@@categurl3967 Thank you!

@@carollangenback4526 I’m sorry to hear about your husband. Scott is still chugging along. Most of the recognizable decline has been slow for a few years now. Thankfully. I believe a big difference for him is medication for pain. He has had chronic pain most of his adult life. Scott is now 61 years old. He consistently wears a pain patch which we replace with a new one after 3 days. The patch only helps keep his pain levels down for two of the three days, and is worn off by the third day. This is when the dementia rears its ugly head the most. I believe Scott wouldn’t be here right now if it weren’t for the pain patches. He is hardly able to function once it wears off. I have noticed in my research that many people with FTD have pain issues. Back pain, leg pain, or body pain of some sort. Every person with FTD is so different, but thankfully, this is working for my husband for now.

@scottkellyblades8485 My husband never complains of any type of pain. I brought it up to his neroligst, he said the ftd effects everyone differently.

@@kyleross8122 Thank you Kyle. Scott was diagnosed by a neuropsychologist who would run 4 hour testings with Scott. Our family doctor originally sent him to a neurologist, and the neurologist sent him to the neuropsychologist. The neuropsychologist does the study of the brain. Scott didn’t get the diagnosis right away. It took a couple of years. Insurance would only pay for one testing per year so we had to wait a year before getting a second test. It has now been 8 years and I believe has become more common in younger people. It’s possible doctors are able to diagnose in a more timely manner than 8 years ago.

@@scottkellyblades8485 Hey there, thanks for the response. I'm in a similar situation where I had neurospsych testing done about 2 years go and passed, was diagnosed w depression (even though I didn't become depressed until after my symptoms started), but now I'm near the point of being unable to do my job (analyst, having the most severe problems is with writing/communicating, but memory/thinking is getting difficult now also) and am currently scoring in the MCI range on the MMSE. Similar to Scott, my early symptoms was just forgetting. names, words, etc. that I know, even if I said the name/word 1 second ago. Really frustrating getting a diagnosis. 39 now. I have a 2 year follow up Neuropsych test in a week to see if there are any changes

@@kyleross8122 Scott has diagnosis of depression as well. Is there anyone close to you who sees the changes in you also? When Scott was tested, I was given an extensive questionnaire to complete to help the neuropsych test. The questions were geared toward dementia symptoms and helped with the diagnosis. I hope this next test will help them pinpoint the reason for your cognitive issues. Keep us posted if possible.

We haven’t been able to do another video for awhile but, amazingly, Scott is still chugging along. He continues to be able to stay at home by himself each day while I’m working. He is still mobile and still communicates very well. He does sleep more and more though.

Scott accepted it but did question whether he had dementia or not. I would tell him not to concern himself with whether he did or not and if he didn’t have it we would eventually find out. He knew he was unable to come up with words he needed and such. He knew, but I think he was in and out of denial. It’s very hard on the caregiver (you) when they deny it and don’t believe it. Give him time and it won’t matter to him anymore. Does your husband have PPA (trouble with speech or mobility) or BV (behavioral variant - anger and accusing)? I know the BV is very difficult. Fortunately my husband hasn’t had much of BV, but he does take a medication that helps with the anger.

My husband has BV. He has gotten angry some. He has always been a kind, compassionate man (retired United Methodist pastor), so seeing anger is unusual for me. There’s been nothing too extreme yet. He’s always been stubborn but it’s way worse now. His neurologist suggested an anti-depressant but he refused. We may visit that again at our next appointment. His seems at this point to be mostly apathy. Although recently he’s been calling people from former congregations and talking to them. I’m sure they are wondering why. We are older than you and Scott at 68 but had planned to do some traveling. Life certainly takes some twists and turns, doesn’t it? Thanks for checking in again! Jeannie

Jeanie, It’s not an easy path but you will grow stronger and stronger as the journey continues. Never forget that your mood is his mood. I have learned to exhibit gentleness and love even during times I’m irritated and frustrated. Scott sees me happy, even when I’m not happy. You will find other outlets for your negative emotions such as time with friends or in support group meeting with others who understand what you are going through. There is a virtual group I attend through zoom which meets the last Wednesday of each month and my friends are amazing. Also a Facebook private group for those who care for their spouse with FTD called “FTD Spouse”. God bless you as you travel this journey! Hugs!

