FND or DLB

Hi everyone

7 years ago I was diagnosed with dementia with Lewy bodies, recently this was changed to FND, and I have been told that 6 weeks of residential rehab is what I need to function normally again. I had to stop work, driving, and keeping my shotgun. Anyone else been here?

Dave

16 Replies

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  • Hi Dave, was reading up on your original diagnosis. Did you have an MRI...If so it sounds like that would have been the basis of your original diagnosis as well as physical exam. It is possible because of this illness that you have developed what they call FND. Might be worth following up at a larger hospital or clinic for evaluation with a fresh set of eyes if this is at all possible. If not I would encourage you to talk with the Dr. again for a better explanation of why the original diagnosis is now overthrown. Also you might suggest that the FND came out of the Lewey body dementia, as it sounds like it may have. Also if your insurance pays for it it might be beneficial to try the 6 week rehab. I wasnt able to drive for two years because of the movement disorder, and still drive very little. It is very hard especially for a man I think. My Dad lost his ability to drive because of poor eye sight, it was so hard for him, and very sad to watch. Saying a prayer for you today. Cathy

  • Hello Cathy

    I have had just about every scan worth mentioning, DATscan, PETscan, SPECTscan, MRI, pet and spect may be the same thing. Following radiography reports and symptoms, I was diagnosed with Lewy body dementia and Parkinson's disease, I asked for a more senior opinion because my consultant had been replaced and I seemed to have more knowledge than him! I was referred to a professor in another county who saw me for 10 minutes after his registrar had taken notes, he didn't even sit down! Some time later after reviewing all of my notes he changed my diagnosis and suggested that rehab could restore my memory etc, I was devastated because I had lost my job as a paediatric staff nurse in 2009 on ill health retirement.

    Best wishes

    Dave

  • Hi Dave from another Dave, I was diagnosed with FND about 5 years ago now. At the time there was a query about Lewey Body Disease. Lewey Body can deteriorate very quickly and after further tests (Polysomnography) I seemed to have REM Sleeep Disorder. Not a pleasant condition in its own right but certainly better than Lewey Body Disease. I hope your rehab has a positive effect. My main issue is fatigue which effects every part of my life. To finish on a positive note, I can still function most days and have a reasonable quality of life.

    i too had to give up work but got my driving licence back for the next 3 years. I have diplopia which was a surprise to me but is managable.

    I think with FND we need to look at what we can do/achieve and not the negatives otherwise that big dark pit sucks us in.

    Lewey Body disease is a diagnosis none of us want, sounds terrible but take the change of diagnoses as a good thing, I did.

    Dave

  • Hello Dave

    The difficult thing with Lewy body is the way the symptoms can be on and off within hours, days, weeks and months, so you can't plan ahead for anything, fall with tedious frequency the result being knocking out or breaking teeth, I've had to have a complete clearance of what was left. I have lost the sight in one eye and have 10% tunnel vision in the other, I've lost the hearing in one ear. If rehab can help me just a bit it would be great.

  • Do you mean removal of your remaining teeth, my goodness thats dreadful. I hear a lot of similarities. My hearing right side now is very poor and vision remains an issue. I suppose they are putting your falls down to seizures, non epileptic which are quite common with FND. Take my hat off to you for keeping going. Has any support network been put in place for you and your family??

    Take any help you can but decide to do other things yourself, no matter how small, that just lets you feel you are keeping some control. Keep social contacts to avoid isolation. Depending where you are there may be groups like Deaf Blind Uk who can help and advise or have information leaflets to read or download. I put the link below.

    deafblind.org.uk/

    Dave

  • Hi Dave

    I was down to about 12 teeth, the rest being either knocked out or broken, I had no opposing teeth so couldn't bite or chew, my gp referred me to oral surgery where the consultant said I had to have a clearance then dentures to avoid constant infections.

    Dave

  • Rough. Rehab can only help, as long as the Physio understand FND. I think it was New Zealand who have a residential 6 week support for those diagnosed with FND. Could be wrong there. I do remember quite some time ago posting a link to a young teacher who could not control her limbs but exercise and eventually running brought her control back. Quite amazing to see. I will have a quick look again and see if I can find it.

    Can't see it at the minute but this may help, one of the FND Hope videos

    vimeo.com/214313890

    Take care

    Dave

  • Thanks Dave

    It's a bit tricky because I am in Cornwall but the professor that sorts the rehab is about 90 miles away, and because of my current symptoms I'm a wanderer and hallucinate constantly, I have delusions and have spent a whole night with a mouse trapped under a bowl until my carer arrived and discovered that I had been keeping a sock captive all night! The physio that takes care of me in Cornwall has a lot of FND experience, but I doubt she'll want to come with me.

