Confusion ....

[Althea-c]

My Barry is confused most of the time.

His dreams and reality are merged.

His speech is muddled which makes it difficult to understand and then he makes sense for a couple of words.

I spend a lot of time with my ear to his mouth to hear what he needs. 😂😂

He doesn't understand thumbs up or down or flash cards.

He won't let the carer do much for him and calls me constantly.

I think I wrote a similar post a few weeks ago so I don't expect a miracle answer

I'm just letting of steam ..... its all so frustrating.

[EricaE]

I have no answers but I do know what the need to let off steam feels like and that this is the place to do it. So many people here have given me support when I needed it - yourself included. I wish I could offer you the same, I wish I had answers. I'm thinking of you and your Barry. With love, E.

[Althea-c in reply to EricaE]

Dear Erica, your are so kind. Much appreciated. Althea 💛🙏

[Boyce3600]

You are describing my husband to a T, but neuro says no to PSP and yes to Lew Body Dementia. He looks downward 24 hrs a day. It started in 2013 with a small bowel obstruction and a little depression or withdrawn symptoms, then increased to more depression and to blank affect . Had a surgery in 2015 and unclear thinking began almost immediately after that. Motor symptoms have been noticeable since about 2014. Sinemet gave him the confusion and impaired thinking, took for about 8 weeks, maybe some little motor improvement during that time but the mental effects were far worse. He got off of it and has tried to use exercise and supplements since then, which was 2016. He has falen three major times and several minor times... the last was a week ago today falling straight backwards onto his back. luckily it was just a contusion. He began Exelon 3 weeks ago and I saw immediate Improvement and now it's totally opposite and he's reverted to the way he was before. I would be open to a private conversation or phone call with you if so if you would be open to that please let me know

[Althea-c in reply to Boyce3600]

Dear Boyce. I would love to hear from you and learn more about the Exelon. We are in South Africa I am hoping they have it here.

My email is [e-mail].

Best regards, Althea

[Marie_14]

Althea have you had a second opinion? Interesting that someone else mentions Lewey Body Dementia? It is strange that Barry doesn't understand anything. Can you contact his Neurologist and say you are very concerned about him?

Marie x

[Althea-c in reply to Marie_14]

Marie, Barry has had several MRI scans over the past 5 years. The last was Nov 2016 which very clearly showed the "Humming Bird " pattern.

He was originally diagnosed with basle ganglia disorder, then Parkinson's. 💛🙏

[Marie_14 in reply to Althea-c]

Althea sorry I misunderstood! Now I see where the problem is. Poor Barry and poor you! I remember the dressing gown period. Not exactly going to cheer you up?

I think the idea of getting dressed and going for some pie is a good one! So make yourself feel real again. I hope someone can give you a break to do that, at least one day this week!

Hugs to you.

Marie x

[rriddle in reply to Althea-c]

If the hummingbird sign were specific to PSP, it would be part of the diagnostic criteria, which it's not. That being said, there is a chance (albeit small) that your husband has both PSP and Lewy body dementia. LBD does make sense given your husband's symptoms. The generic name for Exelon is rivastigmine.

[Althea-c in reply to rriddle]

Thank you 💛🙏

[Althea-c in reply to Marie_14]

Marie, Barry understands everything he hears but can't verbalize. He can't do thumbs up or down as his hands are rigged and closed most of the time. Much love 💛🙏

[abirke]

That's what were hear for, Althea....it is frustrating but you are not alone....

[Althea-c in reply to abirke]

abirke, you are a dear woman. Thank you 💛🙏

[abirke in reply to Althea-c]

Does that make me a doe? hahahaha

[Althea-c in reply to abirke]

Hysterical ... 😂😂😂😂😂

[Yvonneandgeorge]

George is the same, feeling so disheartened, so stressed, then feel bed for feeling stressed and getting upset!!!!! Sending you a big hug, stay strong xxx Yvonne xxxx

[Althea-c in reply to Yvonneandgeorge]

The stress is killing me. I think of very little else other than Barry and PSP

I have been sitting in my dressing gown for two months. 😪😪

[Althea-c in reply to Althea-c]

Big hug for George

[Yvonneandgeorge in reply to Althea-c]

Get dressed and get yourself out for a coffee,

[abirke in reply to Althea-c]

Oh how I know that crappy feeling.....I must admit i have started getting dressed but i dont' care about putting on makeup...which was just a bit of eyeliner ....I would need a facelift before makeup could kick in....but we have a beautiful library actually won being the most energy conscious and 'green' library in US! so I have library and church to get dressed for ....I went to some gospel singing place the other day,,,and It was hard for me to be there but once I allowed myself to enjoy it, I found myself sometimes immersed in the words applying them to my husband as they sang about there loved ones going on before them like Jesus did etc....it really affected me in a good way....well I say that to say this....

