Went to St. Albans market this morning, found coconut oil on one of the stalls, i thought, great, found it at last, untill i looked at the price. It was £7.50 for a 400g pot and this was in a market. Is this the going price? I didn't get any as can't afford it on my budget, i would need proof that it really worked first?
Also found that my walking has become very difficult, especially in crowded places, i had my stick with me but people just kept barging into me, even an older couple (probably the same age as me, but they looked older, but fitter lol) First the women knocked into me then straight after the man did the same, nearly knocking my stick out of my hand, at that point i was so fed up i said " just knock me over why don't you", he just turned round and looked at me, no opology.was forthcoming. People these days just don't care, i get more help and consideration from the younger folk than people my age. Even little people want to help you.
Well rant over, sorry, needed to be said. Lovely sunny day to day at last, settling down to watch Grand National. xx
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tisha1953
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Hi Jill, Its the same for me, seems to be when people are coming towards me, i too hold onto hubbies hand, but sometimes i feel better walking on my own as when he walks too fast i have to remind him as he drags me, not meaning to but he forgets somtimes, especially in crowds.
Nice open spaces i like, in the country, not used to towns and lots of people, i push the trolley in supermarkets so everyone has to get out the way ha ha.
Take care Tisha xx
Hope the weather as good with you as it is here, it does lift your spirits xx
hi tisha hows it going 0k i hope and you have got over the shock of your coconut oil being 7-50 well to buy mine in Australia is about 13 dollars which i think is close enough to your currency the aussie dollar being a little bit stronger at present i thought that sounded quite reasonable as it lasts a fairly long time mate but you have to cut your cloth accordingly and if the budget wont stretch then its no go theres no certainty in anything we get mate if it was an absolutely certain cure 100 per cent it would cost you the earth and probably be a waiting list for it as well\\ im just hoping it will do the trick for everyone that takes it\\\ even if it stops you drooling or maybe legs going any small thing connecterd with psp if it stopped it re-occuring i would be more than happy if anyone has noticed an improvement in any way please could you -let me know on this site but i hope you would have been taking it daily for about 1 month or more even though it looks like candle grease or wallpaper paste and taste about the same when its in its hard state \\\\ perservere\\\ and the other thing good manners i usually take my stick out with me which i have to anyway and i have found people tp be quite considerate especially married mothers with young children in supermarket which i was quite surprised because ive heard some of the kids boy oh boy time to turn the hearing aid off \\ but they have told there kids that were running riot through the supermarket and pulled them to one side for me to pass by and told them to be careful of elderly people with sticks for which i was very grateful and i thought saved by the bell but tisha i cant see the price coming down for the oil so just see if you could save 50 p a week i dont really know how much your currency is worth but i suppose it would be about 4 cups of coffee maybe wrong anyway mate whatever you decide to do get it or leave it take care look after yourself god bless peter jones queensland australia psp sufferer no intererest in oil manufacturers shares or shops that sell it not even a poor relation
Hi Peter, perhaps i am being a bit tight, at the moment i am still trying to get benifits so not much money coming in, hopefully when all sorted i will try some. I found also that is the younger people that are more considerate, everyone seems to be in a rush these days, perhaps its because i have slowed down so much i get in their way ? Do you take the oil Peter? Most people seem to rave about it, i'm not sure if i could stand the taste, i don't like fat! Take care Tisha x
Hi Tisha, I was shocked at the price but thought I'd give it a go as it is supposed to be good. Only on the first jar so haven't noticed any improvements in my husband's symptoms. I spread it on bread when he has sandwiches so the filling disguises the taste and texture. I've also cooked with it so probably kill all the goodness.
that seems the price,my wife takes it and I think she not got worse,but a bit better
go safe
highhopes
Have you tried to see if it is available in capsule form? If it is, you may find it more economical and also you would be able to work out how long it would last you. On the subject of extra support, I was told by my PSPA rep that Linseed oil has been proven to work with pwPSP to regulate their bowels. The only thing that stopped me trying it with mum was that the care home had to have the GP approval on everything they gave mum in case of repercussions and the GP never did get back to us on that one.Again this can be bought in either capsules or powder for sprinkling in food. It is available at health food shops. They do 3 for 2 sometimes on things there so may be worth keeping an eye out for coconut oil there Internet is also sometimes good for bargains. You can check the reviews online too, to see what others find things good for.
