Posterior Cortical Atrophy and limb jerking.

[polly1]

My husband newly diagnosed in November, has jerking of his limbs, both during the day and at night. Not continually, but he is aware of it.
We have been told that his illness is at early/moderate stage but when looking at the symptoms for PCA it says limb jerking is a later symptom. I feel really scared thinking we may have even less time left than we originally thought. He is not too bad otherwise and is still more or less independent, although I probably do more for him than I should! His memory is also a bit hit and miss but maybe this would have happened anyway as he ages. (He is 57).
When we saw the neurologist last week thank goodness it was a better experience for us, as previously his treatment of us was not good. I asked if Andy was a candidate for Aricept and was told no. Wonder why Terry Pratchett takes it and feels it has helped him? Probably down to money I guess!

Any one have any thoughts please?
Thanks Maggie

 

[Christin]

Hello Polly, I am sorry to read your post about your husband, but pleased that you had a better experience than before. I wonder if it is worth making an appointment to speak to your GP, to ask questions and raise any concerns you have. In my own opinion, I do think that having answers can help us deal with life so much more easily.

Very best wishes to you both xx

 

[lilac43]

Re limb jerking

Hello Maggie, I to was sorry to read your post, my husband is 59 now and he was diagnosed with a rare varient of young onset alzheimers with degenerative apraxia in 2009 , he suffers from limb jerks day and night , some he is aware of others he s not. As far as I as I have learned these are similar to parkinsons, in that its the same part of the brain that is affected. I may be wrong its just my understanding of it all. As for the aricept I would ask the doctor why it is not prescibed to your husband, it was an expensive drug but has recently dropped very low, so cost should nt be a reason. Hope you find help and support on TP.
Best wishes Linda x

 

[polly1]

Hello Polly, I am sorry to read your post about your husband, but pleased that you had a better experience than before. I wonder if it is worth making an appointment to speak to your GP, to ask questions and raise any concerns you have. In my own opinion, I do think that having answers can help us deal with life so much more easily.

Very best wishes to you both xx

Thanks Christin for your best wishes.
When we saw our GP he was not even aware of PCA but would learn about it! I will leave the subject of Aricept for now as I don't think Andy needs it yet!

 

[polly1]

Hello Maggie, I to was sorry to read your post, my husband is 59 now and he was diagnosed with a rare varient of young onset alzheimers with degenerative apraxia in 2009 , he suffers from limb jerks day and night , some he is aware of others he s not. As far as I as I have learned these are similar to parkinsons, in that its the same part of the brain that is affected. I may be wrong its just my understanding of it all. As for the aricept I would ask the doctor why it is not prescibed to your husband, it was an expensive drug but has recently dropped very low, so cost should nt be a reason. Hope you find help and support on TP.
Best wishes Linda x

Hello Linda
Thanks for that info re the parkinsons connection.
I will leave the subject of Aricept for now as I don't think Andy needs it yet.
Best wishes Maggie

 

[tre]

Hi Polly,
my husband has PCA too and is now at moderately severe stage. He has experienced limb jerking (myoclonus I think they call it) for about the last six months, worse at night. I mentioned this when we saw the Consultant last August but did not get the impression it was anything they saw as a particularly worrying symptom. He was taken off Aricept in October 2010 and without this the limb jerking at night is definitely decreased. It still occurs but before could be continous for 20 to 30 mins. David started on Aricept in May 2008 when his MMSE score was around 20/21 and despite what we were told regarding it just slowing the progress it gave a definite improvement in the short term. Now David is on Ebixa ( current MMSE 12-14 when last tested) and again we have seen a definite improvement. I did not have to fight to get the Aricept but I had a real struggle to get Ebixa on the NHS- did succed though. I think you should go back to your GP as it may be the effects are different for PCA. I did ask at the support group whether this had been investigated on a Clinical Trial. Answer was no for Ebixa and trial currently underway for Aricept.
At the next PCA support group meeting on 3rd Feb Dr Jonathon Schott is giving a brief presentation "Future Treatment: where are we heading? " . As your husband is at an early stage of the disease this might be of interest to you.
Tre

 

[phil aldersl]

Hi Polly
Not sure if this helps but it might ,my wife is 56 and suffers from alzheimers, three years into it now but she suffers from myclonic jerks ( not sure if its the same in your partners case) but we were told this is a form of mild epilepsy brought on by the alzheimers she was prescribed Lamotrogine which helps control them. re your refusal by your neurologist
to Aricept maybe we where lucky my wife was put on Aricept straight away and now she has changed to rivastigmine its important that people get these drugs as soon as its diagnosed to slow the process don't give up be a pain and push the issue

 

[crystaly]

My husband newly diagnosed in November, has jerking of his limbs, both during the day and at night. Not continually, but he is aware of it.
We have been told that his illness is at early/moderate stage but when looking at the symptoms for PCA it says limb jerking is a later symptom. I feel really scared thinking we may have even less time left than we originally thought. He is not too bad otherwise and is still more or less independent, although I probably do more for him than I should! His memory is also a bit hit and miss but maybe this would have happened anyway as he ages. (He is 57).
When we saw the neurologist last week thank goodness it was a better experience for us, as previously his treatment of us was not good. I asked if Andy was a candidate for Aricept and was told no. Wonder why Terry Pratchett takes it and feels it has helped him? Probably down to money I guess!

