Hello world! This is the title of the first sample blog the WordPress team leaves on the site of new bloggers. Boring huh? Today, you’d better get used to it ‘cos that’s about all I can find inside my head for my blog, and I’m not feeling like much of a writer at all. Such is life, and no one even needs to forgive me as this is my life, and does not need apologising for. This morning was spent departing from Hailsham at 7.30am after a fairly rugged night of little sleep, then a very early start to be ready for breakfast by 7am. Then with the help of Jayne the GPS (also known as Jayne the marriage saver!), we set off for the Hertz rental car office at Marble Arch in London. It looked easy, until Jayne missed a few road works, which had us in traffic for much longer than we anticipated, made us late in getting the hire car back, and kept my head spinning for just over four hours. The traffic started out busy, and quickly became much busier. Of course, this is no great drama, and even getting a little off track a few times is not world shattering, especially with Jayne in tow, but the noise, the constant motion of the surrounding cars and trucks, the road works and other signs, Jayne’s constant drone of instructions, all had me feeling like I was inside a Gravitron. You know, one of those awful rides at the Annual Show, the one where you get in, stand leaning against the backwards sloping wall, and then it spins rapidly pinning you to the walls through the force of gravity until your head spins and you feel sick, or get sick. The head spin of dementia is not dissimilar to the Gravitron experience. To top this off, I had a minor close call with another car again this afternoon and am feeling less and less confident to walk out and about in traffic, even with my husband. I hope being on holidays and not being able to stick to my usually focused regular routines, the Neuro physiotherapy and other holistic interventions, and the fact we are in a lot of new and unfamiliar places, is the reason things seem a bit worse. It does seem though that I am losing a little insight, something discussed with DH earlier today, who has confirmed this. Hopefully the process of writing about what is happening helps me retain some insight; to write about it, I have to think very hard, I have to refer to my notes, and I have to refer to my back up brain (DH), and then I have a hard copy of what has been going on, inside and outside of my head. And on a funny note to finish this blog, my DH has just walked in after going out to get some batteries and has been offered a job in Jessop’s Camera Store in Hammersmith London as a retail assistant, as he did such a good job of explaining to some little old lady about how to use a camera, the difference between a manual or automatic one, and how the advantages of Photoshop make a lot of the manual features obsolete!!! Charles, are you ready to take over the family business full-time yet?? Or maybe you want the job in the camera shop??
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I’m a 64 years old male. Over the past few years I’ve had multiple Ischemic Lacunar & Thrombosis Strokes, diagnosed with Complex Partial Seizure Disorders & Simple Partial Seizure Disorder, white brain matter disease, CSVD (Cerebral Small Vessel Disease), Cerebrovascular Disease, I have Chronic dizziness, balance issues (falling down due to my balance issues) and headaches. Over the past few months I noticed some new neurological symptoms like short term memory loss, but I related it to all the strokes I’ve had because that’s what my neurologist told me last year. But then I began noticing other symptoms like communication, apathy, mood swings, depression, judgement, confusion, not being able to follow a story line watching movies, tv shows or reading books, Roaming/insomnia, vision issues, and sleep disorders. I was able to identify eleven in total. So I finally told my family and our doctor a little over a month ago. He had me take a 2-part test, the results came back that the likihood of me having dementia and the cause is Alzheimer’s disease is fairly high. So my doctor placed me on Donepezil 5mg medication. It’s one of four medications in the United States that are FDA approved specifically for Alzheimer’s disease. I’ve now been referred to a Neurologist that specializes in dementia and they will begin the process of elimination. In the meantime a couple or so months ago something new started happening. If I was having a conversation with someone and during that conversation I perceived the person I was talking to became bored, didn’t want to hear me talk anymore, because I have a tendency to repeat myself or forget the topic of my original conversation, so through their body language I now perceive they are done listening to me, inside my brain/head I begin thinking things like, did I do something wrong, was I offensive then my other dementia symptoms kicked in like confusion, depression. At the exact same time this is going on Gravitron is slowly starting to spin me in one direction. It’s starts off at a 1 and slowly works it’s way through a 2, 3, 4, 5, 6 7, 8 all the way until it’s spinning so fast my body is frozen against the wall of the Gravitron ride, but it’s even worse, not matter how fast it’s going in one direction my head is spinning in the opposite direction. Now here comes the fun part that’s only happened 3 times. If I’m in a sort of half awake half sleep state and something scares me the Gravitron syndrome (that’s what I call it) doesn’t start at a 1 and work slowly upwards, it’s immediately is at around a 9 or 10 and quickly goes to a 13 or 15, to where I’m screaming, I want it out of my head, I even tried jumping off my son’s balcony. So if Gravitron is spinning at 10,000 miles per hour in one direction my head is spinning at 20,000 miles per hour in the opposite direction. My wife and I spoke to a woman who just moved into our apartment complex. I knew she works in the healthcare industry. I told her everything I wrote in this comment section and I asked her if she ever heard of anyone having my condition. She said in all the years she’s worked with dementia patients, only 2. They gave the exact details word for word what I did.
