I have a question about PSP & nutrition; see below.

[JudyJ]

I saw my Neuro this week. I've always been a poor eater, no excuses. I asked him for nutritional advice specific to PSP. He had none. Also went on to say there is no established correlation between eating a good diet or eating a poor one when it comes to PSP. Could've knocked me over with a feather on that one because it defies common sense. Feedback, please.

[JudyJ]

For clarification, my ? to him wasn't about whether nutrition or lack of it plays a part in causing PSP, but rather, if good nutrition and/or certain nutritional foods could play a part in stabilizing/slowing down PSP. His answer was no.

[Hidden]

Unfortunately this the issue-there is no evidence, but that is not to say PSP research is going to uncover something in the future. My mum has always eaten REALLY well even through all her bad patches and has always eaten healthy foods-dad was a late diabetic and all through the years they ate brown bread, low fat,lots of vitamins etc. She still eats well even though her swallowing is badly affected now. She just takes longer-a sandwich can take an hour, as can a roast dinner. The staff are always impressed with what mum can manage given her issues. In fact eating is her 2nd best quality of life, visitors being her first. She has had PSP for approx 6 years, the last 2 being a relatively fast decline.She recently dropped into end stage literally overnight with UTI. Mum is 77

[kay1 in reply to Hidden]

seems to be on a par with FRank, he does need help with eating and drinking now, but only for the past couple of months, I always declared Frank had the slow form of PSP, but there seems to be quite a rapid change now. You just about think you have every sussed out, and PSP comes up and bites you on the bum. He is 90!!

[kay1]

I just wish it could be an answer, but PSP just grinds away regardless. Sorry Judy x

[Hidden]

Hi Kay, it seems to me that it could be quicker for the older folk with it due to their frailty. Mum only started to need help in July with eating due to a UTI and it is the infections that have knocked her down a big stage each time.

Hugs

[NannaB]

When my hubby was diagnosed in 2010 I Googled PSP and read everything !

One statement that stuck with me was that sufferers can live for about 7 years after diagnosis but much longer with good nutrition. I've dismissed the 7 years bit in my mind, as some are diagnosed early on and others mis diagnosed for years but have taken on board the good nutrition bit. It's not going to harm eating healthy food and may help keep other illnesses at bay. My husband loves his food like daughtermo 1s mum, so although it takes ages for him to eat, I'll keep him off processed food and keep to fresh fruit and veg, lots of fish and white meat and quorn. I bought him a smoothy maker for Christmas as smoothies are easier for him to drink so he gets lots of fruit. It may not delay the PSP but good food is something he can enjoy at the moment.

NannaB

[Kathy in reply to NannaB]

Smoothy maker.....what a brilliant idea!!! Might have to invest in one for Mum - fruit is one of the things she really struggles to eat at the moment. It's got to be good for the bowels, too!!!

It pays to read all the questions and responses on this site!

[mummybear in reply to Kathy]

Hi Kathy, if your looking for a Smoothy maker you can now get them as attachments to Blenders, Have a look around, even a blender on it's own will do? When all veg has to be blended and Meat ground there a Godsend!

[Kathy]

Hi Judy,

As the others have said, it's not going to hurt to eat healthily but there's no evidence that it will affect the PSP. The thing to bear in mind is the healthier your diet the more likely you are to be able to avoid or fight infections. Infection is one of the worst things to "accelerate" the symptoms of PSP. Hope this helps!

love

Kathy xxx

[anniemay]

Hi Judy, my husband has had PSP for 10 years, although first diagnosed with Parkinsons so the first 4 years on medications which did not agree with him, to things that were supposed to "help" symptoms of PSP, to no medications for the last 3 years. He has always enjoyed his food, and eats copious amounts of fruit as otherwise is prone to constipation. Good diet does help prevent against infections, and as others have confirmed, it is the infections, particularly chest and urine tract, which have the most devastating effect. We are at the stage of slightly thickened drinks and no crumbly foods (eg biscuits), but apart from that his diet is normal and healthy. He is at least as good as he was 7 years ago, and much better than he was 5 years ago! He is very strong minded and medically had always been very fit, and this helps enormously. I wish for the same or better for you!

Ann

[superman888 in reply to anniemay]

Hi, I am glad to hear your husband is still going strong after so many years with PSP, especially when he takes no medication too. Out of interest does he take any medication for any other conditions. For example does he take any painkillers or allergy medications for hayfever or other general medication. Basically I was wondering if your husband takes any medication for other ailments which may be helping with his PSP. Does he get any neck problems too? My mum had neck problems after 6-7 years after official diagnosis and some arthritis too. I am glad to hear your husband is still going strong after 10 years.