Any one have any thoughts please?
Thanks Maggie

Hi polly my husband has frontal lobe but does have limb jerking which is mainly nightimes. Ther are several medications that do help to control jerking movements . Not sure if they would help your hubby but please ask your dr sodium valproate is one my husband takes . I agree about some neuros as well met quite afew who have no social skills xxx chris

 

[polly1]

Hi Polly,
my husband has PCA too and is now at moderately severe stage. He has experienced limb jerking (myoclonus I think they call it) for about the last six months, worse at night. I mentioned this when we saw the Consultant last August but did not get the impression it was anything they saw as a particularly worrying symptom. He was taken off Aricept in October 2010 and without this the limb jerking at night is definitely decreased. It still occurs but before could be continous for 20 to 30 mins. David started on Aricept in May 2008 when his MMSE score was around 20/21 and despite what we were told regarding it just slowing the progress it gave a definite improvement in the short term. Now David is on Ebixa ( current MMSE 12-14 when last tested) and again we have seen a definite improvement. I did not have to fight to get the Aricept but I had a real struggle to get Ebixa on the NHS- did succed though. I think you should go back to your GP as it may be the effects are different for PCA. I did ask at the support group whether this had been investigated on a Clinical Trial. Answer was no for Ebixa and trial currently underway for Aricept.
At the next PCA support group meeting on 3rd Feb Dr Jonathon Schott is giving a brief presentation "Future Treatment: where are we heading? " . As your husband is at an early stage of the disease this might be of interest to you.
Tre

Hello Tre
Thanks for all that info. I understood that the neurologist had to sanction the prescribing of any drugs or at least wrote to the GP to suggest them. I have not mentioned it to our GP. Andy is being referred to the clinic at St George's (cognitive Neurology Clinic) so I will ask the question about any possible medication when we go there. Am interested to hear about the PCA support group upcoming meeting. Andy has said that he does not want to go there yet! Hopefully they will release the presentation content on the web site.
Maybe Andy will have MMSE test done when he goes to London?
When was your husband diagnosed Tre? I hope he continues to benefit from Ebixa and that you are still able to be prescribed it.

Best wishes
Maggie

 

[polly1]

Hi Polly
Not sure if this helps but it might ,my wife is 56 and suffers from alzheimers, three years into it now but she suffers from myclonic jerks ( not sure if its the same in your partners case) but we were told this is a form of mild epilepsy brought on by the alzheimers she was prescribed Lamotrogine which helps control them. re your refusal by your neurologist
to Aricept maybe we where lucky my wife was put on Aricept straight away and now she has changed to rivastigmine its important that people get these drugs as soon as its diagnosed to slow the process don't give up be a pain and push the issue

Hello Phil
Thanks for the info. I did wonder if the jerking was a form of epilepsy or Parkinson's.
I will certainly fight for any medication although maybe because Andy has PCA (and not Alzheimer's on it's own) is the reason Aricept has not been suggested. Also symptoms not too bad at the moment. Andy being referred to St George's Tooting so will ask the question re medication when we go there.

Best wishes Maggie

 

[polly1]

Hi polly my husband has frontal lobe but does have limb jerking which is mainly nightimes. Ther are several medications that do help to control jerking movements . Not sure if they would help your hubby but please ask your dr sodium valproate is one my husband takes . I agree about some neuros as well met quite afew who have no social skills xxx chris

Thanks Chris for that information.
Best wishes Maggie

 

[crystaly]

Thanks Chris for that information.
Best wishes Maggie

I do apologise for the mistake with your name maggie xxx
chris

 

[tre]

Hi Maggie,
my husband was diagnosed in Jan 2008 but we trailed around for at least two or three years prior to this having had an Eye consultant say there was no problem. In the end in June 2007 we went back to our GP to ask for a second opinion from a different eye consultant. We were told that it might take several months for the appointment to come through and were so desperate we asked about a private appointment. We saw the private consultant 4 days later who said there definitely was a problem. He said we needed a scan and should not be having to pay so transferred us onto his NHS list. After all the eye conditions were ruled out he referred us directly to his NHS neurologist colleague who we saw in December 2007. The rest is history.
Re the support group- there are several attendees in such an early stage that you would not know they had a problem in case your husband thinks it would be depressing for him to go. I am sure an account of the meeting will go up on the website anyway. You could also maybe consider attending on your own as I am sure there are questions you would like answered or you could contact Seb, Jane, Ritta or Gill by email.
I did not know anyone was specialising in PCA at Tooting- I thought in London it was mostly at The National Hospital for Neurology in Queens Square or Charing Cross so I have learned something from you. I know some of the consultants also run clinics at other hospitals such as Addenbrookes in Cambridge. In our local memory clinic David was the only one with PCA until they had another chap referred about a year ago. they said they looked at our notes to help them deal with him but I think awareness of PCA has improved recently.
Tre

 

[polly1]

I do apologise for the mistake with your name maggie xxx
chris

That's ok Chris
My nick name is Polly but usually answer to anything within reason!!!!!

