What Now?

john51

Registered User
Apr 26, 2014
289
Dunstable, Bedfordshire
I was diagnosed with vascular dementia just over a year ago. We have learned about living with it, and have coped well with giving up work, losing my license and the other challenges it brings.
I really wanted to help develop treatments so that one day a diagnosis of dementia was not the life wrecking thing it is today.
Recently I had a very detailed MRI along with all the other tests we have done to diagnose dementia. This was to see if I was suitable for a drug trial. I was really hopeful that there might be medication to help with vascular dementia.

I have no problem coping with the fact that my dementia is not suitable for the drug trial.

The real bomb shell is that the MRI shows that in addition to the vascular dementia I also have alzheimers with lewy bodies.

I feel like I'm right back at the beginning of the dementia journey. I don't know what to expect.

I feel really really down.

Help

what do I do now?
 

jeany123

Registered User
Mar 24, 2012
19,036
70
Durham
I am so sorry John, I can't answer your question but I send best wishes and hope that you get all the information and help that you need xx
 

chick1962

Registered User
Apr 3, 2014
11,282
near Folkestone
I was diagnosed with vascular dementia just over a year ago. We have learned about living with it, and have coped well with giving up work, losing my license and the other challenges it brings.
I really wanted to help develop treatments so that one day a diagnosis of dementia was not the life wrecking thing it is today.
Recently I had a very detailed MRI along with all the other tests we have done to diagnose dementia. This was to see if I was suitable for a drug trial. I was really hopeful that there might be medication to help with vascular dementia.

I have no problem coping with the fact that my dementia is not suitable for the drug trial.

The real bomb shell is that the MRI shows that in addition to the vascular dementia I also have alzheimers with lewy bodies.

I feel like I'm right back at the beginning of the dementia journey. I don't know what to expect.

I feel really really down.

Help

what do I do now?
Hello John , plz don't despair . My husband was diagnosed with Az 5 years ago and then after 2 strokes with Vascular dementia . He can still do loads of things and is holding up well . The dementia has been quite stable with the medication he is on . Try and take each day as it comes . Hope this helps a bit


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john51

Registered User
Apr 26, 2014
289
Dunstable, Bedfordshire
Hi Jeany and Chick

Thank you both very much for your responses.
Chick I'm pleased your husband is doing well.
My GP has asked the Consultant for his advice about starting medication now that there is alzheimers involved as well as vascular dementia.
I spent ages trying to work out how to respiond to your posts on my phone, but gave up and came to the laptop instead.

Lets be totally honest; my wife found me in tears over the phone, and brought me the laptop and in her caring loving way has coaxed me into using the laptop instead.

My patience level has definately gone down. And it wasnt brilliant in the first place.

The latest developments really has got me down
 

JigJog

Registered User
Nov 6, 2013
237
Hi John,

I was only thinking about you the other day and wondering how you were getting on.

I'm sorry to hear of these latest developments. Perhaps now Alzheimers is involved, you may be able to be prescribed some medication.

My OH was diagnosed with Alzheimers 2 years ago and he has been taking Memantine. It has been really marvellous for him. It worked very quickly and was like taking a step back in time. It has certainly given us the chance to have some good times over the last two years. Fingers crossed for you.

You were a great help John when I asked about buying an ipad for my OH. I took notice of your recommendation and bought one and I can honestly say it has been such a good thing for him. We have persevered together as he has learnt to use the apps of interest to him. In fact he's using it so much now, I've had to get my own! :) Thanks for your help and advice with that John.

As a past Maths teacher myself and a primary school volunteer, I have read your posts with great interest.

Try not to despair. You have coped with giving up work, stopping driving, going into primary school and difficult bus journeys. You have the support of your caring, loving wife and your GP. Just one day at a time John.

My best wishes go to you. Keep us all in touch when you feel that you can.

JigJog x
 

AlsoConfused

Registered User
Sep 17, 2010
1,953
Hugs to you and your wife.

Sometimes life is so unfair. You're being as positive as you can be even though you must feel you're being repeatedly dumped on ...
 

john51

Registered User
Apr 26, 2014
289
Dunstable, Bedfordshire
Hello JigJog

Many thanks for your encouragement.

I am still going into school as a volunteer to hear children read.
Its only since retiring from work that I realised what fun younger children are to work with.
Hearing them progress with their reading lifts my spirits.
Last week i even got an outstanding from an inspector who thought volunteers would all be young people looking for work experience, rather than a grey haired middle aged man (that made me laugh!). The best bit is that having routinely got Outstanding and the occasional Good grades for my teaching a few years ago, in the 12 months leading up to my retirement I got nothing better than 'needs improvement and more regularly inadequate. To get an outstanding again was brilliant.

I really do get the ups and downs at the moment. Earlier I was really down. Now I feel quite good again. I've just done a menu and shopping list for next week and plan to go and do the shopping later.

Hey ho life goes on even with this awful disease
 

john51

Registered User
Apr 26, 2014
289
Dunstable, Bedfordshire
A great many thanks alsoconfused.

You are right, but my moods do shoot up and down at the moment. Right now I feel really good. But it can change by the minute.

Thanks for your kind thoughts

John

Hugs to you and your wife.

Sometimes life is so unfair. You're being as positive as you can be even though you must feel you're being repeatedly dumped on ...
 

JigJog

Registered User
Nov 6, 2013
237
Last week i even got an outstanding from an inspector who thought volunteers would all be young people looking for work experience, rather than a grey haired middle aged man (that made me laugh!). The best bit is that having routinely got Outstanding and the occasional Good grades for my teaching a few years ago, in the 12 months leading up to my retirement I got nothing better than 'needs improvement and more regularly inadequate. To get an outstanding again was brilliant.
Fantastic! What a star! I'm glad to hear that you are still going into school. I hear grey haired, middle aged volunteers are like gold dust! :) Well done.

I really do get the ups and downs at the moment. Earlier I was really down. Now I feel quite good again. I've just done a menu and shopping list for next week and plan to go and do the shopping later.

Hey ho life goes on even with this awful disease
It does John. Understanding and accepting that there are both ups and downs is a big part of it, I think.

Menu? Shopping list? Shopping? Go John, Go!!

You've lifted my spirits too.

Have a great weekend and post when you can :)

JigJog x
 

chick1962

Registered User
Apr 3, 2014
11,282
near Folkestone
Hi Jeany and Chick

Thank you both very much for your responses.
Chick I'm pleased your husband is doing well.
My GP has asked the Consultant for his advice about starting medication now that there is alzheimers involved as well as vascular dementia.
I spent ages trying to work out how to respiond to your posts on my phone, but gave up and came to the laptop instead.

Lets be totally honest; my wife found me in tears over the phone, and brought me the laptop and in her caring loving way has coaxed me into using the laptop instead.

My patience level has definately gone down. And it wasnt brilliant in the first place.

The latest developments really has got me down
Hello John, sorry I am answering late but we spend the day at Kings hospital in London . Early medication is good as it's meant to slow the dementia down and in my husbands case, I believe it has :) mood swings , well they are part of the illness and if you are anything like my John, frustration sets in too. Your wife sounds lovely . Even after 5 years my husband is so aware of his illness still . I remember so well the emotions , shock and sadness we felt when we first had the diagnosis and then a few years later when vascular dementia got added . We however have adapted and take each day as it comes and have many enjoyments :) May I suggest you get in contact with an admiral nurse if you have them in your area as they are fantastic supplying additional support to you and your wife


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