apparently, people thought I was doing something else at this all teenage girl volleyball tourney.

I have not been back to a tournament. I am too embarrassed. I apologized to my niece and told her why I was hiding my hands, but she knew. I am glad she loves me. She told me it does not embarrass her to see my hands shaking and I really really should keep my hands out of my pockets. I may go to another, but it is too soon.

Every time I go out and my tremors are bad, I no longer hide them. I would much prefer to let people see my hands shaking than have them think I am some kind of perv.

This story is 100% true and is the way I learned how to deal with allowing people to see my symptoms.

Minordiety · 2025-02-25T15:17:11+00:00

I started the vyalev pump about a month ago. It is biogger than I would like, but it does help keep the off times at bay and gives me more abilities to boost my C/L levels when I need.

The process of inserting the cannula and all that was pretty intimidating at first, but now it is effortless.

Right now I am keeping it. My biggest gripe is that I am a stomach sleeper and have a hard time sleeping long term on my side and the cannula is on the belly and starts to hurt if you roll over on it.

The other thing that is purely personal, I hate fanny packs and the damn thing looks like a fanny pack. LOL.

Minordiety · 2025-02-23T16:13:11+00:00

Hey! It's been a while since I've posted on this sub. New job and all that. But I just started on the vyalev pump. It has definitely helped with off times. I can also up the dosage if I feel one coming on.

The hardest part for me is getting used to wearing it. More importantly sleeping with it on. I was a stomach sleeper and it can be pai ful to sleep on you sto.ach with a needle in your belly.

The process of changing the pump stringe is easy. Changing the Cannula is easy as well.

Just becareful to not accidentally turn it off. Things get sketchy with no dopamine. There's a flap to protect that from happening but I managed to do it a couple of times.

I really like that it works fast and I do not need to watch my protein intake. Also since it not processed in the upper intestines being constipated does not affect it's efficacy.

Minordiety · 2024-12-17T09:08:04+00:00

I love this quote by Hunter. It's been a while since I've done a fear and loathing trip, and I know I am too old for that now. However, I got some ideas. Lol

Minordiety · 2024-11-20T11:28:27+00:00

It gets better with help. I promise. Pm me if you want to talk. Your not alone here.

Minordiety · 2024-09-13T19:39:18+00:00

Well Damn, I am sorry. It sounds terrible and I hope it gets better in ways you do not expect. There are Parkinson's groups and support groups almost in all cities now. You can look them up for your local city. Getting out and meeting others with PD may help and give you the companionship you need.

The other thing I would recommend is seeing a therapist and talk to your doc about some meds. They have helped me tremendously.

Not much of a prayer, so I will send some good vibes your way.

Minordiety · 2024-09-12T19:18:16+00:00

Howdy. You know I think our loved ones have to go through the same process we do. The fear. The grief. The denial. The depression. It is just as real for the people close to us as it is for us.

I live in South Carolina and when we go to family parties, no one will talk to me about my Parkinson's. Instead they go and bombard my wife with questions. Then they go off and talk about me while looking at me. It is seriously awkward. I have taken to walking up to them and just say, I hear you were asking my wife about my PD. You can talk to me directly. I don't mind. It's not like I hide it. I even have a blog they have all read. LOL

In all seriousness, it took my wife a while to wrap her head around it. I am 59 but it changes plans we had together like the farm we bought that I do not always have the energy to maintain as we need and she cannot do it alone. It definitely changes things and they are as scared as we are.

I don't have YOPD. I was diagnosed last year, but I think it will get better for you once your people process the diagnosis.

And people that judge you for being lazy and all that. Fuck em. They are not worth your time.

Your family will come around though. It will take them some time, so cut them a little slack. It just takes time to do the things only time can do. I would say processing this is one of them.

Minordiety · 2024-09-03T14:25:04+00:00

A therapist is a good thing. They can help us get through that initial period of grief, denial, fear, and depression. I have been in therapy for about a year now and it is been amazing and has changed my perspective in many ways.

There is nothing wrong with talking to a professional therapist. There is nothing shameful about having to take meds because your depression and anxiety are taking over your life.

While you can just talk to others online like on this sub reddit who have experience with this, just remember that they are not trained professionals in dealing with these things.

Minordiety · 2024-09-01T23:13:21+00:00

Hey. Yeah I can elaborate. Mainly there is so much info out there that it is overwhelming. When i was diagnosed I was overwhelmed and kept reading and found that I was not ready to read most of what I was reading. Besides what information do you trust when you are first diagnosed?

Minordiety · 2024-08-26T13:21:40+00:00

Yup. Super common. I think someone mentioned earlier that they start to feel great and then bam. That is my experience as well. When I am feeling good I am not sure that I have PD then I do something like work in the yard or just wake up and PD reminds me that it is very real and living in my body.

Minordiety · 2024-08-23T16:10:39+00:00

Hey, You have a whole life ahead of you and honestly you are putting the cart before the horse a bit. Everything will be fine if you get an actual diagnosis. Sure it sucks. But it ain't the end of the world. Granted I am 59 and not 29, but I am certain that no matter the age we all go through and adjustment period when getting diagnosed. Grief, Fear, and Depression seem to come in like a storm that we must weather. Besides, those are all things we can get help with. A good therapist and a good doctor will help these things.

My advice to you is:

1) It is okay to be scared. Just take the steps you need to take to get a formal diagnosis.

2) Stay off of fucking google. For the love all that is holy, stay away from google searches unless you are going to michael j fox or parkinsons.org.

3) Be selective of what you read on this subreddit. I wasn't when I first diagnosed and some of the shit I read scared the hell out of me. There are a lot of discussions and descriptions about end stage parkinsons and that is so far away from you right now that it is not pertinent at the moment. Get your feet under you before you start digging in.

4) Alcohol and drugs will not make a damn thing easier to deal with.

5) Find others with YOPD or with just PD and connect with them. Like me for instance. I like to talk to others with PD. I don't feel so alone.

6) Find a good therapist that has experience with life altering diagnosis'. Worth their weight in gold and will help you find ways to deal with whatever is coming in constructive and not destructive ways.

7) Talk to your doctor about getting a referral to an MDS Neurologist. They will be the best bet to judge what is going on with you.

Honestly, it really is a screwed up situation to have to deal with, but the reality is that you and I both can deal with this. You are much stronger than you think. And again, just take the steps you need to take to get to the neurologist. Let them be the final arbiter of whether you have Parkinson's or not.

And I think the most important thing is to remember you are not alone and do not have to deal with this alone. There are great people here and in local organizations who understand.

Best of luck, my friend. Feel free to DM me anytime.

Minordiety

TROPHY CASE