Best wishes
Maggie

 

[polly1]

Hi Maggie,
my husband was diagnosed in Jan 2008 but we trailed around for at least two or three years prior to this having had an Eye consultant say there was no problem. In the end in June 2007 we went back to our GP to ask for a second opinion from a different eye consultant. We were told that it might take several months for the appointment to come through and were so desperate we asked about a private appointment. We saw the private consultant 4 days later who said there definitely was a problem. He said we needed a scan and should not be having to pay so transferred us onto his NHS list. After all the eye conditions were ruled out he referred us directly to his NHS neurologist colleague who we saw in December 2007. The rest is history.
Re the support group- there are several attendees in such an early stage that you would not know they had a problem in case your husband thinks it would be depressing for him to go. I am sure an account of the meeting will go up on the website anyway. You could also maybe consider attending on your own as I am sure there are questions you would like answered or you could contact Seb, Jane, Ritta or Gill by email.
I did not know anyone was specialising in PCA at Tooting- I thought in London it was mostly at The National Hospital for Neurology in Queens Square or Charing Cross so I have learned something from you. I know some of the consultants also run clinics at other hospitals such as Addenbrookes in Cambridge. In our local memory clinic David was the only one with PCA until they had another chap referred about a year ago. they said they looked at our notes to help them deal with him but I think awareness of PCA has improved recently.
Tre

Hello Tre
Your experience was similar to ours re diagnosis. Andy had eye problems and I have private medical cover through my job so we had a private referral to an opthalmic surgeon who realised there was something else going on and sent Andy for a brain scan. We had the diagnosis within a month. Now that the insurance company know it's Alzheimer's our private medical cover is no more!
This clinic at St Georges was opened in 2010 and is led by a Dr Peter Garrard and two others I think. Not sure if any of them 'specialise' in PCA but hopefully they will have some knowledge. It covers early onset alzheimer's and dementia mainly I think. We can commute to Tooting from Aldershot on the train so that is good as I HATE driving. Andy was my driver but that's the end of that!
I will try and make the 3rd Feb for the support meeting.

Best wishes
Maggie

 

[PostTenebrasLux]

Epilim

Hello Maggie,

my cousin, 12 years down the line with PCA (now at ultimate stages), has been on EPILIM for the last few years. Some PCA sufferers rather than all get epileptic-like fits/convulsion. Epilim is medication used for the treatment of epilepsy. At times AD sufferers get Parkinson's Disease and I believe Epilim can be used in those instances as well. My cousin responded very well to the Epilim treatment in combination with AD medication (though at this end of life stage she is only on pain relievers and indeed Epilim to keep her spasms under control). Always think TONGUE if a severe fit/jerk happens - my cousin has bit her tongue quite a few times when the jerks were violent. Even at her 11th hour now there are occasionally very mild jitters...

I hope you find a comfortable solution - best wishes.
Martina

 

[polly1]

Thanks for that information Martina.
Will raise the subject of Epilim when things get worse.

Best wishes
Maggie

 

[Stewart]

Hello Maggie

My wife (58) is in the later stages of PCA and is now in a care home for younger people with dementia. She has never experienced any jerking movements.

We did try aricept for a short while but it had no discernible effect. The consultant said he was not surprised because the way that aricept works suggests that it will not be as effective for PCA sufferers.

All the best

Stewart

 

[polly1]

Sorry to hear about your wife Stewart.
How long has she been suffering with PCA?
I was at the London PCA support group meeting 2 weeks ago and the speaker (Dr Schott) said that Aricept was worth trying from the moment of diagnosis, although it did not work for everyone. Our consultant locally has said no to prescribing it but I will ask him again as I feel anything is worth trying.
You are fortunate to have found a care home for younger people with dementia. I don't think there are many/any near us in Aldershot.
I absolutely dread the future, only hope I can keep it all together!

Best wishes
Maggie

 

[Stewart]

Maggie - my wife was teaching A level science in 2005 but was struggling and we had no idea why. In early 2006 she was referred to a specialist and he immediately made her stop work. After a misdiagnosis of CBD (a rare form of Parkinsons), she was finally diagnosed with PCA in early 2007. The illness progressed pretty rapidly from diagnosis such that she is now on continuing healthcare and does not communicate or recognise anyone. One blessing is that she does not show any signs of distress now.

I looked after my wife at home until six months ago when it became apparent that, to her, it didn't matter where she was. I was lucky to find somewhere small (10 younger people) and really nice that can give her much better care than I could.

It's a sad story like all of those on this forum.

Stewart