Frend with PSP can't use Thickit, it makes... - PSP Association
Frend with PSP can't use Thickit, it makes saliva so thick she can't talk at all, yet she chokes on liquids. Is there something that works?
Hi Patandlinda
Sorry never heard of Thickit but my husband has either pineapple or black grape juice which helps, so does just ordinary water believe it or not.
Dorothy thompson
hi patandlinda I use dark grape juice to break up the mucas or sometimes cold water its worth a shot mate you can buy it in coles or woolworths if you are near them or a general store should have it as well it is quite reasonably priced for a two litre container or you can probably get a 1 Litre to see how you go with it first OR THE EQUIVELENT IN YOUR FLUID MEASUREMENTS peter jones queensland australia PSP sufferer that's what I use =myself mate To break up the yukky stuff GOOD LUCK MATEY
I drink a lot of water and I don't choke on foods and hardly ever on liquids
Sadly with psp their is only the thick n easy and its like glue,my mom had it in drinks,and sumtimes we literally had to spoon it to her.The swallowing is awful as they choke so much as lungs cnt cope with it causing them to aspirated.Sadly my mom lost her battle with psp April 14th 2013 after bein in hospital we tuk her back to the nursing home were she lasted a further 12 horrific days her swallowing reflex completely went so she choked to death,we were all with her til the very end.Psp is an awful disease for the patient bt also for loved ones to watch.My dad also had psp he died January 2009 so I'm quite clued up on psp unfortunately hope ur relative gets all the help n support they need.Please feel free to ask me nething my name is Wendy gud luck xx
Oh Wendy - both of your parents had psp? That's awful. I can't imagine your family's suffering. I'm so sorry. I have to ask: given the rarity of the disease, it certainly raises the question of cause; did any of the doctors ever address that for you? Easterncedar
Hi east cedar,yes dr Nichols at the Q.E hospital in Birmingham was totally in shock that both parents had such a rare disease n use to ask us questions all the time,he said the chances of us havin bth parents r 50 billion to one as its never bein heard of b4.Ive tried to get genetics tests dun but they have refused as they no so little bt psp even asked if mom n dad were related,which the not.All they can cum up with is sumwere in mom n dads life they were sumwere. And cud ve been xposed to sumthing in the air I'm not convinced.Wishing you all the very best what relation is it 2 u who has psp and were r u frm if u dnt mind me asking xx
50 billion to one. Those odds are awfully hard to comprehend. You'd think there has to be some factor in common - did your parents grow up near one another? My sweetheart has psp and we're in the US.
Not trying to go off topic, but this deserves a thread of its own if you'd like to start one. I'd be interested to hear more. Given the "supposed" rarity of the disease how would it be possible that both of your parents got this same affliction? Is it simply genetics (cant be since they had different parents right) or possibly environmental factors. I'm inclined to think there's more to this. I have suspicions that we are seeing huge upticks in diseases like Autism, Asperger's and PSP because of something our bodies are taking in during modern times that weren't as prevalent years ago. Be it processed foods, GMO fruits and vegetables, artificial sweeteners like aspartame or possibly vaccine additives that were not used years and years ago (see recent like between thimerasol in MMR vaccine and autism.)
It's interesting for sure, jrock. A recent study links DDT and Alzheimers (although scepticism requires that I mention that I remember when it was aluminum in deodorant that was viewed with suspicion years back). I am disinclined to believe the vaccine-autism link. That's been pretty thoroughly studied and debunked - bad science to begin with. But something is surely going on.
You probably didn't read about court settlements paid out and admissions by Merck (vaccine maker) and the former director of the CDC in May through August of 2013. It made very little news....the story was buried. But it was reported by Fox....and never mentioned again.
childhealthsafety.wordpress...
Gawd, not Fox. The more you watch, the less you know.
