Parkinsons and dementia

[jessica meadows]

Hi, I've just joined TP and rather bewildered by all the info!

My husband Rod now has dementia on top of Parkinsons. Its because of the strong medication he is on. The dementia takes the form of obsessive thoughts which are
overwhelming him. Its all very scary and I dont know where to go for help. The
doctor prescribed a pill which gave him sickness and diarrohea and he is now saying
whatever medicine he has may have the same effect so where do we go from here?
I dont know what to do to help him. I've read some of the other Threads and you all
seem much worse and I am wondering how do you all cope? I think its because this is
a new aspect of Rod's illness that I am frightened of the future. I have been coping
with his Parkinsons OK but this is something else!!

 

[Chuggalug]

I have never dealt with Parkinson's, Jessica, but dementia, in whatever form it takes needs investigating. Have you spoken to your GP about everything you've noticed?

 

[Jinx]

Jessica, so sorry that your husband has both these terrible illnesses. I'm sorry I can't offer any advice really, but I'm sure someone here has had experience of dealing with both aspects. A big virtual hug is all I can manage.


Sent from my iPad using Talking Point

 

[esmeralda]

Hi, I've just joined TP and rather bewildered by all the info!

My husband Rod now has dementia on top of Parkinsons. Its because of the strong medication he is on. The dementia takes the form of obsessive thoughts which are
overwhelming him. Its all very scary and I dont know where to go for help. The
doctor prescribed a pill which gave him sickness and diarrohea and he is now saying
whatever medicine he has may have the same effect so where do we go from here?
I dont know what to do to help him. I've read some of the other Threads and you all
seem much worse and I am wondering how do you all cope? I think its because this is
a new aspect of Rod's illness that I am frightened of the future. I have been coping
with his Parkinsons OK but this is something else!!

Glad you have found this place Jessica, but sorry that you are having a difficult time with your husband. I can't advise you on the medication your husband was prescribed because this isn't something that troubles my OH at the moment, there will hopefully be someone else who can share their experiences though.
I think we all cope one crisis at a time and I'm sure you're just the same, sometimes it seems really hard but then we get through it somehow. It's good to have the support you get on this forum, and it makes all the difference. Love, Es
xxxxxxxxxxxxxxxxxxxxxxxxxxxx

 

[nitram]

If you have not already had a referral for the dementia ask the GP if they can make one.

My wife had Lewy Body Dementia which is associated with Parkinsons, it depends on which part of the brain the Lewy Bodies form. She was under two consultants, a psychiatrist and an adult movement disorders specialist and they worked together on deciding medication as there are many contraindications.

 

[patsy56]

Hi, I've just joined TP and rather bewildered by all the info!

My husband Rod now has dementia on top of Parkinsons. Its because of the strong medication he is on. The dementia takes the form of obsessive thoughts which are
overwhelming him. Its all very scary and I dont know where to go for help. The
doctor prescribed a pill which gave him sickness and diarrohea and he is now saying
whatever medicine he has may have the same effect so where do we go from here?
I dont know what to do to help him. I've read some of the other Threads and you all
seem much worse and I am wondering how do you all cope? I think its because this is
a new aspect of Rod's illness that I am frightened of the future. I have been coping
with his Parkinsons OK but this is something else!!

Oh Jessica, I was going to start something like this, yes B was diagnosed with Parkinson's 3yrs ago but recently he has started to get the dementia.

He forgets we have watched something on TV, and now it is hard for him to swallow. Could we be friends so I have someone to talk too.

 

[jessica meadows]

Oh Jessica, I was going to start something like this, yes B was diagnosed with Parkinson's 3yrs ago but recently he has started to get the dementia.

He forgets we have watched something on TV, and now it is hard for him to swallow. Could we be friends so I have someone to talk too.

Hello, Patsy, Sorry its taken me a while to reply - yes, I'll be your friend. I think we
have a lot in common as Rod was diagnosed 4 years ago with Parkinsons although I had
known long before that there was something wrong. How long has your B had dementia?
With Rod it has only been in the last few months. I could write a lot more but am running
out of space & not sure how to work this website! Take care. Jessica

 

[jessica meadows]

If you have not already had a referral for the dementia ask the GP if they can make one.

My wife had Lewy Body Dementia which is associated with Parkinsons, it depends on which part of the brain the Lewy Bodies form. She was under two consultants, a psychiatrist and an adult movement disorders specialist and they worked together on deciding medication as there are many contraindications.

Thanks for encouragement. Yes R is under a neurologist & a psychiatrist so they may
confer. R is also on anti-depressants as he has had depression for over 40 years. All
these pills create problems as well as helping some things. Life has been tough but
marriage is 'for better & for worse!' Thanks again for your support. Jessica.

 

[jessica meadows]

Glad you have found this place Jessica, but sorry that you are having a difficult time with your husband. I can't advise you on the medication your husband was prescribed because this isn't something that troubles my OH at the moment, there will hopefully be someone else who can share their experiences though.
I think we all cope one crisis at a time and I'm sure you're just the same, sometimes it seems really hard but then we get through it somehow. It's good to have the support you get on this forum, and it makes all the difference. Love, Es
xxxxxxxxxxxxxxxxxxxxxxxxxxxx

Thanks for your support. What you said was very encouraging. I am grateful to everyone for writing to me. Jessica.
there are other people like me out there!