My sister-in-law just told me yesterday that you can purchase a tea at the health food store called "Smooth Move Tea" that is great for constipation. I'm going to pick some up and give a try for my PSP wife. I'll let you know how it does or doesn't work.
I don't know what the exact price was I paid in the US, but I'll trying looking for it. I've also been looking at other places to get it besides Walmart (huge conglomerate of stores with low end pricing) because the large jar of it is user unfriendly, but haven't found it anywhere else...? It has the concisitency of hard candle wax; has to be refrigerated one opened. I have been sucessful into grating in tsp's worth, & it goes down easy, just a little labor intensive.
My only monthly income is Social Security Disability. From that, there's an aumtomatic deduction every month for about $100 which I was told by many people at the top of pier with Disability, I have to have. And I have to have to so I can spend another $150-160 to get a Medicare Replacement Plan, which acutally acts as a Primary Health Insurance Provider, and little if any, gets diverted off for Medicare to pay. Been told by many providers Medicare absolutely won't apply to this or that situation, but I have to pay $100 to get to I can pay even more for Health Coverage....grrrrrr...confusing as all get it.
But my truth is this. Going forward, on a fixed income, I don't know how much longer and/or what month I might be able to afford the supplements. Do the Coconut thing. Do the Co-Enzyme Q 10 thing & the more people I talk to, so are they. But it's about $20 bucks a month here, and $20 buck is 20 bucks. And I do my Vit D. Have to have it; it helps; I buy it in a larger size & when it's on sale for 'buy one get one free', so it's affordable.
The co-pays on some of my RX meds have gone up since the 1st of the year. I take Pristiq; have for the past few years when it just came out. It is the new line (and the only 1 I think) that treats more than one kind of depression. It's helped a lot, considering where I was before taking it; before Pristiq, I'd tried the anti-depressents they now call the old lone i.e., prozac, selexa, sertaline, etc. My physchatrist said I would not do well going back to that class of anti-depressants.
Regarding the Pristiq because it is a new FDA approved medication, it stays on the market for 7 years, in it's pure-form, before it can be allowed to become a generic, opening it to several drug manufactures who can make it in a generic form, and much more affordable to people who are using it or can really benefit from using it.
During December my Neuro also started me on a memory med called "Namenda". It too is going thru the governmental protection of being marketed and sold only by it's original maker. This patent ends 2015 and will open it up to being manufactured in a generic form making it much affordable to get. I know for myself, I really struggled weeks 3 &4 getting the theraputic level but I feel improvement with this med. But the co-pay is $40. 40 buck is 40 bucks. Add the $80 from the Pristiq to the 40 bucks and we're at $120 not including supplements. And I take a short list of other RX med that all have a co-pay; figure I'm approaching $200 with my copays, give or take a little for the supplements.
Then there's the $15 here, $20 there they hit you with copays to see a doc, a therapist, or a higher-copay for an 'out treatment testing procedure'.
I've heard the generation just ahead of me talk for some time now about how getting the meds your doctors want you to take is a real dilemma; I get it now; I'm living it. Often heard them same it comes down to, living on a fixed income, choosing to eat or choosing to take your meds.
There maybe nay-sayers out there who are at least thinking 'they should have planned their life better'. That's malarky & designed to make those who espew these statements feel more grandiose than they already feel they are. Life turns on a dime, both to the good and not so good. Live events happen sometimes that no matter of how much planning, it's all gone in a matter of weeks or months. Instead of passing judgment on each other (I'm talking that crazy family of mine who I'm stuck with and some other's I know, how bout we hold the government, FDA, and very powerful pharmasutical companies with at least a good share of responsibility?
Feels like they're the puppet-masters and we're the puppets. It's just my opinion, but my belief for many years are the drug companies don't want to find a 'cure' for this or that, because it's more profitable to continue to come up with (profitable) drugs to help manage diseases.