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I’m really glad you are seeing a neurologist Jon… it certainly sounds like you’re have a rough ride. Take care. Kate
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Kate, thank you so much for not only replying to me but for your blog, for being courageous enough to share with the whole world your most private places. How I was able to find your site was because of the Gravitron. I call it the “GRAVITRON SYNDROME.” I don’t know what else to call it. For me it all began a few months back. What would happen is, I would have a conversation with let’s say my wife, and due to my symptoms of communication I’d want to make sure I wasn’t being offensive or anything like that. But during our conversation if I perceived that my wife became bored or heard enough of what I had to say through her body language, my dementia symptoms would kick in and around the same time the Gravitron ride would slowly begin to spin, I would literally be on the ride spinning while my head is spinning in the opposite direction and I’d be thinking did I say the wrong thing, was I offensive, did I talk to long, I should have not said anything at all, etc and this would be playing over and over and over in my head and at the same time the Gravitron ride would be going faster and faster and faster and my head would be going twice as fast in the opposite direction. So it would start off at a 1 and climb to maybe and 8 I think. Well it stayed like that for months, then one early morning around 3:00 and my wife and I were staying at our sons house. I had gotten up and went into the kitchen, the light from the microwave above the stove was on. I was still in that half awake half asleep state when all of a sudden my son’s girlfriend turned on the bright kitchen light, it’s scared me so bad that the Gravitron began immediately at like a 10 and went up to a 13. I went outside on their balcony and was talking to myself, I did everything I could think of to calm myself down, I literally wanted to jump off the balcony to get this out of my head. It’s only happened like that one other time and it was worse. I was talking to a healthcare professional that moved into our apartment complex and I told her about it. She’s worked exclusively with dementia patients for a number of years. She said she wanted to listen to my stories closely because for her it was important. Her name, I think it’s Ashley. Ashley said in all her years of experience she’s only had 2 patient’s that’s told her in detail the exact same stories I told her. I’m not outside looking at myself on the ride I’m actually on the Gravitron ride, all my senses are experiencing this ride. Ashley said both patients had dementia. I can’t find anywhere else that anyone has or is going through this.
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Hi Jon, Apologies for the delayed reply. I’ve been travelling to much, and not here very often! The ‘gravitron’ experience, or syndrome as you call it feels quite real to me, sort of like spinning out of control some of the time, inside my head. Many I have talked to with dementia speak of similar exeriences, to mine and yours as listed above, but I don’t recall anyone else referring to it as being like you are inside a gravitron. Some of my blogs are so old, it is always interesting to reread them, as often I have forgotten writing them! Anyway, take care, and find ways to reduce the impact of what is happening if you can. Or, when I cna’t reduce or change what is happening, I usually work to find strategies to manage it, emotionally and in terms of seeing these types of ‘symptoms’ as disabilities. When all else fails, I try and find the humour in it, as that is often the only way my husband (back up brain) and I get through this roller coaster experience called dementia!