Get out of that danged dress and go buy you a piece of pie and take it to a park that has laughing little children in it and enjoy both....do it now....are you doing it...ok well it's the middle of the night where you are right now....but tomorrow is Labor Day ...tell your children you are supporting the US today and take Monday off and go have a piece of pie in the park! Take your grandkids....!!!

hugs and pie, friend

AVB

[Althea-c in reply to abirke]

O M Hat abirke, I do love the way you think. Yes I'll buy a piece of pie first thing tomorrow and get out of my dressing gown.

Much love 💛🙏

[abirke in reply to Althea-c]

[Althea-c in reply to abirke]

💛🙏

[Yvonneandgeorge in reply to abirke]

Here here, listen to this beautiful lady xxxx

[Althea-c in reply to Yvonneandgeorge]

💛🙏

[easterncedar in reply to Yvonneandgeorge]

Hugs to you, Yvonne. You have been such a stalwart fighter for so long. The weak moments don't amount to anything compared to all the hours and months and years of persevering love and care. Be kind to yourself. Hang on. Love, Ec

[Althea-c in reply to easterncedar]

💛🙏

[Yvonneandgeorge in reply to easterncedar]

Thank you lovely lady for all

Your support xxxx

[abirke in reply to easterncedar]

Well said Ec

[Spiralsparkle]

Sending you some hugs xxx

[Althea-c in reply to Spiralsparkle]

💛🙏

[Hidden]

When Larry comes out with some strange statement I know he's tired. On waking he will sometimes make odd declarations. I don't correct him unless he is insistent I do something. When fully awake he knows his thought wasn't rational. At least to this date. At some point I expect the delusion will not go away.

[easterncedar in reply to Hidden]

My guy often started the day confused about where he was, but thinking he was traveling for work and I was a coworker. He was such a dedicated man. He generally went along with whatever I needed him to do until he came into the present. It never got worse than that. FWIW.

[Althea-c in reply to easterncedar]

Looking back at all you have gone through I suppose his ability to let you take control is a tiny blessing.

Not my Barry... he is the ultimate control freak. Sending my love to you dear eastern. 💛🙏

[abirke in reply to easterncedar]

Oh my goodness, I just told someone that B did not have hallucinations but he did sleep walk . I had to ask him where he was right now to get him back to reality, and back to bed.....is sleep walking a hallucination?

AVB

I'm glad to "hear' your voice ec..

[Althea-c in reply to Hidden]

I pray that Larry stays as he is and is able to know his thoughts were irrational. The delusion faze is horrible. Wishing you strength. Much love Althea 💛🙏

[Hidden in reply to Althea-c]

When he is awake fully he knows what he said made no sense. From what I read dementia isn't a big issue with PSP.

[JantheNana]

I would like to add a second and third admonition to those already expressed-get out and do something enjoyable Before Don died I thought "if only I could get out of the house and do something". Now I am free to do that but still don't know WHAT to do.I am going shopping today with a friend but friends are few and far between.They tend to get lost by the wayside while we go through the hell of being a carer for 24hrs a day.

I am praying for you everyday and for all those suffering from this terrible disease. Janet

[Althea-c in reply to JantheNana]

Dear Janet, the dilemma of getting life back on track is something I haven't had to consider yet. It must be so hard for you especially when you have to start friendships again.

With all you have suffered ... you won't be the same again but eventually your true friends will be there for you. Thank you for your prayers. Althea 💛🙏

[abirke in reply to JantheNana]

so true Janet, so true....I have mustered up the courage to get hired for a job...however I will turn it down as it will take the most important time of the day , that with my family...$14 bucks an hour isn't worth it....I may rue the day I said that but for today I will hug my foster grandson....

thank you for your encouragement

AVB

[Althea-c in reply to abirke]

There is nothing more rewarding than hugging a grandchild. Enjoy. 💛🙏

[abirke in reply to Althea-c]

absolutely. Today we are going to the skateboard park where he will try his skills at the extreme inclines and declines and have the same kind of...fun! like a rollercoaster scared to death when on it and can't wait for the next ride when off it!.....

I just sit on the side and watch

AVB

[Althea-c in reply to abirke]

Enjoy your precious day with him 😀

[Cuttercat]

Barry, like Charles, tries but the frustration is terrible. I have to try to help like you do but sometimes I get angry and frustrated too. Blessings and stay strong.

Cuttercat

[abirke in reply to Cuttercat]

punching bag outside away from everyone.....deep healing breaths and smack that PSP right in the you name it.....

AVB

[Althea-c in reply to Cuttercat]

Much strength and love to you. Althea 💛🙏

[Althea-c]

Dear Cuttercat, our men seem to be at a similar stage. I've been reading through your previous posts.

Sending love, prayers and big hugs to both you and Charles.

Althea 💛🙏