I haven't been posting for some time as I became ill myself; but am getting well. This is so hard for me to ask or explain, but I have often found a wealth of information on here from so many of you, so here goes. So sis went to see a naturopath (against the advice of her neuro., but hey she was looking for a cure). Tried three months of treatments and all she lost was her money. However during this time, the naturopath convinced her that there are certain things and only certain things that she may eat, because according to her; PSP is caused entirely by diet only. She is so convinced of this that she will eat nothing but what this woman recommended. I am not sure if this is a combination of mental health issues, the PSP, or just a control issue. There is nothing we eat that she will eat. Mostly she drinks smoothies, (made with coconut oil, flax seed and a few blueberries) with walnuts, rice cakes and the odd egg thrown in. Absolutely everything in sis's words is bad! She picks apart every label. We can't go out to eat. She's taken to telling people (who are eating normally and enjoying their food) that they deserve to be ill! We've seen the neuro, dieticians, mental health specialists and so on who have chatted with her about a balanced diet and enjoying her food. She's a tiny lady to begin with; and all that is happening now is that she is losing weight which she can ill afford to lose. This is driving us all batty!
Anyone else experienced something like this with a family member with PSP? Any and all responses appreciated. It's really sad, because she was always a person who took really good care of herself....but this is just crazy. None of us seem able to reach her.....
Sorry this is such a rant, but every day we talk about food at length. Great length! Every single meal. No swallowing issues yet; it just seems that she can't let go of what this naturopath said.........
Thanks so much,
Adrianna
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She sure jumped on that bandwagon as so many do ~ with both feet!!!! How does it make her feel? Does she have good energy?
My husband had a huge spell with charging anything and everything we didn't need. He convinced me he had everything under control - things got pretty ugly around here then PSPofficially showed up😐
Thanks for both of your posts aliciamq. This is an ugly disease. One of the worst I have seen. I am afraid that soon she won't be eating anything. Today she heard from a self proclaimed health expert that milk and olive oil are bad, so guess what?? The saddest thing is that she has no swallowing issues (she was just assessed) and she could be eating anything she desired, but everything is pretty much "bad" in her books. Just heartbreaking. I guess I am to the point where it doesn't matter whether it is a serious mental health issue or the PSP. She just doesn't seem to realize or care what she is doing to herself and no one seems able to reach her....the dieticians etc., put up all kinds of positive posters about eating for enjoyment's sake and wellness. Four or five specialists later and we are no further ahead....
I wonder to what degree adhering to the diet gives her a sense of control, a sense she might be able to beat the illness? If this is the case then it will be a strong motivator to continue with the restricted diet.
I can think of three possible ways that might get her to consider change.
1 Visit a more sensible naturopath.
2 Get on some drug trials for the illness, or find find another way of 'beating the illness'.
3 Reading "The Clever Guts Diet" by Michael Mosely which has plenty of recipes and is fsar more sensible!I believe, he is one of the big names in Naturopathy. His recommendations are far more sensible. I can send you an electronic copy just so you can 'try before you buy.' P.M me and I will email it to you.
I suspect one of the issues is that folk with PSP and CBD can become a little inflexible with their thinking.
Hi Kevin I don't know why I didn't see this post first. Mea culpa! I will pm you. I would really like to have a preliminary look at that electronic copy. There are no drug trials close by for which she can be referred. She goes for therapeutic massage and to see a chiro now; which is very good. She does her exercises some days. The dietician, mental health professional, neurologist, and her GP have all tried to reason with her with no measurable results. Naturopathy falls under no specific legislation, so there is no regulatory body....
I can't even begin to express our feelings about our anger towards this naturopath....who has only suggested more treatments at a higher cost!
Maybe this is just a phase?? I just don't know what to think anymore...
I will be in touch in a day or so
Best of regards,
Adrianna
Desperate people will do desperate things. It sounds like she is trying to control the disease. I think I read somewhere cutting down on meat was possibly a good idea. There really isn’t any way to truly know.
I went off the deep end with food when I was around 30. For about 20 years I would think about everything I ate. When I got cancer at 52 I realized it simply didn’t matter what I ate. Whatever was going to happen was going to happen.
Thanks for your reply Jeff. Health wise, I've been in a similar situation as you; and I eat what I like; although I definitely could afford to lose a few pounds. The very worst thing for me was a very stressful desk job which I left a few months ago. My blood pressure dropped back down to normal within a month or so. This PSP is just so frustrating, but I tend to think like you; what will be will be...we cannot always find answers. A generic ketogenic diet is definitely not the answer, plus she even went for some weird IV treatments with this naturopath. There is no regulatory body that we can talk to about this....all we keep saying is that if this ketogenic diet really worked, everyone with PSP would be doing it. I am caught between thinking it it a control thing and then sometimes I think it is how the PSP is affecting her brain. Honestly, I just don't know....
Oh so true...I still find it hard to resist the "healthy lifestyle" preaching...yet both hubby and I controlled our diets re meat, sugar, alcohol, never doing drugs or smoking etc etc ....and he still got CBD..