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Kate, is there any medication that seems to help? I am on anxiety meds but I don’t like taking them because I don’t want to lay in bed all day sleeping. My youngest son has a pitbull and for some unknown reason he knows there’s something wrong with me and whenever the Gravitron syndrome takes place he (Spot) will come over and sit next to me and live on me until it stops. We are thinking about moving in with him and his family because right now my family want me better what ever it takes.
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Hi Jon, apologies for my delayed reply! I’ve been travelling a lot, and my personal blog has been on the back burner! I don’t take any drugs, but use Transcendental Medication and Mindfulness very successfully to manage anxiety, stress and also very severe chronic neuropathic pain. Drugs always means for me at least, not being able to function cognitively at all, plus dosages constantly having to be increased once you get used to it, and therefore ultimately, addiction. I’ve tried almost everything, and am allergic to many drugs except Fentanyl, and do not ever wish to go back onto that.
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No apologies I’m so thankful I have one person, imagine that, one person out of over 7-billion people on this planet earth, that I can actually communicate with that UNDERSTANDS. This past weekend we spent a few days at our youngest sons home. Everyone was gone, I was on the patio balcony and had the trifecta, I stood up Gravitron came, I fell on the floor had a bad seizure then I passed out. I came awake but couldn’t move cause it takes me a few hours after my seizure. My son’s pitbull Spot got me inside the house, imagine that as well. I think it was later on that afternoon my son asked me, not how I’m doing or the expected questions, he asks me, “why do you keep on saying you have dementia?” I said, “I know I haven’t been LEGALLY DIAGNOSED by a team of Neurologists, but maybe it’s easier then trying to explain to everyone every time one of these 11 symptoms happen why they happen when me myself don’t know why they happen, maybe it’s because all 11 symptoms I have are all classic dementia symptoms, maybe because when I wrote them down and gave these new neurological symptoms to my doctor he immediately gave me a 2 part test that is supposed to be pretty accurate in verifying dementia and the cause is Alzheimer’s disease, maybe it’s because after I took the 2-part test I must of gotten the gold prize because my doctor immediately placed me on Donepezil, which is one of four medications approved by the FDA in the United States for Alzheimer’s disease, maybe it’s because I have this thing called Gravitron which before I didn’t even have a name for it, that would happen inside my head that’s been going on for months, how long, I don’t know, what I do know it’s getting worse and so are some of my symptoms which doesn’t help my other neurological disorders like seizures, chronic dizziness, balance issues, falling down due to my balance issues and severe headaches that NEVER GO AWAY, it seems like everybody forgot about that, maybe it’s because its easier then just telling people just what I just told you Michael, I know I haven’t seen the Neurologist yet, not my fault, it’s been 2 months since my doctor sent in my referral, your mother finally got off her butt after a month and called Medicare and now I’m waiting on her but she will again blame me because she’s the victim in all this. Maybe Michael it’s just easier to say one word or don’t say anything at all, he said no we don’t want that, yes you do, this is your girlfriend talking not you and I’m sick of it, you don’t have a clue what my life was like before all this happened, I noticed symptoms months ago but never told anyone, especially you guys my family, my wife and sons, I already knew what reaction I would get. Well son I’m done, I’m done trying to explain what I can’t explain. Then Kate I read your post from 2013 called “Walking In My Shoes” or something like that and when I read it, it all came full circle for me. I don’t know what other Neurological hurdles you had before this, I’ve had tons and tons let’s just say that, I think I wrote you a list with all I’ve gone through. My wife and family couldn’t deal with that. My daughter in law, she’s more like my own daughter to me now, she got it and noticed symptoms in me over 3 years ago when we moved in with our son and her. I guess those symptoms got worse. Anyway, yesterday I’m still thinking about my conversation with our youngest son Michael and I go into the kitchen yesterday and my wife has a problem breathing through her nose so I asked her if she was having a breathing issues with her nose and she starts laughing and says you asked me that and I already told you, what the heck is wrong with you, are you deaf or something? And she walked away laughing at me. We had just been notified that we were approved to rent a house for me, my wife, our son Michael, his girlfriend and her 2 teenage kids, which are fine by the way. It’s a 6-bedroom house 2-story with a Jack and Jill 2-bedroom connected with