As I learned when my daughters were born with OTC (google it) but not diagnosed til 5 and 6 by which time much damage was done to them, it was so rare the treatment for it was next to none. It became an orphan drug, starting at $4,000/per chile/per. If the FDA determines there's a need for it but no drug company wants to make it because of 0 profits or losing money, the government mandates a company set up a special line to make it for those who need it. The rub here is it cost pennies on the dollar to make, but they had to recoup their $ by gouging parents and/or offering a special credit program. And as I understood it at the time, once you started this med, you'd be on it for life. All kinds of serious side affects. Did my research over weeks and sent it sever places in the US to make it more user friendly. My girls were 5/6' couldn't even swallow a tylenol. But I was supposed to majically get the to take 10 penicillin sized pills down their precious throats 4 times a day, or NG tube them 4 times a day and pour 40 grams of it in powedered form 4 times a day. None of the places I sent it to could do anything withit to make it more user friendly. Went back to Mayo, w/o the girls, apprehensive, and told him I just couldn't force this med on them after all I learned; compared it to sometimes the chemo is worse than the cancer. Wow-was he MAD. Got all blustery and shamed me for not helping my children. Never will forget it. I did suggest we try a low protein diet by itself, which he reluctantly agreed to. Within a month, we saw amazing progress in their energy levels, had color in their faces; took interest in things they hadn't before. Unfortunately, because by no failure on my part to get them diagnosed in the metro (still have nightmares about it), damage was done to their nervous systems and more.
Belive my point is that there is a fair probability I will be in a position that I will have to let go of supplements due to a rigid budget. I believe it's also possible I maybe one of those in a position who has to "choose to eat" or "choose to take the medication I need.
I also believe there is a fair probablity, in my life time, a cure will not be found for PSP, especially after the experience and knowledge I gained from raising MY Lovlies. Just my opinion, but it seems to me with some of the more rare diseases, also meaning less people involved who need meds to treat the symptoms, I don't believe there is enough 'profit' in this disease to pull out the stops and pay attention to 'it'. 'It' being PSP. But for every 'it' with 'PSP', there are real people with this who still have hopes and wishes and plan and want to shoot for the moon. Right beside them, are their caretakers who devotedly love them, care for them in ways that far exceed a diaper change. Caretakers, spouses, children of parents who have PSP, and all the family/friends/neighbors/ who care the 'its' are suffering right a long side of them.
And to have it come down too many times to 'profit', if we're worth being helped if not saved, cannot me measure in a study or on a spreadsheet.
Nor, at the beginning of our beautiful spring, should I find myself wondering if I will be one of those 'its' who will have to choose to eat or choose to spend the $ on medications I truly need, but are so over-priced, it literally comes down to those kinds of questions just to get by.
Oh Judy, i am so sorry to hear of your predicament, all i can say is thank God for the NHS, I have just been awarded Disability Living Allowance, lowest rate, but it means i don't have to pay any prescription fees for meds or opticians or dentist ect. so that will be a big help.Hearing about others problems puts mine in perspective.
It's been so interesting to me since I started on this site listening to those out of this country who have universal insurance, or what it may be called elsewhere.
I'm totally for universal, national, or whatever it be called, health insurance. And for a very long time. Too many go without it because they can't afford it or their employer doesn't offer it, on and on it goes.
I've often stood in lines at pharmacies behind the elderly who presumably live on fixed incomes and hear what their 'co-pay' is, which is so high and felt so bad for them, knowing it could happen to anyone someday, including me.
Just my opinion, but there is just no reasonable explanation why so many of us in this country still are in a position at times or for the foreseeable future, have to pay so much out-of-pocket for much needed meds, or decide which you must continue & what you have to let go of, or sacrifice a portion or all of your food budget to get it.
While the pharmasutical companies and large health care providers are doing very well for themselves. It is so surreal. I've watched over a life-time what was once our hard working middle class dissolve and merge with the lower middle-class, or simply the poverty level. Mostly through no fault of their own. Job losses, out-sourcing, outrageous rent prices (Minneapolis I think is in the top 10). And the figurative erasing of what used to be a healthy social program system, which has been diminished to next to nothing.
