I have been avidly reading this site since my husband was diagnosed in January and feel that I know many of you. Of particular interest is Eastern Cedar as we live in the neighboring state of New Hampshire, and I just love Georgepa's descriptions of the English countryside. After many years of visiting my parents in Sussex or Oxford every spring this is my second year without needing to go. We have gone from winter to summer overnight here, so the awakening of one bulb, blossom or tree that lasts months in the UK is taking 2 weeks!
I have such admiration for you all - whether suffering this disease or as caters. You all seem to have such endless patience, and I hope to emulate you as the frustrations mount. All of you have provided such valuable information, and helped us to prepare for what lies down the road.
Very soon after diagnosis he took the driving test, and failed of course. He sat down with a former colleague and spelled out what he wouldn't tolerate as far as intervention when he becomes incapacitated. We have put a handicapped shower in a downstairs room and it is ready to be his bedroom when stairs are no longer possible. The U-step is also ready for days when he feels the need for that.
He started on a Paleo diet after reading Dr Wahl's book about putting her MS into remission - seemingly permanent. It is hard to know if anything helps, because we have no idea what the progression would be without it.
The most significant benefit has come from the prism glasses. It was so frustrating for him not being able to read for most of the day.
We are lucky to be in a small college town with a major medical centre, so have access to an excellent neurologist and neuro ophthalmologist, as well as having many PT and OT programs and an active Aging Resource Center. He is still able to take the bus on occasion.
We are planning to make a trip to New York to see a doctor who infuses Phosphatyl Choline. Has anyone heard of this or have any opinion? It was suggested by a dietician friend as being something that will heal cells, and she put us in touch with the researcher in the field. They have had some success with some conditions apparently. A biologist friend and professor is skeptical, as is our neurologist. I suspect we are grasping at straws, but if J thinks it is worth pursuing I will be the chauffeur!
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Finoni
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Hi, welcome to the best site on the Internet. Just such a shame you have the need for it.
Well done for sounding so positive. That will help you enormously, during the dark days ahead. It DOES keep them at bay, or at least under a bit of control!!! We are all here, for when that doesn't work. Please post all your fears, worries, anger and frustrations, also we want to hear any successes. Because in the main, none of us know each other, it makes it very easy to express yourself, without fear of upsetting anybody. I find it extremely hard to talk to my family, they worry enough about us, without me telling them EXACTLY how and what I am going through.
My husband was diagnoised Sept 13, is still on his feet, most of the time. Although is sporting a very impressive stratch across his backside at the moment!!!
We all spend our time looking for the magic wand. The only one I have found to date, is physio. S goes to a gym class that does multi directional exercises, based on big movements. The majority of the people that attend are suffering from Parkinson's, but it helps S enormously. I can really tell when he hasn't been for a while!
Very interested in this Paleo diet that you have your husband on. Where do I find out about it? Anything is worth a try!
Keep up the positive attitude, try not to get bogged down with what your husband can't do, concentrate on what he can do!!!
Oh Heady, I always enjoy your wise and empathetic posts.
He who has never ventured beyond making a cup of tea, now goes to great lengths every morning concocting a large green sludgy breakfast, consisting of some combination of kale, spinach, avocado, celery, berries or whatever he can find and some liquid - either juice or almond milk. All goes into the bullet blender and ends up as a highly nutritious 'drink'.
The diet is very high in anti-oxidants. 9 cups a day of fruits and veg! (US cups are smaller than UK). 3 cups should be dark leafy vegs, packed. No dairy, no grains - rice and quinoa are fine. He does eat gluten- free bread and cookies sometimes though, and I use brown rice pasta. Lots of fish and meat. A pretty expensive diet, and if your eating days are numbered I am not sure I would be willing to give up many of the foods i love. He loves ice cream, so I buy Coconut Dream ice cream. Oh yes, no soy or beans/peas/peanuts.
Heady, You are wonderful. Every post of yours is so worth reading. It is exactly how I feel about this site. A place where I can talk and hopefully not ruin someone elses day. My boys are tough, don't mind being around dad and seeing his progressive condition. But my daughter is just the opposite. My kids are all in their 20's and though on their own, It is so hard for my baby girl to see her daddy falter in any way. I tell her its ok to talk about it. She tells me she doesn't want to. So I don't push. If anybody has any suggestions on how to help my girl get through this, Give em to me!
Hi AVB, thank you for your kind words! Don't feel wonderful, just a woman in great distress, as she watches her much loved husband deteriorate in front of her and can do NOTHING about it!!!