Life is so unfair. We've all seen people who've lived the life of Riley live to a ripe old age, and seen people who do everything right die young. There is just no rhyme nor reason. So very sad....
Sending hugs and thank you for your response raincitygirl....
That is so true my mum drank everyday and started smoking when she was 25 had a poor diet but she she died just aftet Christmas this year she would been 84 in March ! My dad is 86 next month and he's still going strong driving drinking not the same time though I hope. I don't think it makes any difference what you do if you if you're going to get something you're going to get it nothing can change that the only thing I can say I've done wrong is left my first husband and maybe had a glass of wine too many occasionally. I hope you make your sister see sense start to eat properly again why she can. Jxx
Thanks so much for your response Mamapiggle. I'm like you...I think so much of what happens to us is related to our genetics more than anything else. It seems that some people can do everything wrong, and cruise through life; while others can do everything right, and end up with many health struggles. I guess my philosophy is every day is a new day; but it gets so frustrating watching and listening to same old every day and watching her lose so much weight. I guess we will just have to see how this plays out. The saddest thing is when and if she becomes unable to eat solid food, that she has spent this time not enjoying meals with us and her food....
Is it worth explaining to that Naturopath what is happening and asking her if she were prepared to meet with your Sister and increase the spectrum of foods and the calorie count?
I think she needs to own some of the harm she has done and make repairs.
If she were not prepared to do so I would threaten to report her to her professional body.
Best to you
Kevin
PS - I think it should be a free couple of sessions too.
Kevin, I agree with you--all she offered was more sessions and trying something else! That was one thing we were able to talk sis out of....but as I mentioned to Jeff166, sis even let this woman do a series of IV fluid treatments! There is no regulatory body to report her to, unfortunately. The ketogenic diet was not tailored to her specific needs at all (so big or small...everyone gets the same dietary advice). I can't even describe the insanity of it. I guess in my own mind (and in the mind of our family); now is the time for her to really be enjoying whatever she likes; she's heard that from every professional as well. We all get absolutely nowhere and she continues to lose weight. Most discouraging.
I send my best regards to you and Liz. Thanks so much for being a pillar and a post.
It is scary. Believe me, every time I have ever been on a drip; I have reached up to the IV pole and read the ingredients on the IV bag, because mistakes do get made. I think it is fair to say that most of us would never consider allowing anyone but a medical professional perform a procedure. It speaks to real desperation for sure and maybe something else??
Thank you for your response Kevin. Best wishes to you and your beloved Liz.
Hi Marie. No clinical trials in sight here....unfortunately. We can't even offer her that and there are none close by in the U.S. or the rest of Canada. That would definitely be worth a try, and then maybe she would refocus??
Gosh what a challenge - agree with Kevin’s suggestions
My husband became obsessed with his diet within a few months of diagnosis we had literally boxes of protein supplements he ordered from the USA arriving every week, started on the coconut oil etc it lasted nearly year - though to do this day he maintains high coconut oil intake, he gained rather than
Lost weight though!! It gradually eased but it was immensely frustrating ! His obsessions seem a trifling in comparison to what you are dealing with so I do feel for you. Like most things with PSP it will be a phase which will
Likely pass but what damage it is doing in the interim is of concern.
Love Tippy
Ps sorry to hear you have been unwell - hope things improve for you too
Hi Tippy So happy to have a response from you. It does seem as though she becomes obsessed with different things. I would say her interest in money has waned; unless it is for books and articles on "bad food" and there is certainly no end to those. This "phase" has been going on for at least six months now....it's so frustrating that she won't go out for a meal, or even try a bit of what we are eating. Yes, I am feeling much better, thanks. Looking forward to some lake time in the next few weeks. I hope you are well....
Hi Adrianna, hubby also has obsessive behaviour in fact it was one of the first symptoms, he became adamant he wanted a 4x4 automatic car, in the states that would be normal but not here in rural france. And he did everything to get one, even exchanged his Harley which was the only thing of value he had for a ford explorer (american version), we can't even sell it now and I can't drive it as it guzzles petrol. So it's just sitting losing money as it has to be insured ! This illness has a lot to answer for !
Food wise he's not too bad but has lost the notion of cost so I do most shopping on my own but when I do take him with me the bill is usually doubled.
Is there no way you could get your sis interested in a hobby to divert her attention ? Drawing, painting or even adult colouring books . Hubby watches lots of videos on youtube about painting techniques and his bedroom is full of all his painting supplies, mostly bought second hand at car boot sales. luckily he can't order online, he always refused to have a bank card (phew !). He doesn't actually paint much but he likes having his things around him. He also has lots of musical instruments which he doesn't play but they comfort him.
Thanks Dawn. She has always been pretty controlling, and you know; sometimes I feel like we are being played?? It's like she is trying to get even with us because we aren't the ones who got diagnosed with this vicious disease. She was at one time a very talented musician and artist. She has no interest in anything now. Nothing...she says she is waiting to die. She talks some days about assisted suicide and how we would be better off without her; although I think this is mostly to get a reaction out of us. I think she has seen every specialist imaginable and they all leave indicating that they feel she is unreachable, because every suggestion is met with a "but" or a "no" from her...