My point was not politically based. Fox is garbage. They are neo-con all the way. I have no political affiliation. I am an equal party offender. Both parties are different flavors of poo-poo. They are both turds, both stink and they both stink with their own unique aroma. My point was simply that the MSM (mainstream media) picked up the story for one day (and one day only) and flushed it down the toilet. Please take the time to read the article I hyperlinked rather than simply tune out because the only network that ran the story doesn't match your political choice. To reiterate, I think Fox is a propaganda machine....but once they ran this story even their own network pulled the plug. Why not judge the story based on the content?? Did you catch the part about millions paid out by Merck to autistic claimants and CDC director admitting the link or did you just tune out the second you heard something you deemed not in your normalcy bias?
Sorry, Jrock for my previous comment. I was out of line. This isn't the time or place for that conversation.
Thank you for the link! interesting the focus has previously been on the additives in the vaccinations-not the vaccinations. My son contracted measles before the scheduled vaccination so it was not given to him. Live viruses in vaccinations are very powerful. Before heading to college my son had several boosters and when he was tested for illness almost a year later they showed up in his blood tests as if he had actually contracted them! Live virus vaccinations are never recommended for the elderly or those with weakened immune systems and yet we pump them into infants and/or toddlers, many of which were not breastfed. (The mother's immunities are passed in her breast milk). Think about it.
Exactly, and also they want to do sometimes 3 or 4 different shots all in the same day. That's a lot for a 10-25 lb little baby to absorb all at once. My son got his Hep vaccination right after he was born in 2012, but we haven't done any of the others yet. I'm not sure if we should space them out or avoid them altogether. I read about a pharmacy in NJ that makes them without any additives. They just require the prescription and you order them over the phone/online and they ship to your doctor for administering. When I asked my pediatrician for a script she refused. When I asked if she could at least call the pharmacy and I explained why I wanted to go this route she thought I was crazy and made me sign a waiver stating I chose not to vaccinate my child.
Hep B, is usually sexualy transmitted. For a baby?! We all received polio and are ok. My son had all but the MMR. We had to sign a waiver stating he had contracted Measles. Maybe you could find a holistic practitioner who is more open minded?
Yes, HEP B vaccinations are the very first one a newborn gets...before you even leave the hospital to go home after birth. Hence why I allowed and did not have time for research.
"Three hepatitis B shots are part of the standard government-recommended childhood vaccination schedule 1, with the first dose given at 12 hours of age in the newborn nursery of most hospitals."
Had I read this first, I would have never allowed:
articles.mercola.com/sites/...
Total number of vaccine shots now required in the US: 115 (not separate vaccines, but total number of shots for all vaccination schedules....many contain 2-4 shots per vaccine.)
It was not like this years and years ago. It changed in 1991. And now we see all these brain related diseases surging (maybe not PSP related, but certainly Austism, Apbergers.....there is some link.) And I think based on the comment of the above member (both parents had PSP) we have to start paying attention to these possible links. The pharma companies and chemical manufacturers aren't going to volunteer this info. and as long as its considered "fringe" or "conspiracy" no one pays attention. I would hope ppl on this site have gone through enough pain and struggle to start asking some tough questions. Here's more info on the MASSIVE increase in vaccinations now required in the US to attend school:
Also worth considering is farm fertilisation methods and if they were war babies? Do we know what bombing exposed people to bearing in mind things like asbestos and other manufactured substances in the past?
I'm sure that there are lots of factors with a lot of these conditions but there is also the factor that they are often conditions that are still young in research and science. They do think, especially with autism, that a main reason it appears on the up is that is being diagnosed a lot better these days. This is also true of psp as a lot of people are still being misdiagnosed. There is a lot of evidence through history of people having these conditions but nobody actually knew what they were. If you had Autism years ago you were just the local idiot. So although it may sound like an increase it could also be seen as a positive that more people are being recognised and getting the help they need.