How you help your children? sorry no idea!!! Wish I did, S's children need a lot of help. Their way is to totally ignore their father and hope it goes away. Totally cruel to S, but what can I do! Sunday, had his daughter, having a go at him, because she couldn't hear him over the computer on FaceTime. No understanding, that he can barely speak anymore! I get so cross! His son has made it extremely clear, that he WILL NOT be helping me, in any shape or form. I don't know what to do. Except loss my cool and tell them their fortune, in no uncertain terms. One day, one day!!!
What stage is your husband? If only in the early stages, then perhaps, your daughter will come around as things get slowly worse. This disease is very slow, so people's reaction doesn't have to be immediate! Give her time.
Bruce has displayed symptoms since 2009. He quit his job in 2011 because of falling. 2012 went to neurologist who said ,"You're getting old" and finally in 2013 was diagnosed (per my suggestion) in 2013. Heady, the words you write help me to identify with your life. I feel your pain and am filled with joy as you help others seek the joy within this disease. I am so sorry that your family is having the same issues as my daughter....a word of wisdom I have not...only to continue to seek a positive perspective. There is so much I want to say but am so tired I cannot find the words except to say goodnight my friend/sister (if I may be so bold) in psp, AVB
Greetings, neighbor! Sorry you have to join, but you're very welcome, anyway. Isn't this site great? So helpful, and such a comfort.
I'm impressed by your proactive approach. I still don't have a properly accessible shower, and it has been an increasing challenge for my guy to get in and out of the VERY awkward setup we have. He doesn't want to hear of my converting a downstairs room to a bedroom. But that will come in time, I suppose.
The prism lenses have not really helped him, and not being able to read bothers him greatly. I'll be very interested to hear of your trip. Good luck!
We have been calling the downstairs room the Man Cave for a while as it has a big TV and a recliner and J likes it because it is not too bright in there. He uses it as his den already and it has been his bedroom for several periods post-back surgery in the past. He has recently started a course for people with Parkinson's and has made a couple of new friends there who drive and can pick him up. Woo hoo!
Welcome Finoni. I too have been following this site for quite a while although without posting. I have been encouraged to write a few more replies recently especially as other people seem to be suffering from very similar problems to ourselves. My husband was diagnosed in 2013 and, although he can stand and walk a bit, he now uses a wheelchair in the house as well as when we are out and about which has saved a few of the falls.
You say that you admire how patient everyone seems but you can be sure that we all have our times of sadness, frustration and despair and I for one am not always patient!
Make the most of what you both feel able to do now as I'm afraid things are bound to get a bit more difficult in the future. However, where there's a will there's a way and D and I are going on holiday to Spain on Saturday (two daughters and two grandchildren are coming as well so there will lots of help and support). I am hoping to be able to do some 'care swapping' so I can spend some time looking after the two small grandsons while the girls look after their Dad for a bit. I know a double buggy is a lot easier to push than a wheelchair so I am looking forward to that!
We haven't found any treatments helpful so D is not on any medication now although I agree that the exercises his physio gives him make a big difference. The medical support we get in the South East of England is good and the Hospice is wonderful.
I was impressed by the care my parents has under NHS, particularly the in home care, though they had nothing like the needs of a PSP patient.
We are trying to squeeze in as much traveling as we can while we can also. We have recently returned from a river cruise. (Amsterdam to Budapest) which was wonderful and manageable. The same room every night and a beautiful scene floating by. We did the least strenuous tour each day, but it wouldn't be an option if you couldn't climb the stairs into a bus at some of the stops.
Have a wonderful time in Spain and enjoy those little ones!
How nice for you and welcome. I find this site great for keeping me sane and the various suggestions posted. My husband was diagnosed just about 8 weeks ago and it seems like a life time. He contracted a UTI which brought him down a lot but fortunately he is doing much better now. Learning how to walk, trying to keep his balance, swallowing issues, etc. A big mess. Mine is royally angry that he won't be able to drive. Vent, suggestions, anything goes
Driving, or should I say stopping driving, I think has been worst part for S. The independence that it takes away is so cruel. How YOU cope? Well that's the 64 thousand dollar question. I stopped S driving, as we thought he had had another stroke, he had a day coming down from a mountain walk and was falling all the time and hurt his arm badly. We were on holiday in South Africa at the time. When we got home the doctors started talking Parkinson's, then obviously PSP was confirmed. One of the first things the consultant asked, was S still driving! He had got use to me ferrying him around by then, so there wasn't the awful YOU MUST STOP! Total relief for me! S's spacial awareness had gone. Had been going for at least 15 years before. The rows over his driving, well, getting into the car use to be a nightmare. How solicitors didn't get involved I'll never know! I think the main reason was, deep down I knew something wasn't right, even from the very first instance that I can remember it happening.