[anniemay in reply to superman888]

Thanks for your kind words. Tom takes paracetamol 500mg and ibuprofen 400mg when needed for arthritic type pain in knees and hips. He had a problem with drooling (not being able to control excessive saliva) but has a hyoscine patch which has helped a lot, and it also makes trips to the loo more controlled! He has recently started botox injections around his eyes, as he had come to the point where they would not open.and has had mixed results, but does make it easier for him to keep his eyes open while it lasts (5-6 weeks). Yes he gets pain in his neck, and lack of movement, but not bad. As his balance is awful, he walks on a robust treadmill for about 15 minutes 3 - 5 times a week, and this helps keep his muscles working. He found that all the medications caused negative side effects and it was his choice to ditch them if he felt they were not helping!

[superman888 in reply to anniemay]

Hi anniemay thanks for replying. Interestingly I found that when I gave my mum a small amount of painkiller(either ibuprofen or paracetamol) or used ibuprofen topical gel, I thought she seemed to swallow a bit better and she moved her stiff and arthritic type arm better too. Unfortunately she was so bad in the end that swallowing tablets became very difficult. I think the fewer tablets the better and it is clear you must be doing something right otherwise he would not still be going so strong. I was interested on why he might be doing so well and it might well be the combination of good diet, exercise and maybe the painkillers too. Interestingly, your husband may have arthritis like my mum had and maybe the stiff neck too. I would just mention keeping an eye on the neck problem because I feel over time the hyperextension of the neck problem can exacerbate the swallowing difficulties. Also there are supposedly 2 types of PSP with one more severe than the other so maybe your husband may have the slower and less severe one.

[anniemay in reply to superman888]

Hi. glad you found the info useful and thanks for the advice re: neck problem, your mum was fortunate to have you. I think sufferers share a core group of problems but each have their own peculiarities. I am beginning to think that PSP is a term used to cover all neurological problems associated with signalling to muscles, and ageing in general. Tom is convinced he hasn't got PSP, just as he was convinced that his original diagnosis of Parkinsons was wrong, which is why he is not trusting of any medication, and convinced he is going to live forever! I have done all the grieving over what is going to happen in the future, and we just live each day as it comes, but it is hard to let go of the inability to plan ahead!

[superman888 in reply to anniemay]

There does seem to be some sort of signalling problem and maybe some sort of neurotransmitter disfunction is involved and also you are right it does seem to effect people in middle and old age. However it does amaze me how similar the main symptoms are for people with PSP, so I think there is definately something directly causing it other than the simple aging process. The only thing you can plan for with this illness is being perpared for the end, which can be sudden if they get an infection of the chest, and to make the most of the time you have with that person. Anyway do what keeps working and good luck to you and husband. I know how difficult it can be both of you.

[mummybear]

Hi Judy, Yes your right the Doctor must have thought you meant for a cure? Please eat healthy as you never know when it will help you out, keep you strong and healthy as that's what the Body and Mind needs. My Hubby tried Stem cell treatment about 3 years ago, the Neuro was against it just because no one had tried it for PSP then! but didn't stop us going to Germany for it, It would have helped enormously if he had given hubby advice of having a stem cell count Before, as PSP depletes the stem cells and Hubby didn't have enough to proceed with the treatment properly and was told,"COME BACK IN 6 MONTHS AND HAVE A DIET HIGH IN vVITAMINS AND MINERALS. So eat fresh and very healthy got to help you out? And if your wondering we didn't go back and that Govt Clinic was shut down 2 years later!

[jimandsharynp]

Judy, He is correct. There is no "Silver Bullet" for PSP. It is what it is. However, if taking lots of supplements gives anyone a comfort level or they feel they are of benefit I say go for it. Having said that our MD said Sharyn's "D" vitamin was low so she's taking that but no difference in PSP seen.

Jimbo

[Hidden]

Judy, my husband retired several years before me and took over the cooking at home. While I was pleased, I soon realized we were not eating well and when he started showing " strange symptoms" I was concerned it might be his diabetes and took back the cooking duties. First we stopped the diet sodas and started eating more organic fruits and veggies, then we cut back on red meats and switched from milk to almond milk and many other small changes that seemed like healthier options. I also started using coconut oil (my support group swears by this stuff). We still eat this way for the most part, but his Dr says to let him have anything he wants that he can eat without choking now. I wish there were more research articles on nutrition and these disorders, but for now we just do the best we can with what little information is available.I try to give my husband the healthiest diet I can, but I never deny him anything that he loves or craves as eating is one of the small pleasures he has left.