I guess we will just take each day as it comes, because what else is there to do??
I don't know of anything more frustrating than an eating disorder which it sounds like this has turned into. But, who can blame her? As I understand it, most eating disorders are about controlling SOMETHING when they have something else that they can't control. I don't know if seeing an eating disorder specialist (counselor) would help or not, but it might be worth a try.
Maybe if you back off a little for a time, she will start to see what it is doing to her. It must be hard watching someone with a progressive illness like PSP wasting what precious little good time they have left making themselves miserable. I hope you find something that works for your sister.
Thank you so much, Pat. If she wasn't losing weight (which she can ill afford to lose, that would be one thing); but today she ran across someone else in the alternative health field who told her not to drink milk or use olive oil...so that's the new thing. I told her today that she will end up on IV fluids if she doesn't eat; because she will get so weak. It's just so damn sad and frustrating. Some of the professionals she has seen have indicated that they feel they cannot reach her...maybe that is what we have to accept.
Is this a way of punishing you because she needs to find a way of expressing anger about the illness, with someone safe?
I went through a few years of this with my Liz. A lot of the time I had doubts that it was even anger. I thought it must just be me. It was anger, as time went on it became more obvious.
As you might have seen Liz re-started citalopram and it has relaxed her and the old warm lovely lady is back.
Might that help with your sister? If she were more relaxed she might just ease off a bit. CBD oil is the other thing to consider in that department?
Thank you for your response, Kevin. She is on Citalopram (30 mg per day) and CBD oil. The other interesting thing is that for the past few years her blood pressure has been low (70/40, and so on). That is something that seems very odd to me. It's actually been lower. She's only allowed so much of the CBD oil because of the blood pressure situation. That low blood pressure seems out of whack with PSP, or is it??
You may be dealing with a fixedness of thinking related to PSP. Which may be piggybacking on previous predilections. e.g. a premorbid character trait of obsessiveness? Now really entrenched with slowed processing and a fixedness of thinking from PSP?
I do have one thing left in my bag, light hypnotism where she dialogues with her body and finds out what it wants. Seriously... I think you might call it guided fantasy over your part of the world. But she sounds so closed I doubt it would work.
I do hope I haven't wasted your time going around the houses.
I think in your shoes I would have knocked down all the walls in the house... by banging my head on them.
You are amazing to stick with her care needs.
Oh, forgot the BP... Liz's BP has steadily climbed with PSP. Oh, and the research I have seen on CBD oil lowering BP was using 600mg of CBD... Now that's 100 times the dose we are talking about. Have you done a BP reading before and after?
Warmly
Kevin
P.S Liz was a little grumpy today... 6mg of CBD oil and her face realaxed and she settled back more peacefully.
Oh thank you once again for your response, Kevin. I am not sure of the CBD dose she is on...I will have to check that out. I am glad you brought that up....I have mentioned increasing it to her; but the bp issues come up. I don't know if the Citalopram is helping or not. If it is helping, I can't imagine what it would be like without it. One bright spot is that she is seeing another neurologist for a second opinion (perhaps he may have some suggestions; fingers crossed).
So happy the CBD is helping Liz. Anything that makes one's life easier, is definitely most worthwhile. Best wishes to you both
Dear Adrianna, This must be very scarey for you. I am so glad that you feel safe enough to rant about it on this site, as it will help you and you have had some good replies. I do agree that maybe it is her way of trying to take control but the result sounds as if food has become a battle field. Out of interest has she been to Eating Disorders as it sounds as if it is a mental health disorder mixed up, or as a result of PSP ? They may be able to help.
However, one of the things I learnt many years ago is that we cannot control anyone's life apart from our own and maybe it is time to stop talking about it and let her do what she wants even if that is awful. Kevin's suggestion of "The Clever Guts Diet" sounds as if it could help and maybe she would be willing to read it if given to her as a gift and not for discussion.
I had to put this into practice [albeit not straight away mind you] when my husband started to find eating harder. I was trying to give him healthy food at 'mealtimes'. These times were becoming very fraught and it came to a head one day when he told me to stop treating him like a child 'he would eat when he wanted to and what he wanted to'. Once I stepped back and took note of what he had said mealtimes were no longer a problem and became much more enjoyable for both of us again, even if they were longwinded, due to his slowness, and because he might decide at 3 in the morning that it was food time!
Sadly PSP and CBD are progressive diseases without a 'getting better' prognosis at the end. My first husband died of cancer, and was told from the start that there was nothing they could do for him and I know that it was impossible to understand how he really felt about this any more than I could with my husband who died in in 2019 and the reason that I am on this site. What we have to try to do as 'on lookers' is to try to help the person affected to value the time that they have with us and accept that we will all make mistakes as we are human. I wrote a poem way back in 1995 which I will post after this reply I think.
Take care and look after yourself. Big hug. AliBee
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