We are both doing well. Everything seems to be level and the same. Makes me happy.

That is wonderful, your prayers have been answered. Hopefully Scott is chugging along and still able to clean the kitchen!!! Phil

@@Peaceandlove358 😆😂😁 Thank you so much!

I want to tell you, just as the Alzheimer’s association told me, that you can do this. You’ve got this. Yes, life is changed forever now. Unfortunately, it will never be the same. But God is by your side and your new life will need to depend on Him for everything. Our hardest challenge is not knowing… what does tomorrow hold? Next month? Next year… but God knows and He loves us and will take care of us. I believe you will find new experiences and hobbies that you can enjoy. They may be things you never expected. My husband has also learned to be content in his new life. Surround yourself around those who show you love and who care. Those who don’t feel they have to correct you constantly - you may have to educate your circle of people. Big hugs to you Phil!! My heart goes out to you. I will pray for you!

Glad to hear from you anytime. You have brought warmth and hope to my heart. I must lose the anger and embrace what has been given. Your blessings mean so much, and I bless both of you in turn. Phil.

Hi Kelly hope you and Scott are doing ok. Feels like a rough day for me. Woke up in the night with rattling random thoughts that feel like a swarm of bees. Absolutely exhausted today. Hoping that my Neurology appointment in November gives some pointers to what is going on! Meanwhile going to get some therapy to relieve some burden. Sorry to bother, but need the reach out at the moment while I don’t have a diagnosis. Bless you and stay well.

@@Peaceandlove358 Hi Phil, we are hoping your neurologist will pinpoint the problem and hopefully will be able to treat the “rattling of random thoughts” for you. Maybe a medication to help with that. This has to be very frustrating for you. Blessings to you Phil.

Hi Phil, Yes, Scott is still doing better than I ever expected. Miraculously, he is still able to stay by himself each day while I work. We are coming up to 8 years from his diagnosis. Thank you for your inquiry!

That is amazing and a wonderful miracle. I am commencing a difficult journey in the UK. I have Problems multi tasking bursts of Adrenalin confusion insomnia etc. Here you get pushed into the mental health system and told you have anxiety. I am having to finance scans and the next neurologist appointment to try and find out what is going on! The UK health system is broken and not fit for purpose. Did Scott get the scans he needed? Meanwhile I keep chugging along. Love Phil

@@Peaceandlove358 Here in the US, we are first sent to a neurologist, who forwards us to a neuropsychologist who does the actual testing to determine the problem. The neuropsychologist is the doctor who studies the brain. I took Scott to them and he spent 4 hours there going through the “testing”. I was not allowed to stay and observe the testing, so I have no idea what it consisted of. But the doctor determined there was dementia and that it leaned toward Frontotemporal. He then had a baseline. He forwarded us to a psychiatrist to manage behaviors, such as depression and anger, etc. We visited regularly for at least one year and they were able to add input as time went by. The doctors would communicate with each other to help further support the determined diagnosis. Scott met with the neuropsychologist once a year for 3 years. God bless you as you go through this journey! I hope you have people around you to support you. Keep us posted if you can.

Thank you!

Your comment is very encouraging! Thank you so much for the message. We are doing well for now. Scott is still able to stay at home while I work each day. He is doing really well. Thanks to God!

C3 😂I will ❤0❤​@@scottkellyblades8485

Patience is key for you as a caregiver for your wife. We have to always remind ourselves that we can’t fix this. And remember her concept of time is different than yours. When she’s speaking what seems like 10 minutes of waiting for her to get those words out, only seems like 1 minute to her. And always remember to “Just Breathe”. I’m sorry you two are having to go through this. It’s not an easy journey. Don’t forget to take care of yourself.

