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Speaking problems

sloeginlin

Registered User
Jun 5, 2017
4
Hello, I am Linda, 66 and about 2 months ago I was diagnosed with Frontal Lobe Dementia. I am feeling abandoned, I am scared, I am angry. All natural things I think, but my question is sometimes I can chat away and it is fine, but if I have to think about an answer, then I have problems. I am unable to think of the word I need, I have massive breaks in a sentence where I am struggling to find the words to use. I get the feeling that I am not believed there is something wrong by some people.

Thank you for reading
xxx
 
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Norfolk Cherry

Registered User
Feb 17, 2018
287
Hi Linda, I saw no one had replied yet, but I'm sure someone will be along soon with more experience than me with this frustrating issue. If people lack empathy, it really is their problem and says a lot about their character as well as our society which fails to challenge prejudiced attitudes towards illness. You take care and I hope this site provides you with lots of support.
 

Amethyst59

Registered User
Jul 3, 2017
5,749
Kent
Hello, Linda, welcome to Talking Point. I know of at least,two of our members who have spouses with Frontol Lobe Dementia. I know that losing the right ‘ word, is a big thing in my husband’s dementia...his is vascular. And I certainly know from my professional life that stress can really affect speech and word retrieval. This might be why you are noticing it more in some situations than others.
I do hope you have a good base of friends and family who are supporting you. It’s horrible to have any sort of illness, but one that is ‘hidden’ like dementia, and one that involves cognitive function has the extra double whammy of not being understood properly and attracting people’s preconceptions and prejudices.
You will always find a sympathetic, and I hope useful and supportive, listening ear here. The members are incredibly friendly, have a wide range of experience and are non judgmental. Whether you have any specific questions, or just want to have a good old moan, you will find support here.
 

karaokePete

Registered User
Jul 23, 2017
5,437
N Ireland
Hello @sloeginlin, welcome to the forum from me too.

It may be worth talking to your GP about this. My wife also has language problems and in the early days a language therapist introduced her to ‘circumlocution’ which helped greatly. It seems to be of less use as the condition worsens but certainly worked for a while.

It’s about times when you can’t find a word like ‘purse’ so you say ‘that black thing I put money in’ sort of thing.

Despite her dementia, my wife took the system on board very quickly and it eased both our lives.
 
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sloeginlin

Registered User
Jun 5, 2017
4
Hello @sloeginlin, welcome to the forum from me too.

It may be worth talking to your GP about this. My wife also has language problems and in the early days a language therapist introduced her to ‘circumlocution’ which helped greatly. It seems to be of less use as the condition worsens but certainly worked for a while.

It’s about times when you can’t find a word like ‘purse’ so you say ‘that black thing I put money in’ sort of thing.

Despite her dementia, my wife took the system on board very quickly and it eased both our lives.
 

sloeginlin

Registered User
Jun 5, 2017
4
Thank you karaokePete, it's something I have already started doing myself strangely. My GP did refer me to Speech Therapy in Bourne, but they wrote today saying that they are not commissioned to take on Dementia patients with speech problems! I still have not had an appointment with mental health yet, but I am sure it will come about soon
 

Patrioted

Registered User
Jul 4, 2017
23
Hello, I am Linda, 66 and about 2 months ago I was diagnosed with Frontal Lobe Dementia. I am feeling abandoned, I am scared, I am angry. All natural things I think, but my question is sometimes I can chat away and it is fine, but if I have to think about an answer, then I have problems. I am unable to think of the word I need, I have massive breaks in a sentence where I am struggling to find the words to use. I get the feeling that I am not believed there is something wrong by some people.

Thank you for reading
xxx
Hi Linda,

I’m Edd. My diagnosis is just a generalized “Alzheimer’s,” which I’m told is the worst kind. Frankly, it’s an awful diagnosis that is progressively debilitating, currently not curable and fatal in the end. That’s the bad news but the good news is that all else is good.

What I mean here is when you get a diagnosis like this the quality of life you experience thereafter is all about attitude. I know, it’s easier said then done but I’m a 69 year old man who is a full three years into his original diagnosis and I’m here to tell you that it can be done.