My father Age 60 having PSP.WE diagnosed 1 week before.His right hand and right leg are slow active...falling all of a sudden...Now he s in complete bed rest..eating,having tablets and sleeping..What is his position now?...What will happen next?.....
We were recommended a different thickener by the SALT lady and it was not only a nicer consistency but more effective. The trouble with thickener is that it is tempting to add too much. Try adding less but also contact the speech and language dept at your local hospital. The switch board should at least have another number if it's not based there . Also mum managed far better with straws and I encouraged that as I figured the muscles used for sucking would also work better for speech longer. The salt team can also tell you where you can get valved straws for later. X Dianne
Hi Patandlinda
Ask her to add less of the thickening, trials of different consistencies may work, never mind what the professionals recommend. My hubby has lost a lot of weight, and in order to give him more calories, it was suggested to give him juice- and milk shakes. These are made by adding milkpowder and double cream or ice cream. The resulting thickness was ideal for him and the shakes taste delicious.
Maddy
I agree with MaddyS above. Thick cream is now your friend! add it to savory stews too. Lentils, beans and potatoes all thicken soups, then liquidize. The foodstuff needs to be a consistant consistancy, rather than solid plus liquid.
We found creme caramel was reasonably easy to swallow. Mum liked a salmon mousse too. Go easy on the salt though.
Just a note of caution re: adding thick cream to things - High fat dairy products can thicken natural secretions and make them difficult to shift! Not sure if lower fat creme fraiche would have the same "thickening" effect without the associated problems?!?
K
Kathy. That is what I heard. The source said "avoid milk products. They cause thickening of saliva and hinder swallowing. ". Perhaps others could post their experiences with dairy and saliva.
Jimbo
Hi Jimbo
We did have problems with milk at one time. We stopped using it for a while and then started again as hubby likes his tea with milk. We have had no problem since. This disease is so unpredictable. My motto is, if it does not work today, it probably will tomorrow.
Maddy
We have started using those little coffee straws, and Ron is choking less. The thickener does not seem to work. He just got out of the hospital with his first bout of pneumonia. We are trying puréed foods and using the little straws.
Greenbee. We also found straws work well. I like the clear ones so I can see how much volume is going in as I help her drink.
Jimbo
No my parents grew up in England n mom frm Wales it's a total mystery wishing ur sweetheart all the very best keep me posted how ur getting on or if I can give u ne advice xx
I would luv to no the answer to that question myself,as no 1 frm medical side can give us the answers we want.Call it a cruel twist of freight.As when they told us 3 yrs ago mom had got psp u Cudve knocked us dwn with a feather.To watch sum1 with psp is awful bt then to have to go thru it again was horrific as mom was lot worse than dad.Hope ur loved one getting the help they need n deserve x
Very bizarre and simply terrible. Its equivalent to winning the worst lottery ever...like the inverse of a multi-state powerball. Mom in still in the early stages now....I think...though it seems be swinging back and forth wildly in terms of good days and bad days. She doesn't have swallowing problems that Im aare of. Just a "smacking" that she does with her mouth that makes it appear dry....rather than the usual problem most PSP sufferers have. Although she is heavily medicated with psychiatric drugs which may account for this.
Our neurologist said two drops of eye drops under the tongue eases saliva issues. It drys the mouth. Don't eat or drink immediately after using drops as it takes them a bit of time to work. Eye drops contain atropine which is why it works for saliva. Don't overuse as it is a heart stimulant also. Check with your medical professional.
Jimbo
My husband seems to be aspirating and gurgling more and more. He does not want a feeding tube.
Hi, My husband has to use a straw to drink anything. the thicker juices, like pineapple and mango blends seem to work best. we actually just discovered that, and now he's comsuming lots. He cannot drink clear juices or water or anything like that, but I haven't used any thickener, other than yogurt in smoothies. from other responses I guess dairy products are not the best choice. hope your friend gets sorted out!
joan
To Greenbee: We do not want to use feeding tubes either. No desire to prolong this disease.