@@scottkellyblades8485 yes I will. I also have a 19 year old daughter that helps but has less patient then I do. So sometimes I have to tell too slow down.

Sorry there has been no videos lately. It’s more difficult for me to get Scott to be okay with me doing them. He is still going strong. He recently had to have another stent added to his collection, this time in the widow maker. He now has 11 stints to help keep his heart going. He is still mobile and communication is still pretty much the same. I can’t believe how well he has done.

@@scottkellyblades8485 thank you for taking the time to post an update! Lots of positive thoughts and well wishes to you both, and your precious dogs! Happy 2023!!🥰🐶

Three years for us. God bless you my friend!! (BTW, we both are lovers of Colorado as well 😃)

Thank you, Chris, for your loving words of encouragement. I’m glad you came across our video. God is so good no matter our circumstances in life. Trusting Him is key. Hugs to you!

Thank you David! We are so sorry to hear about your sister!

Thank you for your words of encouragement. God bless you and your partner! I’m so glad you have each other!

Is it possible that you may make a more recent video ?. Soon my partner/ carer will pursue her life . Unfortunately she doesn’t need to be weighed down by caring for me full time so I’ve decided to seek help from our supportive living program so I can survive without her and she can pursue her normal life .

@@II-ug3uo I hope to make more videos with Scott, but lately he has not wanted to do them. I will definitely keep trying. Thank you for sharing this part of your story. I understand wanting someone you love to be able to move on. This would be a hard decision. I don’t know if this is the desire of hers or of yours, but I would only say, please give her the opportunity to care for you if she so wishes to do so. At least for as long as she can do it easily. This is a blessing a person shouldn’t miss out on. It’s not easy at all, but oh, what a blessing for both people involved. Big hugs and keep watching. I will try to get more videos even if they have to be short ones.

Thank you from both of us and you’re very welcome too!!

I’m so sorry about your father. Scott does not take anything for FTD. From what I understand there is nothing to slow the progress of this type of dementia. Some doctors have prescribed Aricept which helps with Alzheimer’s dementia, but my understanding is that it is not helpful with FTD. Scott does take several meds though. For other ailments he has mostly. One very important Med for him (and for others with ftd I have noticed) is antidepressant. Scott saw a psychiatrist the first year of his diagnosis which helped so much with getting psychological medication straight. I would go with him to every appointment. Though this is not a mental disorder it does act like one and the psyc medications can help ease the symptoms. Scott had become very non social as well at the beginning. He would also almost cling to me in public as though I was his protector. But as time has gone by this has stopped. For Scott, the antidepressant is key for helping with these types of behaviors.

Thank you so much mam for your reply, even my father takes aricept, but it has only been prescribed to him a few days ago, my father was diagnosed in August but not for dementia rather for Bipolar disorder with psychosis, and a doc gave him olanzapine 15 BD, mirtazpine 30 OD and divalproex 500 OD, to which my father responded very well and was back to his normal activities but not as before for more than a month, during which I got engaged, but then the doc started to decrease the dosage of the medication and the symptoms came back and even stronger to which we got admitted in a local psychiatric hospital, there they gave my father inj sernace and promethazine, but my dad showed no improvement to that, afterwards he was put back on the previous meds and showed improvement to some extent, it was in the hospital when a lady doc saw my fathers MRI and said that he has atrophy in the frontotemporal region and that it could be dementia, although the MRI report just says age related MILD small vessel ischemic white matter changes hyperintensites. Anyways your husband seems to be in good shape and I wish that he stays in a good shape forever and live a healthy and long life with you, bdw what antidepressants meds does he take?

How can Kelly be reached for an update on Scott & their situation

He was diagnosed in 2016. I think he started having signs about 4 to5 years prior.

Yes!! Amen. We will get through it. Thank you!