I was diagnosed at the age of 36 with dementia with psychotic features due to head trauma. Has anyone else on here developed dementia due to head trauma? And if so, is yours considered progressive? I am working my way through SSDI to try to get benefits as I have been fighting my way through the injury and a host of other things and been declared disabled from doctors and the state I live in, just not on a federal level.
My GP finally read my neuropsych evaluation this week after I have been swapped around to numerous doctors and landed back in his lap finally to oversee who I need to be seeing. He is not happy, but the positive is he realizes I do have brain damage and am just not a chronic patient because I like to go to doctors (NOT!). It is frustrating dealing with so many different people and feel like all I do is go in circles. Now 3 years after my initial accident and several in between it is like I am being looked at as someone that needs treatment like 3 years ago....geez. Anyway, I would be really curious to see how many folks have dementia, not alzheimers, although apparently this is where it leads.
Thanks so much,
Alzheimer's is just one form of Dementia, not a separate disease. Your Dementia was caused by a terrible accident, so it may not follow the usual steps. You are very yung to be in this dilemma - but by your very lucid writing and explaining, you obviously do not have the kind of Dementia that most of us here deal with, loss of memory, inability to find the right word, delusions, etc. Is the doctor handling your case a neurologist? I wonder if the damage done by your head trauma might be reversible. Do you eat a very healthy diet, take vitamins, etc? Are you able to exercsie? I know you have already seen numerous doctors, and it must be terribly upsetting when someone implies there is not really anything wrong. Still I wish for you that you can find one who really sees a chance to help you! Are you taking any anti-dementia drugs? Do you have anyone who is helping you with the everyday problems of life? I wish you well and will pray for you.
Martha H, thank you for your kind reply. I think prayer is underrated, personally I believe prayer has been the rope that is holding us all together right now. I have short term memory loss, aphasia that is most noticeable as the day goes on, arthritis through out my body, fibromyalgia, myofascial pain, thyroid disease (well managed), and chronic pain from nerve damage and head injury as well as multiple back/spine surgeries. I am what they call a high functioning traumatic brain injury. I am very fortunate, but am waiting to get another full work up by a medical group that will oversee all my medication and hopefully add in a dementia type medication. Right now I am being treated for all the side effects: anxiety, depression, cognitive deficits, chronic pain and muscle spasms. A neurologist is treating me as well as a neuropsych, neurosurgeon as needed, finished with a pain clinic as they have done all they can do, am waiting to get into a mental health center for universal care of all problems, and no, unfortunately the damage I have sustained is not reversible. I also have auditory and some visual hallucinations. Nothing too off the wall, just irritating more than anything. I do take vitamins and try to eat right when I remember to eat. I lately have been on my own a lot, my son is visiting with his dad and my roommate is about to be a grandmother, so I don't do as well when others aren't around to assist me in maintaining a regular schedule. I do well with my son and roommate to fill in my sentences, understand what I am trying to say or do, and explain things that don't seem to make sense. I write much better than I can communicate verbally. I am thankful that I have good friends, family that although out of state they keep close tabs, and a teenage son that has been so patient and understanding most of the time (hey, he's a teenager...lol). My biggest worry is the progression of the dementia. I took care of my grandmother after my mother, an only child died. My grandmother spent 4 years in my care and it was truly sad to see her decline due to alzheimers and vascular dementia. I just don't want to be so young and have my son have to go through that with me. He has lost his grandmother, and both great grandmothers, as well as his great great grandmother since he was 7 (he is 15 now). My neuropsychologist has told me we can probably wait until I get approved for disability and I get medicare to retest me to get an idea of any progression. He says that he will probably retest me over a 3 year period in order to evaluate signs of progressions and how quickly things change with me. That could be a while as my hearing has been postponed indefinitely because of backlog. SIGH..... Long post, but wanted to clarify if possible. Thanks for reading!
You've been through the mill haven't you? Your a brave woman, and it's good to see your being proactive in your own care even if the doctors won't play! LOL
Mim, my MIL was diagnosed with 'dementia' at the age of 72, and her's progressed rapidly. With every doctor we saw (we had to see a few to get the same result because certain family members wouldn't believe the diagnoses) they all asked the same thing "has she had a trauma to the head?"