Here is what I do. First I maximize my cognitive abilities with mental exercises and healthy supplements. Cognition is the key. Keep as much of it as you can for as long as you can. Accept that you can’t get back cognition that you already lost so don’t dwell on it. We can’t get back our youthful good looks and vigor either. Do we dwell on that and feel sorry for ourselves because we are older or do we instead feel gratitude for first having been able to grow old (many don’t) and instead concentrate and “senior only benefits.” First, I don’t know about you but I find Beira grandparent is much more fun then being a parent was. For me that’s a big benefit that I both recognize and appreciate. Second, as awful as a dementia diagnosis is having an early diagnosis allows you to still participate and plan for the eventual inevitable. For me that was getting my personal affairs in order while I was still able to do so (i.e., wills, general and medical power of attorney, ensuring which trusted healthy family member you wanted to put on your bank accounts to manag
 

Patrioted

Registered User
Jul 4, 2017
23
Hi Linda,

I’m Edd. My diagnosis is just a generalized “Alzheimer’s,” which I’m told is the worst kind. Frankly, it’s an awful diagnosis that is progressively debilitating, currently not curable and fatal in the end. That’s the bad news but the good news is that all else is good.

What I mean here is when you get a diagnosis like this the quality of life you experience thereafter is all about attitude. I know, it’s easier said then done but I’m a 69 year old man who is a full three years into his original diagnosis and I’m here to tell you that it can be done.

Here is what I do. First I maximize my cognitive abilities with mental exercises and healthy supplements. Cognition is the key. Keep as much of it as you can for as long as you can. Accept that you can’t get back cognition that you already lost so don’t dwell on it. We can’t get back our youthful good looks and vigor either. Do we dwell on that and feel sorry for ourselves because we are older or do we instead feel gratitude for first having been able to grow old (many don’t) and instead concentrate and “senior only benefits.” First, I don’t know about you but I find Beira grandparent is much more fun then being a parent was. For me that’s a big benefit that I both recognize and appreciate. Second, as awful as a dementia diagnosis is having an early diagnosis allows you to still participate and plan for the eventual inevitable. For me that was getting my personal affairs in order while I was still able to do so (i.e., wills, general and medical power of attorney, ensuring which trusted healthy family member you wanted to put on your bank accounts to manage your affairs when you’re no long able to, etc., and to just let loved ones and friends know your desires and wishes for when you progress, how you want to be cared for, and generally tending to those final important matters. That proved to be highly beneficial to my loved ones. It also gave me peace of mind. Less worry meant less stress.

Next I started to refine my “bucket list” and decide what was really important for me to do in the short term and what was within my means to do. Then I set about doing it. That has been a whole lot of fun and brought me a pot of happiness. I made a point of rediscovering my sense of humor. I spend more time laughing and making others laugh then I ever have before. I’m not talking about learning jokes and becoming an amateur comedian either. I’m talking about “witt” and deliberately looking for the funny things that happen in everyday life, especially with kids and animals, and tell others about what you witnessed and experienced. If you see or hear a funny story share that to. It will make others interesting and laugh with you (everyone enjoys such things) and it takes their minds and yours off a condition that nobody can do anything about including you.

Keep your mind active. Their is great truth in the saying “use it or lose it.” Read, write, do puzzles, play crossword puzzles, if you are in the least technical their are loads of cognitive mind games you can download to exercise your mind. Also feed your brain. My neurologist, in addition to prescribing me doneprizol for my Alzheimer’s, also recommend that I take Bacopa, Ashwanda, and Coconut Oil natural supplements which I regularly buy on Amazon.com. They are all reasonably priced and affordable but over time they do wonders. These are natural remedies known to help with cognition. I have pretty much stabilized my lrogreidoing this for the last three years. No, it’s not a cure. But it does maximize what ever cognition you have in each stage of your dementia progression thus increasing your productive time. A clearer mind help you remember more and keeps you independent for a much longer time. That’s great for you and is a blessing for your care givers who won’t have to be strained with your “intense care” for nearly as long.

In short Linda, I have taken as much more time to count my blessings then I have to focus on my dementia. When I do focus on my dementos I try very hard to even make that productive “prepetation and planning” time as opposed to the always depressing and sad “feeling sorry for myself” time. The latter has zero benefits and only detriments.

