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I may Have FT?
Posted: Friday, October 4, 2019 3:30 PM
Joined: 10/4/2019
Posts: 6

Hello,  I have been going to my Neurologist and he suspected Frontal Temporal Dementia so he sent me to a Neuropsychologist for about four hours of testing and he suspects that I have FTD? I hope that you don't mind me asking but are there others here that might have this disease that could give me some guidance and give me an idea as to what testing I should go through to confirm the diagnosis? My dear wife passed away from a Stroke in May of this year which was very hard for me and now this diagnosis. As you might guess this has all been quite a shock for me. One thing for sure is that I need to talk with others who are experiencing Dementia and get some of this off my chest. I know that every one of you was shocked to think that such a thing could come into your life and I am just 65 years old at present so I guess here we go. I am sure that my Neurologist will start me on some meds once he is sure after more testing and I am more than willing to use any med that might help to deal with this. In your opinion are there supplements that I should be using as a daily supplement? I am going to need some counselling to help me make this change and I am willing to do that. My balance has gone south on me for the last few years and I have been seeing Doctors about it and that is why the Doctor is suggesting FTD. From what he said it is very hard to diagnose. Thank you for reading my post and hope that some of you may have some ideas. This is my first post here and thank you for letting me post on your forum.
Gig Harbor
Posted: Saturday, October 5, 2019 10:22 AM
Joined: 3/10/2016
Posts: 657

I am sorry that you are having to go thru this. There is a closed site on Facebook that you can request to join. It is called Memory People. A man named Rick Phelps started it and he has dementia. It is a very interesting site with lots of members who would be happy to answer questions you might have.
Jo C.
Posted: Saturday, October 5, 2019 12:15 PM
Joined: 12/9/2011
Posts: 11124

Hello Boats and a very warm welcome to you.  I can imagine what a stunning shock that must have been to hear such news. I am also very sorry to hear of the loss of your beloved wife; these have been deeply difficult days. 

 There is indeed a great place to get much information and communication with others who are experiencing one of the FTDs.  It is, "The Association For FrontoTemporal Degeneration."  They have all sorts of assistance including online forums, what diagnostics are best used, and a helpline.  They also have a section to click on that is for those who are newly diagnosed.  Here is their link: 

Do take a look at the aftd group, I think you will find much there.


Posted: Saturday, October 5, 2019 12:39 PM
Joined: 10/4/2019
Posts: 6

Gig Harbor, Thank you very much for the info and I will get onto Facebook to check it out. The more educated we are the more prepared we will be for what comes and maybe being able to slow things down. I truly appreciate your help.
Posted: Saturday, October 5, 2019 12:46 PM
Joined: 9/12/2013
Posts: 3560

Boats - yes finding others in similar situation is a huge help, inspire each other to figure out ways to navigate with a changing brain.

You mentioned supplements - all I can say is if you have ANY doubt about your diagnosis there may be other reasons/causes for your symptoms, esp following loss of your wife, your body can be "off balance" or "drained" so anything that can be helped is worth seeking out.

Yoga - even seated yoga - has been known to help. You could be low of some vitamins or maybe started medications that have side effects. Low levels of B12 cause all kinds of symptoms, the liquid sublingual B12 complex is $7 at drugstore and you'd know within days if it helps.

Some of the Parkinson's symptoms (tremor, speech) have been helped with cannabis.

someone mentioned severe symptoms were from undiagnosed sleep apnea. 

Maybe setting up your living space is key at this point. You lift as many burdens from your shoulders as possible, add what would help and get rid of what is too hard or complicated. Create pockets of comfort in your home, easy, safe spaces that give you comfort and joy.

question everything, think back to past year and what changed

wish you the best

Thank you to others mentioning the other sites. I am going to check out the memory one on FB. My past attempts were ruined by angry responses and insults in comment sections and at the time I was so insecure about knowing my condition and what helps it was enough for me to avoid those places.

love and courage

Posted: Saturday, October 5, 2019 12:54 PM
Joined: 10/4/2019
Posts: 6

Jo C. I really appreciate your kind words and yes it has been a shock but all we can do in a time like this is to keep our head up, trust God and do our best to do anything that we can to make things as good as we can for us and our loved ones. Thank you for the info and I will bookmark the sites that You and Gig Harbor gave me. I am new to all of this and I can use all the information and help that I can get. This is a wonderful community of people and I was very impressed with every one here in the way that you all are supporting and helping each other. I am relieved and very glad to be on your great forum. Thanks again.
Posted: Saturday, October 5, 2019 1:43 PM
Joined: 10/4/2019
Posts: 6

Alz+, Thank You very much for all of the great ideas  I will give B12 a try right away and wouldn't it be great if it made a good difference. I am under a lot of stress since my wife passed and this wasn't a good time to take the 4 hr personality function test and I know that we will be doing it again in the future. Yoga is a good idea to try and meditation at the same time wouldn't hurt either

My sleeping pattern has been bad for the last four years and I have to use a prescription med for that and from what I understand it is not good for us. Cannabis may be a good alternative especially Indica because it makes a person sleep very well. My speech is a problem every once in a while for the last couple of years and it might help with that also. I have also been thinking about trying CBD oil to help with sleep and anxiety. Anxiety is simply the result of worry and going through what we are there is plenty of that so anything that I can find to help with that I am for it.