Since she had been in various car accidents (FIL not being the safest driver in the world lol) it was a possibility, and one of the doctors truly believed that the last car accident in 1991 probably set her off on a very very slow course of action. She would have been 61 at that stage. By the time it was noticeable, (71-72) nobody thought about the car accidents until asked!
Sadly, her's progressed rapidly from then on (72+), she lost her words, nouns first, verbs then adjectives, she hallucinated eventually just before placing her in a nursing home.
I think, what you need to consider is a 'plan of action'. If possible, when you know of times you are going to be on your own, place up signs, get used to them NOW. Perhaps organise an In Home Care Worker to come in and help you in times of need or as a regular thing (especially if you get on disability!!). The sooner things become 'routine' and regular for you, as you decline (who knows when) the routine is already established and you won't be apt to refuse the help.
Signage does help: "Toilet" with a picture of a toilet. Sounds pre-school but it does work. "Bedroom" with a picture of a bed. It's all there to stimulate your brain and activate it when needed. Visual cues work best for any kind of dementia, young or old.
Whatever you do, you must now take steps to keep yourself SAFE. Those around you may not notice a decline when it happens because it's gradual and can be written off too easily.
I will pray for you also
... your loved one hasn't forgotten you ... the DISEASE doesn't remember you
Thank you Gemini1961, I appreciate the prayers and suggestions. I use post it notes and a day calendar to keep myself informed. Fortunately, I used to be a teacher, so I should not have any trouble make labeled signs -) it will be like when I student taught and had young kids...LOL. I guess so long as I communicate well with those I live with about how I am doing and get all the medical, and occupational and pysical therapy I need I will be alright. I thank you for your info and background dealing with this, and suggestions on what to do to get ready. There is nothing I cannot handle with God on my side!
My DH was diagnosed at 51 with Pick's disease which is another form of dementia. After visits to his MD, a neuropsych and and psychologist, they all asked the same thing. Whether or not he had taken a blow to the head. He was an All American football player and played high school and college ball, so yes, I would say he had a few blows to the head. I believe there were other factors that contributed to his illness but won't go into those. The fact was, he developed it at a very young age and unfortunately, died last May. After reading about all your dealings with doctors and SSDI I couldn't believe how long it's taken for you to receive disability. Possibly your state works differently than ours but all I had to do was take all of my DH's neuropsych tests along with a letter from his neurologist to SS and they pretty much approved him first time around. It took 6 months to start receiving checks but there wasn't the run around you've experienced. It must be so hard for you to try and do all this on your own. His illness took about 5 years from start to finish so it went pretty fast and I'm still trying to deal with my loss but I wish you the best and hope things work out for you. Please start to put a plan in action about how you will be cared for so that your young son won't have to deal with all that. It sounds like you have a support system with family and friends and don' be afraid to ask for help.