What has all this done for me? Well that’s simple. It has allowed me to have dementia and be happy at the same time. It’s also allowed me to make loved ones happier instead of being so demoralized, sad, and depressed about my condition. If you’re happy, really that’s what matters most.

If you start to get down remember that you’re not alone and certainly not the only person afflicted with dementia. You have the company of millions worldwide with the same desease so never think, “Why me, why me?” Should it be someone else instead of you? Would you rather have terminal cancer, heart desease, or some other incurable disease? God didn’t single us out for punishment. No we didn’t do anything wrong and no, we don’t deserve dementia anymore then someone else deserves cancer, heart cease, cystic fibrosis, or to be killed in a car or airplane crash, etc., etc. This is life. None of us can cheat life. Sooner or later we all have to die of something. THAT IS THE CIRCLE OF LIFE. Accept your faith. Count your blessings, Pray for a cure. Do what you personally can to take care of yourself and delay your progression/cognitive decline for as long as you can and spend the rest of your time in a positive frame of mind and enjoy your life for as much and as long as you can.

Remember, some people who keep their stress managed (stress being the most significant cause of rapid cognitive deciliter in dementia patients) and do the aforementioned can be functional with dementia for many years.

I hope this helps and I wish you only the best.

EDD
 

nannyo

New member
Feb 14, 2018
2
Hello, I am Linda, 66 and about 2 months ago I was diagnosed with Frontal Lobe Dementia. I am feeling abandoned, I am scared, I am angry. All natural things I think, but my question is sometimes I can chat away and it is fine, but if I have to think about an answer, then I have problems. I am unable to think of the word I need, I have massive breaks in a sentence where I am struggling to find the words to use. I get the feeling that I am not believed there is something wrong by some people.

Thank you for reading
xxx
Hi Linda im Heather I was diagnosed about 6 months ago as being at the start of Alzheimer's im 71 i know how you feel and what you are going through i'v found that if i get anxious about thing then i get worse sometimes i can't even remember how to spell a word (thank you for google) he can help a lot when i wright letters lol lol . i look at it this way i cant change things so i make the best of what i have if i forget things or words as you do j ust make a joke of it (Alzheimers kicking in again) i know we all deal with things in different ways but i hope this helps and if you need someone to talk to please get in touch.
 

motherlily

Registered User
Apr 22, 2014
8
South Wales, UK
Hello, I am Linda, 66 and about 2 months ago I was diagnosed with Frontal Lobe Dementia. I am feeling abandoned, I am scared, I am angry. All natural things I think, but my question is sometimes I can chat away and it is fine, but if I have to think about an answer, then I have problems. I am unable to think of the word I need, I have massive breaks in a sentence where I am struggling to find the words to use. I get the feeling that I am not believed there is something wrong by some people.

Thank you for reading
xxx
Hello Linda, I'm so sorry for your diagnosis. My husband was diagnosed with FTD in 2013 but had symptoms for many years beforehand. Your comment that you get the feeling that some people don't believe there is something wrong, really resonated with me because in the earlier days, no-one heard my fears that my husband had 'something wrong'. Even after all the testing and scans where Picks could be seen, some who should know better, said crass things that made us all think he was pretending somehow. Even now, when it is obvious, we still hear the comment: 'oh he remembers things!'. I have to stop myself from yelling that bvFTD means that he has maintained SOME ability with memory and this is what causes the confusion of others, however, his behavior can be off the wall at times!
I totally understand your feelings of abandonment too and would urge you to put together your own support system. This can include dementia activity groups, informative literature, and even down to a local swimming pool. You can find alternative support. In the UK FTD is known as a dementia. In other places it's known as Frontotemporal Degeneration-this would serve to help others to accept the presenting differences...if this would be adopted here.
A book I would recommend is 'What if its not Alzheimers?' by Gary & Lisa Radin. it is a care-givers guide of FTD but it may help you as it has information, on the differences between the FTD's.
I admire your strength in reaching out and trying to find answers. My husband was unable to verbalize his anger, in fact it was only recently that he has accepted that there is indeed 'something wrong' Linda, so you are amazing. Kudos to you xx
 