[Jane2212]

Hi Judy,

From what I've seen and heard from my Mom having PSP and also being involved with PSP patients & carers at our PSP help group in the UK, I don't think there is any link between PSP and a poor diet or a good one. In our group are people whose loved ones have eaten healthily and others who don't appear to have a good diet. When my Mom got PSP, she did lose a lot of weight (6 stones) but a lot of that was because her appetite went, and also she couldn't chew food so well. The PEG feed helped her regain some weight so she didn't look like a living skeleton (or supermodel !). To be honest the further she got through PSP the more we gave her anything she wanted to eat, fattening or not, as long as she could eat it without choking. She never had food allergies (unlike me) and the only medication she was on at the time PSP started was thyroxine. I still wonder if the trigger is environmental e.g. chemicals used at work.

Jane

[JudyJ]

Jane, thanks for your reply. Regarding triggers & the reading I've done, what I've come across the most is they think it's origin is a virus we get early in life, stays dormant for decades, & emerges as we age. Second was an environmental cause. Last was a genetic component. We'll see going forward what addition reasearch discovers.

[Hidden in reply to JudyJ]

hi judyj, i've been thinking along that line for awhile, could it be a mycoplasma? as far as nutrition goes i think zell oxygen or zell immunocomplex would be of great benefit, virus? colloidal silver or olive leaf extract, and of course vitamin b12 1mg and vitamin d3 will also help the immune system greatly, r- alpha lipoic acid also, there are others we are looking into to start my mother in law on shortly.

stay strong judyj... with love

[JudyJ in reply to Hidden]

Thanks for your reply. To be honest, you're talking way over my head, but in a good way. I'm afraid to step out of the boundaries of supplements my Neurologist allows me.

But I've decided a back-to-the-basics diet high in protein & fiber, but w/lots of fruits & veggies is the way to go. It's the stuff our mothers' taught us but usually ignored; common sense.

[Hidden in reply to JudyJ]

i would delighted to give you any information on the nutrients vitamins and minerals quoted, none of them are drugs or medications of any sort, i have nothing to sell just trying to find a way, or better still if you were to google the products for yourself they just might help to see a different angle.

[JudyJ in reply to Hidden]

Oh, I take it in the spirit you intended; no worries; and, going forward I will get back with questions for you; PSP is so limiting I'll take more tools for my kit but want to be careful.

Specifically, the 2 supplements I'm taking is the Co Enzyme Q10 which my Neuro said to take 100 mg of vs. 200. The marketing says it's for heart health. My Neuro said it's about stopping cells from dying, or interrupting the signal to die. Data has shown it seemed to help with the heart, so why not with the brain? Which is why he encouraged me to take it.

The other was Coconut Oil, 1 tsp a day. It's hard to find here, & I've been trying to find it in a different form. What I've got is a large bottle that has to be refrigerated, then scrape a tsp from the top...not easy to do; also has the taste/texture of candle wax, not that I eat candle wax...

My problem with the supplements is of my own creation; I've been inconsistent about taking them & need to get my act together. Perhaps when I've reached a couple of months of consistency with these 2, I'll seek out others.

I'm so fortunate to have a nuero who thinks outside the box. He got all excited when I asked about the coconut oil; thought he'd think I was kooky. Instead, got a big smile, his blessing to use it, and says he has patients who swear it helps improve their balance and lesson falls; can't beat that.

[Hidden in reply to JudyJ]

just a heads up on this product. zell oxygen is a liquid concentrate, the thing that most interests me is that helps to rebuild the dna and Rna in the cells and helps the mitochondria by detoxing toxins in the cells and helps the blood to carry oxygen to the brain, it helps the body to make new cells amongst other things, it is a superfood, the list of ingredients is long, it has everything, vitamins, minerals, amino acids, enzymes, fatty acids, its a powerful antioxidant.

[ManakGupta]

hi

its an interesting discussion regarding the cause for the psp..

my father used to work for a indian masala company and i have experienced that when ever i used to enter his working premises a strong affervescent of the masalaz used to be present..maybe it somehow triggered psp..

also as far as i think my father used to take a lot of supplements...sometimes even 12-15 tabs a day of various supplements in all...i somehow feel that also has in some way contributed to the disease.

so i have stopped all suppplements for him apart from the ones prescribed by the doctors.

even the neurologist says that overdose of supplements can cause this..but interestingly no other side effects of supplement overdose are seen in him..so cant be sure whether supplements are helpful or deteriorating.

ofcourse good diet is very essential. apart from fighting infections it helps in mood elevation which is very necessary for patients.