our bathroom downstairs. I told my wife if it wasn’t for Spot the Pitbull, I would not even be doing this because that dog deserves a life, one he’s never had. Anyway I have a tendency to go down rabbit holes. When my wife did that to me I finally realized that even after I get diagnosed its not going to matter because after all my other neurological disorders and being diagnosed nothing changed. I am 64-years old, I attempted suicide in 2011 or 2012, I was unsuccessful, it wasn’t some cry for help. I remember a few weeks after all that happened I was talking to a friend on the phone and He asked me about it so I told him and he said yeah I’ve had my gun next to me on the bed and I thought about it before, I said yeah but I pulled the trigger, and he repeated himself and I asked him if he pulled the trigger he said heck no, I said calmly, Wes, I pulled the trigger, I didn’t use a gun but I took over 85 pain meds and drove to a secluded place and told nobody, I passed out but woke up and said great you can’t even kill yourself correct. I thought that my wife the one closer to me and kids would understand but they don’t, I’ve begged for her to join a support group anything but she’s too busy watching her favorite tv reality shows on her phone. I said maybe Sunday I thought we could hang out, she said yeah right, what hanging out with means what sitting on the couch? I get it now.
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Oh gosh… I’m so sorry you’re going through this, and seemingly so alone. It never fails to make me want to cry when I hear or read other people’s families are uncaring. Many of mine too except for my wonderful husband and sons. Plus about 5 other blood relatives, including two aunts in their 90’s. Is there a support group in your area where you can share with people who may be able to understand, or who can be there for you? Starting your own blog, even a private one might be really helpful and also I find it healing. I started with a private one which I still occasionally write on. Anyway, sending healings hugs your way Jon. 🌎🌸
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So what I’ve come to realize, come full circle is my health issues has never been an issue with me, I never complain, not pity party, no nothing. In the last 2 years my wife broke her foot twice, just recently was the second time, and out for about 6 weeks. I took care of everything, every need she had without her everything asking. She likes the clothes she’s going to wear the next day ironed, so I took advantage of my insomnia and roaming, I would have her clothes ironed and ready for her every morning, get her coffee, anything I could think of without her having to ask. I think I got a couple thank you for clothes. I moved my clothes from where they were together a smaller area so she could have easier access to pick out her clothes, underwear things like that. I never saw it as a burden, it was a delight it brought joy to my heart. For her it’s the opposite, yes she will do what I ask most of the time, but little things like knock on the bathroom door because I have to go to the bathroom and the look on her face when she opens the door and it’s me. It’s never anyone else but me. No that’s all saved up for me. I want to be loved, accepted and supported with all my physical conditions, my human faults and failures, when the symptoms manifest not to be judged. But I finally realized that will never happen, not in my lifetime. Thanks for listening Kate.
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More healing virtual hugs for you 🤗
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Hi Kate. Thank you for your warm and kind words. I finally say my wife down and told her that she needs to seriously do some real heart searching inside herself. Maybe she just doesn’t have what it takes to be my caregiver and if not then we need to make other arrangements. Anyway that’s not the reason for my message to you. The last couple times I had my Gravitron experience, when the spinning completely slowed down I began to have hallucinations. They were like short films/movies playing in my head, not sound, in color, crystal clear, they were not x-rated or violent, i don’t remember none of the short films, or the people. Each one would last a very short time but every time a new one played I would become more tired, I could feel my body getting weaker so by the time they stopped I was completely wore out, I was stumbling around like I was drunk. Did this happen to you or do you know anyone who’s gone through it? I feel like I’m going crazy.
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Hi Jon, I think you need to see your doctor. There are many different types of dementias, and other conditions as well that might be causing this. I’ve forgotten if you’ve been formally diagnosed with dementia, sorry. Lewy Body Dementia does cause hallucinations and some others do also. Some days dementia does make one feel crazy… I definitely recommend getting some professional help if you can. I’ll try and remember to look at your other comments for more context… remind me if I forget. Take care
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