So now, little olde me, gets lumbered with all the driving. I use to just be "drive to the supermarket" driver, to frightened of my own shadow to go any further! Now, I can drive most places. Just come back from two months in South Africa, where I must have driven 3000 miles!
I actually enjoy driving now. Also, it's a great stress reliever! What else can you do, that for how ever long you are in the car, your loved one, can't fall!!!
Oh the relief that brings is immeasurable!!! OK, I now have toilet problems to worry about now, but carefully planned stops "normally" take care of them!!!!!
One thing I have done, is take S somewhere very quiet and off road, industrial estate at Christmas etc., and let him drive for a few minutes, naughty I know. But when we bought my new car, had to sell our old ones and buy something he could get in easily, I just had to let him drive it! I also, found a place in SA, that fitted the bill, so when we went there I always let him drive for 5 minutes. I think the last time proved to him, that driving really was off limits and has now accepted the fact! Like everything with this evil disease, acceptance is slow as well!!! The above is extremely risky, so be careful if you are thinking of trying it!!!! But just the suggestion, might be enough for your husband. I am finding as time goes on, that by suggesting, I will try to facilitate whatever it is he wants to do, keeps him happy. Rather than, sorry you can't do that anymore, which upsets him!!!
Heady you are just like me. I don't like diving and D did all of it, supermarket, long trips you name it. Actually with everything else going on, he is in another rehab center, fortunately much better than the other one which sent him home for just 21 hours with a very serious UTI whch sent him back to the hospital. He is doing well, knows how I feel about driving but with the set back, he is relearning how to walk, move more easily not to mention swallowing. They are saying he can go home on the 27th which seems like years to me. He knows he can't drive anymore but with all of the setbacks I don't think it is on the top of his list at least he hasn't said anything. I hadn't driven for at least 10 years and because of the stress and frustration. I do but still am not i love with it. If I could just settle down some way, I am so tired that all I want to do is sleep. I know it is only 8 weeks since this all started and I am not dealing with it very well. I have to get my head together some way. I can't wait for him to come home.
I know we have said this before. YOU MUST GET SOME SLEEP NOW!!!!! Before D comes out of hospital. You know you will on the go, non-stop, when he is released! Can you arrange for some help for when he does? Even if it's just for a few weeks, until his strength is built back up and you are more use to the role you now have to play! Go to your GP, get some sleeping pills, if you are struggling to sleep. This is so important, I know, I am running on vapours myself!
Give yourself some time to get use to all this. The shock and what you have been through these part weeks, is going to take time to understand. I won't say it's the worst part, that would be lying, but it's probably fairly near the top. We are all travelling down a very, very rough road, you just have learn to look for the smoothest pathway, to get through!!! You will survive, you have no other choice!!!
Hi Heady, I stayed home today and slept since I didn't sleep well. Had to get up 3 times to go potty. I know it is going to be very rough but he will be getting pt, ot and a nurse during the week, prob twice each. I take diazepam now to help me sleep and promise I will sleep when he does during the day. They are saying he will go home on the 27th or before. His swallowing issue has been resolved and he can eat regular food. I can see te diff everyday in how much stronger he has gotten. That UTI knocked him for a loop. I have to get a smaller wheelchair since the one I have I can't handle. Lets see 165 plus chair and 110 me going down hill or up doesn't work to well. I won't say I am not scared, I am, but I am a survivor. We got through loosing our daughter when she was 20 and will get through this one way or another. Thank you for all of your help. Without all of you I would be a basket case. Don't know who to go to for extra help but I will make some calls.
Hi Heady sounds as though S and my wife loved driving, for her to give up the licence was a major step. She did it before PSP diagnosis due to a couple of near misses in town. It knocked her confidence and I wish I had thought about empty car parks but did not. She has accepted it now 5 years later but I know she still hankers after the steering wheel but she likes long drives around the locality and visiting sites we remember from happier times.
