Was just told I have Frontal Lobe Atrophy

Shari

Registered User
Mar 27, 2013
9
I am 51 year old female and was having symptoms of a Cerebellum Stroke, so had tests done. Ct Scan showed nothing so had an MRI done. No signs of stroke or lesions but found Frontal Lobe Atrophy. My eye test showed slightly enlarged blood vessels.

I have been care taking my family my whole life and looked forward to my new career in Nail Art Technology. However, I have memory problems, headaches, tremors, hands can shake and weakness. I also have trouble swallowing, math and spelling.

Now my Doctor asks if I'm ok with this news? He didn't say why. I came home and found out on the internet, there is 2 to 10 years life expectancy for people with this. Is this true? Am I going to be become burden and die? I have a son with Autisum and a horse and a senior mom I am caring for. I have an appointment with a Neurologist who is the worst in my area. The internet is my only source of information. Is there any hope or help? I've had a hard life and looked forward to my time.
 

Butter

Registered User
Jan 19, 2012
6,738
NeverNeverLand
Welcome to TP Shari. You are not alone here. We have many members who are carers or who are sufferers.

I am very sorry you are having to deal with this diagnosis on your own.

But hang in there and I am sure others will be along soon with support.

Please ask any questions you may have. I do not know the prognosis, myself.

I hope you find this website as helpful as I have done.
 

Polly1945

Registered User
Oct 24, 2012
261
Hereford
Hi Shari,

Just wanted to welcome you to this forum. I don't know any about Frontal Lobe Atrophy
but I'm sure others on here will.

I would definitely go back to my Doctor and ask him to explain all about it, it's not right that you haven't been given any information or help.

Pauline
X
 

Grannie G

Volunteer Moderator
Apr 3, 2006
70,674
Kent
Hello Shari

I wouldn`t be recommending your doctor for Mr Sensitive after asking if you are OK with the bad news of your health.

I hope you will find support , help and answers here on Talking Point . If you are not happy with the Neurologist you are sent to, you can always ask for a second opinion.
 

creativesarah

Registered User
Apr 22, 2010
9,478
East Hunsbury Northamptonshire
Sorry that you have had to find us but just want you to know that its a really supportive place to be

I rang my doctor when I was first diagnosed and she called me in we had a good chat

Hope your GP will be as helpful

Much support Sarah
 

chrisuz

Registered User
May 29, 2012
94
East Yorkshire
HI Shari,
I am sorry you find yourself in this position. After 10 years of trying my husband was DX last Nov with Frontal Lobe atrophy at 60yrs of age. We also were left with no information, and we have found information is sadly lacking amongst those we have looked to for support. We had to find out most of what we needed for ourselves and some info we were given was actually wrong, but we have found Talk Point and the FTD support group to be really invaluble, http://www.ftdsg.org/general_information/, this is the link. We have been very lucky that our community pychiatric nurse, who visits monthly, and is available on the phone, is brilliant, also if you in the UK in some areas you can access Admiral nurses who support dementia patients. Our local Alz Soc and memory cafe have also been brilliant. Be aware that as we found, the internet is often the main source of info, but the illness can be very different for different people, symptoms and progression can be very individual and very hard to predict, and I got quite overwhelmed with info at the start. What we have done is to sort out as much as we could early, to make the future easier, and now we are doing what we want to do now and enjoy life. My husband also has swallowing problems, tremors, memory problems, muscle pain and weakness, and problems with organising and planning, and emotional blunting, he also gets very tired easily, luckily I am older than him and an OAP so there is no problem with me being at home. I have mobility problems with arthritis so my brain and his legs makes a good team so life is different now but still very good. We now live in today, and because of the arrangements for the future made, the future can take care of itself.:)
 
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Big Effort

Account Closed
Jul 8, 2012
1,928
Dear Shari,
I have just seen your post. How very upsetting for you. First, welcome to the forum, I think it could become a real life line for you because you can interact with both dementia patients and carers, so you can access lots and lots of good information, tips for coping, and there will be so many hands held out to you.

I can see from your post that you are highly articulate, and I can imagine how upset you must be. I look after my mother, 86, who has fairly advanced dementia, and if I were in your position this is what I would be doing:

- Taking a good bit of time out just to come to terms with the diagnosis. You know how they say never move home for a year after bereavement nor make a big decision, well, I would just take time to let my mind settle.

- Second, I would organise a living will, power of attorney and so on. Lots and lots of threads about this here, and you will see why it is important to get the right things in place and make choices for possible futures.

- Third, I would post as many threads as you have thoughts and concerns. I looked after Mum on my own for three years, and really I allowed myself to become quite isolated. Here on the forum there are kind, experienced, caring people posting about things 24/7, so there is no need to 'go it alone'. In a short time here you will be known, and also there will be people you know and respect for the quality of their input.

- Take a gander at the section of this forum dedicated to people who suffer from dementia in its different forms. You will be amazed at what sparky, intelligent, insightful, courageous and interesting people there are who post regularly. They demonstrate it is possible to live life well even with dementia.

- Finally, I wish I could wave a magic wand and make all this disappear for you. You clearly have all your wits about you, so I would leave no stone unturned in making sure I had the best possible medical team around me. There seems to be great discrepancy in the treatment given by different doctors, and a good doctor whom you trust and who has a handle on your illness would be important to me.

Thinking of you, and sending healing your way. How brave you aree, and intelligent, and there is no doubt that you are being tested. Sending you Best Possible Outcomes, BE
 

Helen33

Registered User
Jul 20, 2008
14,697
Dear shari,

I am sorry that you have been diagnosed with frontal lobe atrophy. My late husband had a semantic dementia of the frontotemperal lobe. As some encouragement to you, he had a lovely life even with dementia. He was able to cycle, fish, garden, paint, walk play his guitar and harmonica. Of course there were the effects of the illness but with the correct information and SUPPORT it is possible to have a good quality of life.

Talking Point was a wonderful source of information and support and i hope that you find it helpful shari.

Love