    Dave

  • I take it for granted that you had a polysomnography carried out ( sleep study with loads of wires etc)

    I have REM disorder and act out some of my dreams and wake up exhausted every morning. I was worse when They had me on 120mg of Duloxatine daily. Don't ask me why but the meds really did not do much for me and were extremely difficult to come off. The other thing that helped medication wise was clonazapam, not in a high dose.

    I AM NOT ADVOCATING COMING OFF ANY OF YOUR MEDICATION WITHOUT ADVICE. Just sharing what helped me personally.

    On the practical side, as you have so limited sight and hearing poor I wonder would you qualify for a Dog, the Hearing Dog that would be a companion for you and assist in different ways. Just a thought.

    Good luck with your physio and keep us all up to speed with how you get on.

    Dave

  • Hi Dave

    I have 4 jack russells so a dog might be out, I haven't had any form of testing or anything yet, as my diagnosis was only changed recently, my wife has had spine problems for more than 20 years, 3 surgeries, tens, dorsal nerve stimulator implanted, and 4 times the recommended dose of morphine, tramadol, pregabalin, amitriptyline plus various other pain relievers, then our 24 year old son was diagnosed with a rare liver disorder, never drank smoked or took drugs, he has constant hepatic pain but he isn't allowed pain relief! He can't work on the say so of his consultant, he played league football but that had to stop.

    Dave

  • Goodness Dave, you and your family have been through too much in this short life here on earth. I am so sorry. The other Dave was right on with keeping a positive attitude as much as you can. This life can knock us down but cannot snatch our spirit. I was so sorry to read all that you endure and go through. I do not believe most of what you have experienced is FND by any stretch. They need to look further. I suffer from terrible pain, not able to sleep much. Many other things along the way they have diagnosed as neurological so am thankful they did look further. I am not classified as FND. But I do suffer from many of the things that those on this board do, so I know it is a neurological issue that is yet undiagnosed as being such really. I am so glad when I hear of those that have been helped by rehab or therapy. My body will not take any excess activities, it shuts down completely. Cant even walk a block anymore, but so thankful I can still walk at all, although truely a tortoise would me in a race, I focus on what I can do when I can do it. Yesterday could barely make it to the kitchen, today already did the dishes, small victories I celebrate, and always thank God for each day I have whether it be good or difficult, I can always do something, even for this day if its pray for another. Today my prayers go to you and to the countless affected by this hurricane here in the states. God bless you and each on this board, Cathy :-)

  • Thanks Cathy, I find it very upsetting when I see victims of nature, and it puts my problems into perspective. My wife has endured so much pain for more than 20 years, but she is philosophical and says that there are people who are much worse off than she is, especially when I was nursing sick babies and perhaps a little one was diagnosed with cancer or cerebral palsy or whatever, she really felt for the parents.

    Kind regards

    Dave

  • Ok, no more dogs might just be a little overload having more. LOL. I had thought that you were possibly on your own and with most chronic conditions not a good place to be.

    It is so strange that my wife too has had spinal chronic pain for years and been through many of the treatments you mention. Spooky.

    Very sorry to hear about your Son. I am sure you feel guilty that you cannot do more for the family but it is what it is. You didn;t make it happen this way. Try not to burn yourself out by being everything to everyone it just can't be done. Support each other where you can and PACE YOUR DAY and I know by your posts that you care deeply for those around you and it must be putting enormous pressure on you emotionally.

    The reason I mentioned the sleep study is that if they thought you had Lewey Body Disease your sleep pattern would be all over the place and they may have wanted to see if the brains electrical activity was abnormal. Something maybe worth mentioning. Lack of replenishing sleep is as good as torture, in fact sleep deprivation is used to break people during interrogation.

    Anyway good luck on the FND journey and most of us do improve with time.

    Dave

  • Miranda Licence from Pittsworth, near Toowoomba. Her article was on ABC, produced by her uncle Jeff Licence.

    open.abc.net.au/explore/114378

    There are in-hospital clinics in various places around the world - UK, US, Brisbane Australia.

  • I have been there for 5 years, I have a brill doctor and have been seeing a councillor for 3 years, I have not been able to drive, or work or do anything that a responsible adult can do- and of course its demoralising, I have been in rehab for 4 months, and it is really worth it, it has helped me a lot, I am very lucky to have received the treatment I have, but I still have FND, after all this they tell me that it may be with me for the rest of my life, so I must go with the flow and get used to it, the docs can take away the pain, but it is so hard to live with. So know where you are coming from, and yes, they will take away your license for your shotguns, at least until they think you are better. I am so sorry.

  • There was no way I would endanger anyone, be that with the gun or a car, or as a babies nurse where I might make a drug error, but it's been a real wake up call.

    Regards

    Dave

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