Parkinsons with Dementia

Has any one else got a family member that you think may be getting dementia but has not been diagnosed. I feel that my husband is showing several symptoms and it is more worrying than the actualo Parkinsons, which in his case is mildish. It can't be the meds because he doesn't take any.

22 Replies

  • Maybe the time for drugs has come.

    Please, please don’t leave starting prescription meds until you are seriously incapacitated. Even with the excellent support of my neuro, physio, GP etc in using alternative/complementary approaches I deteriorated over 2 yrs until I was virtually immobile.. We are each unique & respond differently to therapies, treatments & drugs. Our preference for ‘natural/homeopathic/complementary/alternatives’ can lead us astray if we’re not careful. I think cognitive problems are a feature of PD but they can be treated. There was a blog recently on this site about losing one's mind. That may be useful.

  • Life is not the way it's supposed to be.. It's the way it is..

    The way we cope with it, is what makes the difference..... xx

  • i do have cognitive issues - short term memory is quite poor and cognitive processing is slow compared to a few years ago - these can be symptoms of PD - might be a good idea to see your neurologist.

  • My husband had been slowing signs before he ws diagnosed. After the meds he got a lot better but now it is getting bad again. It may be time for his Movement Disorder Neuro to re-evaluate his meds.

  • Thank you to everyone who has replied. Today my husband is lucid and watching the news - at night he is up 10/11 times, very confused and can't get into bed etc and has problems with the lo etc. It's like Jekyll and Hyde! Also after he wakes up after a snooze he is very confused but if we sit together for 10 mins or so and have a cup of tea he comes round again.

  • ok I'm so curious why doesn't your husband take any meds? I think sometimes my brother is worse off with his medications. He gets so tired he can't stay awake and is always getting them messed up without some help. How is your husband's parkinsons without meds?

  • Its a long story, so settle down! He was 72 when diagnosed, although as usual he has had it for a while. His tremors etc were not too bad, just his hand and his leg a bit when stressed. The specialist said that sometimes meds gave you hallucinations and we didn't want that and as his physical symptoms were not too bad it was left that we contact the specialist when we were ready or things changed. All went ok for about 9 months but this January, after a cold with a temperature, I noticed that my husband was much worse, but mainly with confusion. Now he walks much more slowly, his left hand is like a claw but still not too bad physically. We have an appointment with the specialist on April 2 and I feel cross that we were left without realising how quickly things could change. Anyway, no point being cross, makes me more wrinkly than I am already! Chins up

  • There was a poll about hallucinations. I had them BEFORE diagnosis, so the meds are not totally to blame for them. I am night and day better with medications, I was very debilitated prior to diagnosis and would be scared to death to go off of them. If things are really stressful, I am still symptomatic, but no where near where I was without meds.

    I too have seen a huge cognitive change in myself over the last 6 months. As a nurse, we were taught to check orientation of people in the hospital, particularly older folks who can get "hospital psychosis". Last week, I could not remember the name of the current Vice President, that was scary.

  • I feel my husband is getting very attached to me - as if he can't do anything without me. Sometimes I notice that he can actually put his own shoes on but if I'm around he sits and lets me do it. Tomorrow is his first day at Day Centre and he is very worried. It is like going to school for the first time - can we all remember that feeling! What is 'hospital psychosis'?

  • Susie01 can I ask what meds you're on?

  • Lynnie1, I no longer participate in this site, but do try to answer questions when i am notified. I now take Azilect once a day and Sinemet 4 times a day. I also take a small dose of Seroquel for sleep.

  • Hospital Psychosis can happen in some older people when they are admitted to the hospital. They may have no history of psychosis, but when placed in a totally new setting, they can become temporarily psychotic.

    I can see how your husband can get attached, for me, there are times that I have to pick up something I dropped even though I know I will get very dizzy, but if someone is around, it is much easier to ask them to pick it up.

    It may be that when he bends down to put his shoes on that it makes him dizzy or disoriented and that is why he would prefer you to do it.

