When I visited Dado yesterday, his shaking hand and arm were so much more pronounced. His right leg was always a problem since the beginning, getting "stuck" when he tried to walk. The more I read and research, the more I think he has in a large part, Parkinsonian type dementia. He is extremely quiet and really never talks, though he does cry and sometimes asks me what is wrong with him.
I tried to get him to walk a few steps for exercise. Just two steps in and his arm started jerking and convulsing and he cried horribly. The caregivers said he is having a hard time with eating as he is right handed. (He can eat when it gets to his mouth) Also he simply cannot get to the toilet on time and is urinary incontinent, this is also something I read that said with Parkinsons type what happens.
So many personal changes since his placement a month ago. I am trying to deal with anger toward callous others and to find some peace. This week I spent 4 straight days beautifying the yard, cleaning the shed, washing and waxing car and the lovely unused bicycle. Now I am off on a solo camping trip for two nights, to Spencer Beach Park, about 3 hours from here. (google it if you want to see how pretty it is)
For each of you, I read your trials and your comments, I love you all so and please forgive me if I have not been commenting much. Just feeling a bit strange and out of body. Doing ok though.
so sorry to hear about your Dado coco. they tend to have some dramatic changes in short time frames dont they? maybe this new shaking is a side effect from meds. its a vicious cycle for sure, not knowing if the meds are the cause, as they help him to stay calm. but most of the power meds have some very nasty side effects that can crop up even after long term. i know it breaks your heart to see him like this. maybe a call to your nurse and see what she suggests? your out door stay sounds divine. enjoy to the max and let your heart rest for a bit.
Is he on seroquel? That can cause parkinson type symptoms. My husband has a small hand tremor from it but not bad enough that the doctor and I think we should stop the med.
My wife also showed a parkinson type sympton on one side. I thought the trigger there was risperidone. Also we discussed it and agreed not to stop the med.
Good to hear from you dear Coco ♥ It has to be so difficult experiencing all of the changes. It makes one feel helpless. Have you spoken with his doctor about the shaking? Though I do agree it can often times be from medication, it is also true that many people have both Alzheimer's and another condition, such as Parkinsonism.
I did look up Spencer Beach Park, gorgeous!! I hope you find some peace and comfort. ((hugs))
I'm hoping Coco reads our comments when she returns. Coco...and others: If your dh was in Vietnam and has this shaking, etc. things that could be associated with Parkinsons run don't walk to a VA medical center and apply for benefits. This is one of the conditions on the Agent Orange list...and it is considered a presumptive condition...this means they don't have to find the exact cause...it will be assumed it is due to exposure to Agent Orange. Also...prostate cancer is on the list and heart failure.
Anyone that had a spouse who was in Vietnam should just "goggle" Exposure to Agent Orange condition....and there are a number of places they direct you to so you can get the information you might need.
Yes thanks to all of your for your comments. He is on seroquel, however he had shaky legs well before he started taking that. However I did talk to the nurse from the VA about it, and they are coming out Monday to see him. I have a concern, that, if it is some type of Parkinsons, I read that Anti Psychotics are a really bad thing to give them, and I will bring this up. It helps him immensely with the agitation, but, if it is harming him hopefully there will be something else.
It is so awful to see him, I can look in his eyes and as he says, what is wrong with me, it is like he is trapped in a withering body and brain. Now that we have transitioned and I do get rest at home, I can handle things somewhat better. Yet, I know, there is alot more to come, and it is not pretty.
I will also insist on the Agent Orange thing being addressed. You know, I tried to make an appt. for him last year, and never heard back. I think some insisting may be in order, especially now with the tremors.
I thought this would be a good thread to update his condition. It is deteriorating rapidly. This week I noticed that his feet are bright purple, due to lack of circulation. The caregivers do elevate his legs and massage them. When I rub them within 20 seconds the purple goes away.
His right arm that shakes the most, is getting way thinner than his left, and even the left is getting small. He looks like he has lost a little weight.
And, yesterday, he had a bit of a violent fit when I took him for a short ride. As it is so hard to get him in the car, and out, visits will now be limited to my visiting him at the home.
He yelled and yelled in the car with a growling angry voice, he looked like he was ready to strike out. This is unusual. When I got him back to the home, we noticed that he had pooped in his pants. I suspect this is what made him yell, poor dear man. Either way, he is changing rapidly..
And I learn, not to ask questions, to just stroke his face and say kind words.
It is so hard. Jim would yell and do that when I couldn't get him out of the bed to go pee. He never was incontinent and he would just yell..."got to pee...got to pee....Please...got to pee". It took all I had to keep from crying when he would do that. He didn't want to pee in the diapers he had on, but when I was alone I couldn't get him out of the bed and even if I did he couldn't stand. Like you I would stroke his head and face and then he would finally calm down.
So hard Coco...we are going thru the same things. Totally incontinate now, shaking, and having trouble walking, cannot get his right leg to move. I can see he is trying so hard to co-ordinate his brain with his leg, but it doesn't work. Dh had a fall yesterday, first one....everyday I see him declining more and more. Has lost so much weight, no muscle in arms, feet swollen. I'm not sure if he really knows me anymore, just a blank look in his eyes.
Just so sad, I go home and can't stop thinking about how he is and was before all this.
Coco & Julia, I am right there with you. My DH is also declining fast. He had bronchitis 2 weeks ago & got so weak he is now in a wheelchair. He has fallen a few times. He talks but doesn't make any sense. He needs help eating so usually one of the aids will feed him. I try to go at lunch time or dinner time & then I feed him.
Coco, I also sit & stroke his face. I tell him that I love him & every once in a while he says it back to me.
Julia, my DH is also starting to shake, not much, but I know it will probably get worse. He also has that blank look, more so everyday. I try not to think about how he is now, but then something will remind me of how he WAS & then I cry.
How can you tell if the shaking is Parkinsons or just working off excess energy? My DH has a "tremor" of his right arm but seems to stop it if you mention something to him about it. He already is 100% Priority One AO disabled..but his paper work said it could be added to if there are more things yet undiagnosed. How do we tell the difference?
I think you need a motion specialist Neurologist. Shaking can be from a number of causes. It can be Parkinsons but dementias can cause Parkinsonian symptoms. And the shaking could be a side affect of medication. If this could increase his benefits it could be worth looking into. I don't know about Alz but I've read that Parkinson's medications are bad for people with FTD.
HI Mimi. You know, what he really has, is Parkinsonian type "symptoms" He was also diagnosed with possible Lewy Bodies, and personally, when I did all the research, he fits that to a t. Now, he shakes, but is not as rigid as true Parkinsons.
Whatever it is for sure, Parkinsons was listed on his diagnosis, and as that is a one of the diseases considered in Agent Orange prerequisite, I am glad they put that on his report.
I watched a few videos on Lewy Body symptoms and those people moved just like him. I do believe, he has true Alzheimers along with that.