AD finally diagnosed at 62

[small]

After several false starts, we finally got the diagnosis from the Neurologist yesterday. Remarkably my husbands original PET scan REPORT had singled out parietal lobe damage as the only significant area of damage. However once the neurologist received the actual Disk (missing from our first consultation!) showing the scan itself, she showed us that it clearly showed damage to temporal lobes as well. She said this was classical signs of AD. So my husband could have been diagnosed at least 4 months ago. Oh well, I'm grateful we know now. At least this will hopefully take the sting out of my husband's denial and blame for me!

on a more hopeful note he should be able to get treatment now, although even that takes a few weeks to arrange apparently.

We still have one problem. The neurologist would like my husband to have a lumbar puncture to confirm her diagnosis. My husband is dead against it but she was quite persuasive and he agreed to consider it. He suspects she just wants it for research purposes and he is wary of any risks , side effects of the procedure. Now that I've looked it up , I think he may be right and not just his usual blanket suspicion of all things medical.

Have any members got any insights, experiences etc that may help?

Feeling resigned,

Jackie

 

[Grannie G]

All I know about Lumbar Punctures is they're painful. Did the consultant tell you and your husband the benefit inhsving a Lumbar Puncture? I would only consider one if I thought it would help.

My father had one. He had fluid on the brain but his symptoms and progression were similar to dementia.

 

[Tolkny]

Have any members got any insights, experiences etc that may help?

No,sorry, but having read that post I didn't think it right to pass by, without commending Jackie's perseverance. I hope she asks for all the help she needs and so minimizes the challenges ahead and makes a priority of taking breaks from the stressful times so that she can be herself without having to constantly be responsible for her husband.

It is far easier to comment than to deal with this stuff and I recognise that with gratitude and humility.

 

[Izzy]

Jackie I have no experience to help you. I just wanted to say hello and I hope you will find some comfort and support through TP.x

 

[Sandy]

Hi Jackie,

This is the one thread that I could recall that mentioned the lumbar pucture procedure:

http://forum.alzheimers.org.uk/showthread.php?t=22386&highlight=lumbar

I think the main question to ask is how will this process relate to a more accurate diagnosis and how will that effect treatment?

Take care,

 

[jenniferpa]

Like Sandy, I'd be asking exactly what difference this might make with regard to treatment. One thing if such a procedure could make a difference in terms of treatment, but it doesn't from what you say, sound as if this is the case. I haven't had a lumber puncture, but I have had a spinal, and I have to say, much of the side effects relate to the willingness of the patient to not move, and not attempt to sit up. I'm wondering if your husband would be capable of that level of self control.

 

[small]

You are a lovely lot of people. I'm so lucky I found you! Your comments were very helpful and to the point. I've left a message on the nurse's helpline so I can ask all the questions you suggested, and I will have a pad and pen handy. Special thanks to tolkny for her kind words, they cheered me up also. hopefully I'm going home at easter to see my lovely sisters alone, so that will be a lovely respite.

On a more hopeful note, now that the diagnosis has settled in, John has cheered up remarkably. I think it put his mind at rest in a funny way, because at least he knows he"s not to blame, he's not stupid, he's not any of these things, he's got an illness that anyone could get and he's just very unlucky that its happened so young. As my son said once he"s got used to the idea he may even be proud of his achievements, considering, and wear his illness like a sort of badge of honour. He's that sort of bloke. He's forever showing people his hearing aid s so that they can marvel at their unobtrusiveness!

Oh well onwards and upwards.

 

[Tolkny]

Oh well onwards and upwards.

Fantastic, I hope Jackie can have some real fun with her sisters

 

[Countryboy]

Hi Small just read your thread sorry to hear your husband John has been diagnosed with frontal-temporal-dementia its great that as a family your all so positive about the diagnoses with that type of attitude I feel sure John with your support can carry on living a very good quality of life, I know this because I my self was diagnosed 11 years ago Alzheimer’s then frontal-temporal-dementia with had great support from family and medical staff and still going strong "I was 57 when first diagnosed"
take care and keep positive, the alterative to being positive isn’t so great

Cheers Tony

 

[small]

hi Tony
Just read your message That was so kind and very encouraging too.
With regard to the lumbar puncture, after asking allthe right questions, we have decided not to go ahead. It would not materially alter the diagnosis or treatment options, so thanks again for all your helpful comments.

Now that the diagnosis has settled in, John is now understandably worried, and I have to admit so am I. I keep thinking of my mum looking after my dad for years {he had mental illness for the last 40 years of his life]. I marvel at how she kept going , with 9 kids as well to look after. I always loved herbut now!......