    Most of my shoes do not have backs so I can take them on and off without a problem. Though I do have regular shoes for my walk. I will usually sit on the second stair up on my staircase to put them on so that I am not bending over so much.

    Hope this is helpful for you in understanding some of the ups and downs of PDl.

  • Thanks, Suzie - the shoe thing is a ood idea - normally my husband is sitting on the bed and it is quite a way. We have been to a physio today - first time and he has some exercises to do as he is quite stiff and does not have very good posture. Physio said that perhaps it i time to start meds. He had a good time at the Day Centre and has come home much more animated. I am sure new faces etc must be a boost.

  • One of the early PD symptoms my husband had was 'slowness.' He walked very slowly, & it took him a long time to answer questions. Everything he did was slow. Since you'll be going to the dr. soon, I'll list his other symptoms:

    shivering on the inside

    tremor in his leg (we couldn't see it)

    drool on his pillow

    acting out dreams

    he felt like he was falling forward when he walked

    Amantadine was his first prescription. 75-80% of the above symptoms went away when he started taking it. After a little over a year, he's off amantadine because we thought it was causing him to stay awake 27 hours or more at a time. He still has sleep issues though. About a month after he started amantadine, Azilect was also prescribed for him. I don't know if either of these meds would help your husband.

    also we've been told that PD causes cognitive issues. My husband's memory seems to be getting worse, but it's not too bad yet. None of his PD symptoms are too bad yet.

  • Thankyou P...spouse - our husbands seem to have several of the same issues. I am glad I joined this movement - I don't feel quite so alone. I have made a note of the meds you mentioned - not that I will bring them up when we see the specialist, just for interest, really.

  • FeeBee,

    You might want to bring up the meds when you meet with the doctor. I have taken Azilect 1 mg daily since diagnosis. It is a once a day medication vs. some of the others that have to be taken more often. As long as I am not under stress, it keeps my tremors at a minimum. I still have the cognitive issues, it has not made a change in that, though they also are worse under stress.

    Azilect is very expensive, about $700/month, you would want to know if your insurance covered it. I get mine for free because I do not have insurance and make less than $50,000/yr. The company sends it to my Neuro's office every three months and I go there to pick it up.

    Another thing to keep in mind with Azilect is the dietary restrictions. You have to stay away from certain meats and cheeses. I am vegetarian so it is not a big issue for me. There was a time they thought that Azilect protected the brain cells from further damage, though more recent research does not prove that point.

  • The more one hears about Parkinsons, the more complex and onfusing it gets. Then there is the difference between USA and UK, where we live. It will be interesting to see what we get offered. I can't see my husband wanting to be careful about his diet as well as everything else! He spent his first day at a Day Centre today and the meal is two choices - eat it or don't! Anyway he enjoyed it - he has been in the military all his life so he can eat anything! It is 4.15 in the morning and we could not get him settled so we came down for a cup of tea and a bit of TV.

  • Yes, it does seem that there is a real difference in how PD is treated in the UK and US, it seems that the UK has better care but I may be mistaken. Our healthcare system in the US is broken...

  • I was diagnosed with Parkinson's Disease 2002 and Lewey Body Disease about 2003. I don't know about the LBD but I do have some dementia. I still function quite well, driving, running erands. I just seem to have more anxiety and tremors. Exercise was the key to keeping in relatively good shape. Now that I have dropped of the exercise all symptons are getting significantly worse! I must get back to the exercise!

  • My gran has lewy body dementia and Parkinsons. She knows she has dementia which makes it worse because of the accompanying depression associated with loosing her memory.

  • What symtoms are they my husband just can't do simple things like opening the lock or read simple notes and I repeat things often to him

    I hear what you are saying

  • My husband is 74 and diagnosed in October 15 he takes Madopar and helps with most physical effects but he is quite muddled at times and can't work out things that are right in front of him and I repeat things lots

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