Hi Janie, I am so sorry for your loss. I am going to do everything I can to fight this and am having friends search for studies available for people that fit my situation. Who knows, I may get a break and start on the "miracle" medication or procedure to halt the progression. I have learned to accept my limitations (well most days that is), and am just ready to have to no longer fight and struggle to get help so I can just focus on my son and close circle of friends and family and not have to waste the time I have. I keep hearing of a making a health plan. I am assuming that means making plans for what to do as I decline. I want to see my son go to college and medical school, but from what I read on here 10 years is the higher end of the time limit from diagnosis. I am setting my goal higher, heck it can't hurt and it gives me something to aim for. My mom held back stage 4 lung cancer to make sure I got my divorce and moved in to my first home on my own, for my brother to finish med school and almost made it to the wedding of my little sister. She missed that by 3 weeks, but promised to be the breeze. Sure enough, as she was being honored at the ceremony outside, a great breeze blew through the wedding group..so neat. I hope that I am in the group of demented, but aware of it. We can all joke about it now, and laugh over the nonsense words I make up when I can't find the right one. The funny part is now my friends and family sprinkle my wordisms into their own speech. What a hoot! I think what has really held up my hearing is the workman's comp sent me to a neuropsych 3 years ago and although the test results are almost identical, her personal impressions of me just being depressed and not sleeping enough and the fact I was in litigation was making me this way. Now, that was her opinion based on her feelings, not the test results. Of course I got denied immediately. When I had another neuropsych do the testing and more (he has about 6 degrees dealing with this and forensics), he got consistent testing results, but actually compared the data, the 30+ point drop in IQ and great loss of short term memory and swiss cheese with long term, the symptoms I apparently exhibit and don't even realize it and he gave me an 18 page diagnoses and where the damage was and what it was affecting. I think I made a mistake with the lawyer. He is the one who told me take what I could from wc and just get out from under them and get state disability (I was a teacher) and apply for SSD. He is also my SSD lawyer, and I have not been too impressed with how his office keeps up. I am seriously considering requesting a copy of my file to see exactly what information they have. My most recent denial stated that at my age I could be retrained to do some kind of light work. Duh, well good luck with that one! I tend to put the bleach bottle in the refrigerator and pour milk into the washer. Go figure! Well thanks again, and once again I have written a chapter. Take care!
With your great faith and with advances in medical science coming in every day, I think you will make it beyond the 10 years you gave yourself --- how about 20? or maybe even a complete cure? That's what you deserve!
Bless you Martha! From your lips to God's ears....lol. I believe that everything happens for a reason, usually to learn from. It is strange the things I remember so clearly and the things I have allowed to slide off my brain and some that were just wiped out. I hope that taking care of my grandmother and studying up so much on her illness that is has better prepared me for what may come my way. I also think it helped that my son has learned at a young age that we are all on loan to one another on this earth, that there is no promise of tomorrow for anyone of us. While I will continue to do all I can to slow or stop progression if I am indeed progressing (that is up to several interpretations depending on who you ask), I also know that I will try very hard to skip the denial stage and plan ahead. I am a terrible procrastinator and I seem to be even worse of one now. I try to work on that, but sometimes I forget....hee hee. I hopw you had a great weekend!
But in the mean time....
Have you made sure that you have durable POA and medical POA made out to whoever is going to need to have it? Are/is someone also on your checking and savings accounts? While you still are in what they consider your "right" mind...not that anyone who has raised a teenage has a right mind! That amone qualifies you for a medal! The POAs are important to be taken care of now. But your probably have those done...
I personally would look for a good lawyer that deals with not only diasabilities, but also with elder care..unfortunately, what you are dealing with is what we see and deal with with our elders. You being the anomoly because of your age, you just need the kindergarten portion rather than the elder portion of the package, so to speak. But someone who specializes in the elder care, because that is the issues, medical and financial and legain wilse.
And never give up hope that the worst is all there is. Be prepared for the worst but hope for the best. Miracles do happen. I have a good friend that the doctor's said, without a doubt, that he only had months to live. That was in 1999. Guess what.... he proved them wrong. Stay positive and look for the miracles.
I wish for you a miracle and welcome to the board....
Thank you DGabriel and I Bake and Pray (love that name by the way!)! I actually do NOT have a POA, I think the mental health place they are sending me to on Aug. 20 might bring it up, but yes, I need to do all of that. It amazes me that no one has even thought to get me started on all this since my head tried to crack the cement. This is the kind of stuff I need to know. I guess there is a book such as Dementia for Dummies out there that might even have the steps to follow and the forms to use. Wow, maybe I have either thought up a great idea or they actually have this.
I know I can't give up, it simply is not an option as my son needs me. I am the rock in his life as he is in mine. I now have to figure out who to give POA to. That is a little trickier to do than I realized as I have started thinking on it. My family lives out of state, but my best friend is also my roommate so location is good. I guess I need to talk it over with her and my family to figure out what is best. It is a lot to ask of anyone. I know having been on the other side in 2000. I hope everyone has a great week. I am spending most of this week getting ready for a vacation with my brother and his family. This should make for an interesting time! Mim Gregg