Hello Audry...It is true the beginning of the disease is a shocker, I'd never heard of it until I started plugging symptoms into google and my daughter's friend said that it sounded like Parkinsons. When I got informed I was able to suggest to the Neurologist what it might be, he did a visual gaze test and and his face just sunk. H'ed only had one other patient with this problem in his career. And, when we finally got other 'help', they did not know what to do for B either. Being a Special Ed teacher as I am, I have made daily plans for academic, fine and gross motor activities. But even still I have learned many things from this site, and I have only been on it about a month! When it gets hard and the why us's come rushing at you, feel free ask us why....no answers per se but alot of "i know how you feel's" and I can't tell you how much that has helped me. From my doctor and other specialists knowing nothing to strangers knowing everything. Wow...well weclome
Well he is home abirke and it has been quite a day. They changed most of his meds so do not have what I thought he would need. The VA, which is where he gets his meds, is closed of course for the weekend and Monday will be closed as well. Since he has no other prescription coverage, am having to pay full price. I could cry. To boot he feels nauseous, from what I haven't a clue. Made him one of his favorite dinners and that is when he felt sick. Won't chew on ice and keeps on walking around during the day without his walker with me yelling at him most of the day. They have his meds spread out all day, should be interesting trying to keep up with them. Well he needs some now, so off I go.
I'm sorry you had to pay full price for D's meds. Lesson learned: Remember to fill up on meds before the holidays! between insurances I paid $142.00 amonth for my drugs....difficult to say the least! Oh and maybe keep meals light while D transitions to and from other drugs......
abirke, I would have but they changed the dose on two, now have 4 bottles of the wrong one and added a new one. Being a holiday and the weekend can not contact the VA until Tuesday gave me no choices at all.
Welcome to the family because that's what it is . I have received so much support here and would not have got through some difficult times without it .Good advice from carers and sufferers alike - some laughs where you least expect it and a very broad shoulder to cry on when things get tough .
George stopped driving a long time ago, sometimes I say as a joke do you want to drive, and he laughs, the other day my daughter was going to drive my car and I got in the back with the boys, they said who is going to drive the car, I said grandad they said really, grandad was laughing. I don't mind driving, I never did like George's driving. Have a good day everyone and Audrey hope Don comes home on the 27th and you can relax and enjoy your time together, and just take one day at a time, it will come around quick enough, we're has this year gone already? We are going to the Cotswolds next week all the family and my brother and his wife are coming over from Cyprus, so I am really looking forward to going, and my lovely baby brother here for 2 weeks. Hugs to you all and welcome to you new peopke this is a wonderful site, look forward to all the messages. Yvonne xxxxxxxxx
Yvonnne, He is home now. They let him go home earlier ssince he is doing so well. It has been quite day since they changed a lot of his meds and the VA is closed, so having to pay full price at the pharmacy, yikes. He still thinks he can drive and when I informed him he couldn't he got very upset. Gotta, go med time for him now and me and the dog. Audrey xoxoxo
Welcome Finoni - I lived in Princeton for ten years, so I know well the life in a small college town. I miss it every day. (and I lived in the UK 14 years prior to that) I came back in September to help look after my dad here in Belgium - needless to say, nothing is the same as it was 24 years ago! I found a little part time job that's keeping me sane My dad stopped driving in 2009 because of what they thought was an epileptic fit, but I am secretly convinced that was the start of PSP. I used to get him in and out of the car for very slow walks with his walker in the woods, his idea of heaven, but it's become too hard, so we get special transport for any trips. He sleeps downstairs, gets carers in every day to wash and bandage his very swollen legs. If anyone has any suggestions for those except waterpills - doctors can't advise anything except more exercise which, seen he's in a wheelchair most of the time, is pretty pointless. I got him a new computer because the old one was so slow, he would sometimes fall asleep while the damn thing was churning. He wondered if it was still 'worth while' so I squashed that idea - YES! So now he's happy it's all going so quickly he can actually finish an edit or an email.
Sorry to go on and on... I don't post too much on here, any of my worries.. because I think he sometimes reads as well and I don't want him to be worried about me, on top of everything he's going through.
There are many things you can try and I generally suggest you try them. However, you must be cautious and do your homework on-line. Most neurologists will tell you that many things you read about for PSP have NOT had adequate trials. You need LARGE trial groups that contain some "normal" people as well as PSP patients. I recommend that you Google the name of the treatment and see what pops up. This will give you a good feel for it's value. Of course there is no "silver bullet" treatment or medication for PSP. If there were we would all know about it. Also, PSP is NOT a one-size-fits-all disease which means what works for one patient may NOT work for another. Good luck!! Jimbo
Good advice. Thank you. Sure enough phosphatidylcholine has not even been tried for Parkinson's as far as I can tell, but has for Alzheimer's with little or no effect. However it seems that it can do no harm, so I think J will still want to give it a try.