I will ask my Doctors about being tested for sleep apnea because I wake up in the morning feeling like I hadn't slept so it is sure worth a try. From what I understand our brain and body heal themselves during sleep.

I do need to set the house up for easier walking and less clutter does make me feel better. I am finding that these days I feel better with less extra things around me to worry about. Less things in the way is a good thing for sure.

Thanks for the warning about posting on Memory space and I will watch what I post. From what I have read so far people with ftd seam to just blurt things out without thinking so that is probably why you may have found a person with that problem.

You have given me some great ideas to work on and I want to thank you for them.

Posted: Monday, October 7, 2019 6:02 AM
Joined: 9/12/2013
Posts: 3560

Boats - 

I want to correct something - I have not been to the Memory People FB group, I just signed up at a few online alz groups - the one where I got told I was nuts and cruel and insane cause I said cannabis helped me so much was just some big group and the guy who hounded me if I told what helped me was a CAREGIVER know it all, need I say the person he took care of was miserable?  according to him. 

Because this was the site where people really saved my %&#@ after being diagnosed and the tone here was more grown up kindness I stayed here.

Lack of sleep is really common, the cannabis puts me to sleep and calms me down. The CBD oil gives me something that allows me to function, I will have hard time getting up, getting dressed, confused. I have the cbd oil on my dresser, forget everyday it is there, once I take it I am out of bed and dressed within 10 minutes. I do not feel high or altered, just find myself walking the dog or words come more easily.

The "anxiety" - not sure if it is anxiety or some other thing happening. Like bees in the gut, I walk around saying "I don't know what's going on" or "what's happening?" and the anti anxiety meds make my muscle weakness worse. The CBD oil stops the quivering gut and I added florastor - a probiotic I need when taking shingles meds or antibiotics - and it seems to calm the gut brain.

If you can manage a year or so there may be a breakthrough in treatments, I feel like the game is going to change soon. If not for me at least for my kids.

welcome here, 24 hours a day. 

came to say insomnia is super common, in my case I gave in and moved to a separate bedroom where i could be up at night and not bother my husband, told myself if I am going to be up every night why not make the most of it? started listening to stanford lectures on youtube and writing. Getting sleep is always great, sometimes eating a snack puts me back to sleep.

find what works and pursue it.

I also lived near a big beautiful warm pool and used to walk there and "swim" which was whatever playing or dancing in the water. Physical exhaustion helped me sleep, last winter I was not able to even walk 1/4 mile to pool. Not once. Thought of it every day and could not do it. Glad I went when I could, was also a place I could chat with people if they wanted.

love and courage

Posted: Monday, October 7, 2019 7:00 PM
Joined: 10/4/2019
Posts: 6


Thanks for letting me know about the site not being the memory one. We run into people sometimes that have a closed mind about cannabis and no matter how much good science there is they don't want to hear it. It's a shame that the person made it hard on you and I would think that the moderator would have stopped it. I wouldn't want that caregiver helping me and I can understand why his patient was miserable. I think that it's very important to have upbeat caring people around and let the know it all's go elsewhere.

I hope you don't mind me asking but is there quite a bit of difference in the way cbd works from different sources? I would think that a dispensary would be better than some of the other places to buy it? It sounds like it works very well for you and I would like to give it a try. I wish that my state had medical cannabis because Indica has been used for years for sleep problems and works very well from what I understand. Someone told me that dispensaries have a sleep formula in pill form that contains thc and they said it works just fine and I would imagine that it would be kinder than the Zolpidem that I use for sleep? I was using Ambien but the benefits would wear off in about a month but so far the Zolpidem is doing ok. Meds work so different from person to person we never know which one is best? Anxiety is a real problem in this society and wears on the body and it is great news that the cbd is helping you and where it is getting you up and going is a real plus.

This site and all of the caring people here is great and I am very happy that I found it also. Unless a person is going through this or helped a LO go through this they will never understand what it's about. As much as I wish that none of us had a need to be here it is great to have the support and understanding from all of you.  We are holding each other up and there is so much to learn here and we all need the support. I have read quite a few post here and learn things all the time. Thanks for reminding me to start using my probiotics again because they do help us to have a healthy gut. A few years ago I was on antibiotics for quite a while and the probiotics saved my gut.

I hope that a cure is coming soon for Alz and FTD. From what I have read it sounds as if they thought that they had a cure for Alz a few years ago but it was causing problems so I guess that means that they are getting closer all the time. 

I know that it is hard on you not being able to get to the pool right now and hope that you will be able to work up to it again but I think it best if we don't beat ourselves up for the things that we can't do anymore.

Wishing You The Best!