Cazzita

Registered User
May 12, 2018
547
Just to say 'hello' and wow, you have had some great responses here. Hope it makes you feel more hopeful about coping in the future. Try to ignore anyone who makes you feel awkward - it might happen to them one day and then they might understand! I might get that book mentioned too to help me understand more. Good luck :)
 

PJ

Registered User
Jan 26, 2017
348
Bristol
Hi @sloeginlin sorry I must have missed your post back in Aug! I also have FTD, I’m 51 & was diagnosed in Apr this year. So we are probably both going through similar things.
I’m here (as well as everyone else on TP) if you want to chat.
Take care x
 

Amlama88

Registered User
Feb 13, 2017
46
Hi Linda,

I’m Edd. My diagnosis is just a generalized “Alzheimer’s,” which I’m told is the worst kind. Frankly, it’s an awful diagnosis that is progressively debilitating, currently not curable and fatal in the end. That’s the bad news but the good news is that all else is good.

What I mean here is when you get a diagnosis like this the quality of life you experience thereafter is all about attitude. I know, it’s easier said then done but I’m a 69 year old man who is a full three years into his original diagnosis and I’m here to tell you that it can be done.

Here is what I do. First I maximize my cognitive abilities with mental exercises and healthy supplements. Cognition is the key. Keep as much of it as you can for as long as you can. Accept that you can’t get back cognition that you already lost so don’t dwell on it. We can’t get back our youthful good looks and vigor either. Do we dwell on that and feel sorry for ourselves because we are older or do we instead feel gratitude for first having been able to grow old (many don’t) and instead concentrate and “senior only benefits.” First, I don’t know about you but I find Beira grandparent is much more fun then being a parent was. For me that’s a big benefit that I both recognize and appreciate. Second, as awful as a dementia diagnosis is having an early diagnosis allows you to still participate and plan for the eventual inevitable. For me that was getting my personal affairs in order while I was still able to do so (i.e., wills, general and medical power of attorney, ensuring which trusted healthy family member you wanted to put on your bank accounts to manag
Hi Edd
Just read your post and you are so inspiring. My dad passed away from alzeimers 3 weeks ago and I pray he thought the way that you did. I wish you all the best
Amy xxx
 

AliceA

Registered User
May 27, 2016
2,807
Hi Linda,

I’m Edd. My diagnosis is just a generalized “Alzheimer’s,” which I’m told is the worst kind. Frankly, it’s an awful diagnosis that is progressively debilitating, currently not curable and fatal in the end. That’s the bad news but the good news is that all else is good.

What I mean here is when you get a diagnosis like this the quality of life you experience thereafter is all about attitude. I know, it’s easier said then done but I’m a 69 year old man who is a full three years into his original diagnosis and I’m here to tell you that it can be done.

Here is what I do. First I maximize my cognitive abilities with mental exercises and healthy supplements. Cognition is the key. Keep as much of it as you can for as long as you can. Accept that you can’t get back cognition that you already lost so don’t dwell on it. We can’t get back our youthful good looks and vigor either. Do we dwell on that and feel sorry for ourselves because we are older or do we instead feel gratitude for first having been able to grow old (many don’t) and instead concentrate and “senior only benefits.” First, I don’t know about you but I find Beira grandparent is much more fun then being a parent was. For me that’s a big benefit that I both recognize and appreciate. Second, as awful as a dementia diagnosis is having an early diagnosis allows you to still participate and plan for the eventual inevitable. For me that was getting my personal affairs in order while I was still able to do so (i.e., wills, general and medical power of attorney, ensuring which trusted healthy family member you wanted to put on your bank accounts to manag
Wonderful attitude, as you said attitude is the key and this applies to any age. situation, condition. Your grandchildren will learn a lot from you!
 

Haverton

Registered User
Sep 12, 2016
59
Essex
Hi linda i share most of your problems and they are not easy to manage but you are no longer alone we, on this site, really care and members have a wealth of information and empathy that has been a great help for me. like you i went through a phase of anger, fear and a sense of bewilderment.. Members supported me in such a way i felt better.

Take Care
Haverton