 

[jessica meadows]

I have never dealt with Parkinson's, Jessica, but dementia, in whatever form it takes needs investigating. Have you spoken to your GP about everything you've noticed?

Thank you for responding. Yes, we do see a neurologist but at our last appointment
he seemed puzzled as to what to suggest which left me feeling a bit downhearted.

I am grateful to everyone who has written. Thanks. Jessica.

 

[jessica meadows]

Jessica, so sorry that your husband has both these terrible illnesses. I'm sorry I can't offer any advice really, but I'm sure someone here has had experience of dealing with both aspects. A big virtual hug is all I can manage.


Sent from my iPad using Talking Point

Thank you Jinx for the virtual hug - I can feel it! Jessica x

 

[mabbs]

Hi Jessica
My Hubby has alz and parkinsons plus prostrate cancer, the cancer he has had for years, but the alz and parkinsons was diagnosed 6 months ago, he cant have meds for parkinsons, as they say they will make the az worse, will be interested to read how you are getting on, so please keep posting. Mabbs

 

[jessica meadows]

Hi Jessica
My Hubby has alz and parkinsons plus prostrate cancer, the cancer he has had for years, but the alz and parkinsons was diagnosed 6 months ago, he cant have meds for parkinsons, as they say they will make the az worse, will be interested to read how you are getting on, so please keep posting. Mabbs

Hi Mabbs, Sorry your husband has alzheimers, Parkinsons plus cancer & that he has no medication
for Parkinsons. My husband takes Sinnemet Plus & has been on it for 2 years before
the dementia started. How is your husband managing? Does he have the shakes?
Rod doesnt now because of Sinnemet. Now we have to find out how to deal with the
dementia! All these pills & their side effects ... - and we partners (wives) try our
best to help them & ourselves to cope. Its not easy, is it. Jessica

 

[mabbs]

Hi Mabbs, Sorry your husband has alzheimers, Parkinsons plus cancer & that he has no medication
for Parkinsons. My husband takes Sinnemet Plus & has been on it for 2 years before
the dementia started. How is your husband managing? Does he have the shakes?
Rod doesnt now because of Sinnemet. Now we have to find out how to deal with the
dementia! All these pills & their side effects ... - and we partners (wives) try our
best to help them & ourselves to cope. Its not easy, is it. Jessica

Hi Jessica, Phils right hand shakes uncontrollably, he cant use it for cutting food or holding a cup, very frustrating for him as he is right handed. He also has a tremor in his left leg, but thats not so bad. The dementia is the real problem for us, he has got so bad over the last couple of months, and has started getting very aggressive, the memory support team have passed him on to mental health, they (she) is due here this morning, as things are getting so bad, and I am waiting for social services, supposed to be fast tracked as we ended u p at A&E last week, afraid I am not coping very well some days, hope you Rod gets his meds sorted and they work for him, take care Mabbs

 

[Caz60]

Dementia

Hi ,My Hubby has LBD he was diagnosed last July but has had cognitive issues for a few years now where most things he does are opposite .As in leave the tap running ,leaves open the wardrobe doors,attempts to cross the road at the wrong time ,puts everything on inside out back to front,handles his glasses with the lenses ,I'm forever watching over him also everything you say he takes in as an opposite .It does wear you out doesn't it.Im afraid sometimes I'm not as patient as I should be but when I snap at him after unlocking doors instead of locking I cry and feel bad .I know there's a lot worse to come he's 69 and has suffered for about 6 years now .Im so sorry for everyone who is a carer I'm sure like me you do your utmost for the ones that can't care for themselves Its just a bit tough sometimes .xx

 

[patsy56]

Hello, Patsy, Sorry its taken me a while to reply - yes, I'll be your friend. I think we
have a lot in common as Rod was diagnosed 4 years ago with Parkinsons although I had
known long before that there was something wrong. How long has your B had dementia?
With Rod it has only been in the last few months. I could write a lot more but am running
out of space & not sure how to work this website! Take care. Jessica

I suppose if you think about it early onset about a year ago, just gradually getting worse....I suppose I don't notice as I live with it. Yes like all websites it is daunting but just keep going.

And yes I think it was probably 4 yrs ago the tremors started so yes 4years. B is 75 how old is your hubbs? May I ask

 

[pony-mad]

Dear Jessica, My Dad had Parkinson's and was on the same medication as your husband. It was only after about 10 years that he started having hallucinations; most distressing were the maggots he saw all over the house resulting in him taking the place apart removing skirting boards etc. At the time we thought it was the medication but since reading on here about the various forms of dementia I think it was probably that. He was on so much medication I think any more would have been counter productive. My sympathies go out to you. Coping with one condition and then to be faced with another is very hard to take. Don't struggle on! Ask for help and if that doesn't work, shout very loudly!!!


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[patsy56]

B almost fell this AM, he had shaved so standing too long . I am doubly troubled, as I have said befor my mother does have dementia and lives an hour away. I did try to get her into a home near me, but she refused....say no more.

But I am so glad I have found here and can talk to like minded people.

 

[patsy56]

I have just had the most upsetting, heartbreaking job, 1st time I have actually had to wash B.

 

[Izzy]

I have just had the most upsetting, heartbreaking job, 1st time I have actually had to wash B.

Every first is hard. Thinking of you. x