Wow ! We live in a college town and I can't get some of the things you have described and I have been asking for. Namely prism glasses. B cannot see his food or anything below his horizon from 5 feet in toward him. Did you have to use a neuroopthamologist to get the glasses? And do give an account of the Paleo diet and any effects, good or bad, you have noticed that were not there before the diet. I have never heard of Phosphatyl Choline infusion(?) be fully aware of what it is and does before using....I don't think I need to tell you that lol.... but do keep us abreast on whats happening there as well. Have a great day
Also wanted to mention re eating - we went to a PSP/MSA support group in Boston last weekend and a woman there mentioned that using a mirror at meal times has helped her husband find his mouth with his fork. I wonder if there is a way of rigging a mirror to help a PSP person see their plate? I have heard that putting it up on a box can work. With the prism glasses we haven't needed that yet.
OOh we just tried it! Thank you Finoni! it was rather haphazard but with more thought I think we could rig something. Like maybe a hinge fastened to a base so that the tongue of the hinge sticks out and thus a mirror could be placed on the tongue and be moved using the hinge.... It would look like...._V_ if you could find a hinge sturdy enough to remain in one position and be able to be moved with ease HMMMM...ok engineers lets get a move on haha
I've got It Finoni! I went to a 2d hand store bought the base of a standing mirror (a small vanity) Replaced the mirror with some new glass and Whalah! My husband is able to see his food for the first time in MONTHS! How simple! Thank you Thankyou! Figuring out how to "see" with the mirror is the new challenge. He did very well using a fork to push the food onto the spoon. I am sure with practice he will master as much as he can! I am so excited I can hardly sleep hahaha
The prism prescription came from a regular optician. They are expensive and of course we break them regularly and are often misplaced so we now have two pairs. Apparently there is a clear film that can adhere to the lens to add an extra layer of prism when eyesight worsens.
Yesterday I drove the 10 hour round trip to see the functional medicine doc who believes that phosphetdylcholine will help any condition caused by cellular dysfunction due to toxins in the blood. (My understanding at any rate!). Blood was taken to be sent to John's Hopkins University for special testing of all the fats in the body. Apparently there is a super special lab in Devon that can test for all the toxins in the body through DNA, but they have to use it through a clinic in Germany. And the phosphatylcholine they use comes from Switzerland. Does this sound totally whacky!? The health center we went to is just a little office off the beaten path in a place called Valley Cottage near the Hudson River outside New York City. Everything super- expensive. All our doc and scientist friends think it's a scam, but she was very convincing. She was a very reputable oncologist before being hooked on functional medicine ie looking at each person as an individual rather than a condition.
She did suggest changes to J's diet. No raw spinach (surprise) as in can cause inflammation, lots more protein in his diet and lots and lots of fat. Fat seems to be the new health food ( at least all the good oils) but she stressed that the brain needs both saturated and unsaturated fat. It binds with the phosphotodylcholine in the blood to make it more efficient. Virtually no carbs allowed.
She spent 2 hours explaining everything and when she knows the results of the blood test she will determine if PC will help and how much and whether by capsule or infusion. I'm guessing we'll give it a try. It can't hurt the body - just the bank account!
Wow sounds interesting......infusion sounds scary. I have long heard of high fat diets. I have epilepsy and though am no on a high fat/low carb or Ketogenic diet I do believe its a good thing...and it may be psychological but I crave meat more than I do candy. At least one thing about this procedure, you are getting international care! Good luck with this thing again please keep us abreast as to how its going...you may be on a breakthrough!
I was wondering if you had found out more about Phosphatylchoine. My husband (dx 2012) has been getting lethicin in his morning "mocha" for a long while now and recently started taking citioline. I really cannot tell if either is doing any good, but his progression is very slow. And yesterday I found this article from the Linus Pauling Institute and thought you might be interested. lpi.oregonstate.edu/mic/oth...
We are still waiting for the results of the myriad of unusual blood tests to inform the plan for possible infusion of phosphatidylcholine. J is a physician who has conducted many clinical trials himself and is very suspicious of possible 'snake oil' treatments. He is convinced that he would be able to tell very quickly (?hours/days ) if the PC was having a positive effect. I'm not so sure and there is always the problem if not knowing what the progression of the PSP would be without it. I'll let you know if and when treatment commences. Thanks for the link. It is interesting to see the studies that have been done on mice. We have not found that anywhere before.
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