This I know for sure; I'm 55, and I've been side-lined by several surgeries (mostly orthpaedic; I've had 16 surgeries, yes, all quite necessary, none cosmetic since 2002; but most came 2005 forward), unable to work, and now dealing with PSP. It was such a hard time for the girls and me, I didn't apply for disability til 2008 because I felt unworthy; heard so many horror stories of how hard it was to get; a lawyer which I didn't hire BTW, said only 4 percent of those who apply get it the 1st try; the rest have to appeal he said, usually more than once, and most usually give up.
I felt hopeless as it was and thought 'surely they're others out there who have it worse than me'. Told myself that for 3 years til I applied; 4 months went by, past the usual allotted time they said they'd respond, so I thought it was over. Til I got a call from a woman on a lovely Friday afternoon who said yes I qualified, and as far back as 2005. She said my medical records spoke for me and I didn't even have to interview. She joked the deemed me disabled beginning '05 but only because they could go back just 3 years, or she said it would be longer.
What a validation. And an enormous relief. Forever grateful. It's not a great sum I receive and I have to be very prudent, but I'm so grateful. Up to that point, my best friend was paying to keep my utilities connected (paid her back all I owed her), received child support, but after the house payment, had exactly $128 left for the whole month for everything. It cannot be done.
It was so surreal living under the poverty level in an affluent area. Over time, realized how many people just looked past me. How I hit bottom wasn't supposed to happen to a person like me. And my girls. What a hard time it was for them; in the present, tho, they are my hereos. Lived thru a lot of adversity. When I got the call I was accepted on Disability, we didn't have a working stove/oven or refrigerator. We microwaved our food and every other day I walked to the store and bought to bags of ice for the cooler to have some dairy products. We did that for months. Our families knew; didn't matter much or at all.
Went thru a period of 9 months w/o garbage service because I got behind on the bill. The house was just awful & the garage was piled from ceiling to floor. And the house became infested with mice.
I could go on and on but you get the picture. As HARD as all of that was, the thing I kept telling my girls was to never give up hope, validated their feelings that it was HARD, rather than sugar-coat the obvious; just no way to do that without messing with their heads. Kept telling them it was a particularly long plateau of hardship we were experiencing but it WOULD pass. And told them how strong they really were compared to their peers. Living in an affluent area, my kids got teased. Everyday. About their Goodwill clothes, our clonker of a car when I finally got it going in '05 after it was down for 2 years, about what I loser I must be, about how they got to go on big trips during breaks and mine didn't. It was heart-wrenching. I felt so ashamed and guilty tho it was misguided.
See, Tisha, you get me jabbering Really, it's not hard to do...I just feel this almost overwhelming need to get said what I need to say, on the sooner side than the later.
The upside to the gloomy, unpleasant, reality I painted is I/we learned so much; too much to be put in words. Quite a bit of it wasn't good...but I attribute it to our culture's need for 'more of everything', at least the small population who can still afford it. And the generally, people's comfort zones are very small and intolerant-I'm speaking of those in my peer range and the local area I lived infor 12 years. Seems most can't be bothered to make time to help someone who needs it, even with a few chores etc. Not the way I want our culture to go, but it's my take on it. How we lived I wouldn't wish on anyone, nor our various physical issues and problems. But what is truly a myth I learned the hard way is the 'help' we assume will be there should we hit bottom isn't there; social services has shrunk to almost nothing. We're a big country; we need social programs. There are so many out there just like me who fall thru the cracks everyday. I totally get now how homelessness happens.
I can't say I'm better or stronger because of it, but I can say with certainty I'm a much more patient, tolerant, and empathetic person than I was before we hit bottom.
I can also say with pleasure, my girls, My Lovelies, are the least materialistic kids I know at their age (20 and 21), and are be far kinder and wiser than many adults I know. They are these beautiful layers of different textures, colors, and patterns, because of the hardships in their lives, and not just the more recent years we're talking about.
For me, being diagnosed with PSP has become a pronounced spiritual journey as well. My belief is our hardships should leave us with more layers of textures, colors, and patterns, to show that we've learned from them, have made us more wisened, unique & beautifully complicated because of them.
The cost of virgin coconut oil is very high. Pure coconut oil is available in supermarkets at a much lower price. Does anyone know whether it has to be virgin oil or is pure just as effective? Thanks for information.
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