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.
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 It started in 2013 with a small bowel obstruction and a little depression or withdrawn symptoms, then increased to more depression and to blank affect .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 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?
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!
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.
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 💛🙏
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
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 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
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.
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.
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?
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 💛🙏
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
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 💛🙏
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....
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!.....
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.
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Confused
Confused
Aggression with confusion...