regarding the medicines..

i feel that yes doctors advice to keep the pts off medicines for as long as possible is true but as in the case of pain killers, there is a stage where medicines are necessary for improving the quality of life and that time thety should be prescribed.

the problem is with resistance developing and also the haalucinations relating to the psp medication.

i would love to know if anyone of you have a similar histoey with overuse of supplements before the disease was diagnosed...or environment related issues such as work environment where the person gets exposed to the chemical agents.

regards

Dr. Manak Gupta

[JudyJ]

Dr. Gupta:

I'm 54 & just started taking supplements after the PSP diagnoses; those being Co Q 10 Enzyme (100 mg/day) & coconut oil for balance and lessen falling episodes; I haven't been consistent with the Coconut oil; need to figure out a better plan to make it user-friendly:). I am blessed to have a Neurologist, Dr. Marcel Hungs, here in MN, USA, who enthusiastically responded to my questions if I should take either; he was familiar with both & said he has a few patients who swear by the Coconut Oil; not only has it almost stopped their falls, their balance is much improved. Oh, I also take Vit D 2000 mg/day for long-term depression.

My Nuerologist doesn't have me on that much meds yet, at least I don't think. Diagnosed 8-12 but am sure the symptoms started in 2010. Has me on a muscle relaxer, 2 memory meds (1 just added after months of using just one; wasn't helping), and, very thankfully, has me on a Fentanyl patch. The pain that comes with this even tho I'm in the earlier stages of this is indescribable.

I respect him very much, tho, because he still has me on small dosages to allow for what might be needed in the upcoming months/years. But to remove most of the pain I was experiencing via the Fentanyl is the best, kindest, benevolant thing anyone has done for me. To be able to move around the house & feel like I am at least partially productive, or more willing to go out to shop, but especially sleep through the whole night, has been a life changer for me. Tho it can be argued it's very addictive, at this juncture, I say, "Who cares?" Am also expected to endure the pain that arises from this disease stoically, w/o relief? My answer is a loud NO. Suffering should be an option. I know going forward I will regress or progress, whichever way you want to put it, but for now, tho I have many limitations, it's about quality of life. And the use of this pain medication HAS put quality back into my life, and while I can, I want to enjoy it.

As to your last question I have to ask you one first? Regarding your father & the environment he worked in, what is Masalaz? Believe you mentioned an odor from it.

Growing up, I lived in a community called Oakdale, MN. (about 10 miles from the city of St. Paul.) Most signifcantly, we lived just blocks from the community of Maplewood, which is home to the 3M headquarters & manufacturing plants. More significantly, we were within 1/2 mile of their dumpsite. We grew up drinking well water til the city installed water/sewer lines when I was a teenager in the 70's.

I grew-up a sickly child with this, that, & the other thing. Both my daughters were born with a rare genetic disorder (OTC) that's X-linked, but appears to have started at my generation.

The area where I lived has developed overtime, but many original neighbors still live there. Over the last 2-3 years, we've noticed a high number of deaths involving our immediate neighbors; all passed of various or multiple cancers. Colleen, who's family we played with growing up, died last Jan of brain cancer, proceeded only by a few weeks by her father, also of cancer. Colleen had left the area a long time before that.

I've been joking the last handful of years that the more weird stuff that turns up healthwise (health problems since birth), the more I blame it on "drinking 3M's contaminated well water".

I call myself a genetic mutant

3M has way too much money and attorneys to fight them. There's been various attempts at class action suits, but the issues are so complex and go back so long, suits brought fade away or are dismisssed by a Judge at 3M's request.

To this day, the Pollution Control Agency & 3M are still arguing between themselves if the wells in the community I just moved from are contaminated by a neighboring plant. Each side has experts. Each side disagrees with the other. Unfortunately, now a large housing development has been approved to be built on the area of suspected ground water contamination. I've only scratched a minute part of the surface with the history and concerns going back to the 60-70's with 3M and how they did/or did not manage that particular dump site which was the biggest in the area for at least a few decades.

So I'm certainly for the theory there's a big environmental component to PSP. I'm certainly on the young side of this illness. But I wonder how many more like me are out there who haven't been diagnosed correctly or symptom's dismissed as 'nothing to worry about'.

One last thing about PSP having an environmental basis. During those years we drank well water so close to the 3M dump site, my Father worked for a battery company. He would come home reeking of battery acid, and could sometimes see the dust or whatever by-product it was he was working with. Just a thought about a possible PSP/environmental connection. When it comes down to it, I was sure exposed to much by contact, air, or bad well water. Can all of this be one big coincidence? My gut says I doubt it.