I'm 6 mos. into PSP tho symptoms started 2... - PSP Association
I'm 6 mos. into PSP tho symptoms started 2010. Just starting to have trouble w/aspiration. 3 events over 2 weeks; only liquids. Any advice?
Hi Judy,
Mum has her liquids thickened with a tasteless powder called 'Nutilis' that is prescribed for her. A teaspoon in a mug seems sufficient to reduce the aspiration. It doesn't work in fizzy drinks though. I think I've read somewhere on this site that in the US you can buy something similar over the counter called 'Thick It'. A speech and language therapist should be able to advise you on this and any other issues to do with swallowing so it may be worth seeing if you can get a referral.
h
Holy cow! I looked for a product similiar to this on-line at the pharmacy I use (well known chain in the States). The closest thing I found to what you described is very expensive and can only be ordered on line. I have a Neuro visit in March; think I'll wait to talk to him about and be careful in the mean time; thanks for your reply, tho.
Hi. If you have problems you should take them with thickening liquids. It would be interesting to know videodeglucion hacerce one food that is having problems and according to that program with a nutrition plan specialist. Kisses.
hi judy sorry ABOUT YOUR ASPIRATIONS BUT THAT SEEMS TO BE THE PATTERN I BOUGHT SOME EASY THICK ADVANCED FOR MY FLUIDS IT ALSO WAS EXPENSIVE I THOUGHT\\ LIKE ALL THINGS FOR THE DISABLED THEY ARE EXPENSIVE BUT WE HAVE NO CHOICE IM AFRAID ITS LIKE WALLPAPER PASTE ONCE ITS MIXED AND MAKES A GOOD CUP OF TEA LOOK TERRIBLE I BELIEVE THEY HAVE JUST BOUGHT A NEW ONE OUT WHICH I TRIED BUT IT REALLY DID NOT SEEM A LOT BETTER IN TEA THAT IS\\ IN WATER IT WAS OK PROVIDING YOU NEVER HAD TO THICKEN YOUR WATER BY THAT MUCH POWDER \\ BUT YOU HAVE NO CHOICE IT SEEMS EITHER THAT OR ASPIRATE YOUR FOOD YOU CAN CUT UP INTO MANAGEABLE PIECES SO YOU WILL BE MORE COMFORTABLE EATING IT UNLESS OF COURSE YOU HAVE TO PUREE IT I GOT ALL MY INFORMATION OFF OF MY SPEECH LADY WHO I HAVE BEEN GOING TO SINCE 2005 GOOD LUCK WITH EVERYTHING PETER JONES QUEENSLAND AUSTRALIA
Thanks for this information. You're right; being disabled is expensive; we are a captive market; I just had a jolt of sticker shock; perhaps they're priced about the same everywhere. So far, it's the clear liquids that cause me to aspirate, but not everytime, thankfully. And, solid food so far is not an issue.
Also noticed they had dozens of other 'purees' to replace very specific solid food items, even pureed whole 'dinners', for those with swallowing disorders. Very pricey & unappealing. You'd pay as much, or a bit less, for some of those 'pureed meals' I saw on-line today at some up-scale or fine dining restaurants in the St. Paul, Minneapolis area in MN. Quite a learning experience for me.
I get your point PSP is here to stay for those of us affected, and it's up to us who are fortunate to be in the earlier stages of who's PSP is progressing more slowly, to adapt as best we can and make use of the resources available to us. I've had a hard 3-4 weeks on many levels that left me in quite a wallow. I need to get ahead of the despair now, do what I need to do to feel like I do have some mastery and control over least a few things.
And the kitchen sounds like a great place to start! I will buy & add a thickner to beverages like it or not, because it's good for me & prevents a safety issue if I don't. But, where I'm drawing my own line is on solid food. I will cook healthy meals for myself and my daughters; we can have a good laugh (good laughs are good stuff and don't go with wallowing:)) when I ask them to cut and/or smoosh my food a bit as I did for them when they were wee ones.
I've always wanted a Food Processor but never treated myself to one...now one of my new goals is to invest in a good food processor this week, and learn to use it creatively and well. Could come up with solid foods of many varities that have all the right stuff to be delicious, but most importantly, the right thickness, texture, & nutrition. Going forward, if anyone's going to be pureeing my food, it's going to be me, and for as long as I can
....then there's smoothies; 'viola! I have the equipment but lost interest in making them as the girls got older. Fruit or vegetable or just yummy calorie-laden made-from-fun stuff if that's what needed at the time as long as safety's first.. As I understand it, dairy products are not great to use with PSP but there's lots of substitutes. All can be made to the needed consistency and nutritional needs.
You say you've received all of this info from your speech lady you've been seeing since 2005. That's 8 years ago. I'm justing getting glimpses of your journey and insights on these posts, but you must be doing a lot of things right to at least sound as articulate as you do. No doubt you'll say it's a lot about attitude. This last handful of weeks and receiving much negativity from people I thought would be supportive, feeling like garbage, additional symptoms, etc., is the lowest and longest I let myself get swallowed up by it; there are still days I'm trying to figure out what my 'new normal' is; tough stuff. I have great faith in my Neuro but was surprised and disappointed when I asked him for a referral to a nutritionist to help; eager to learn, I am. He bluntly told me it didn't matter if I ate well or like garbage; there is no correlation between PSP and whether you eat well or eat junk; said it doesn't matter. Thinking I caught him on a bad day; he seemed a little abrupt and rushed which isn't usually his demeanor. So, during my March visit, I'm going to get after him a bit about working with a physical therapist, occupational therapist, and perhaps and nutritionist. I DO need those outside services to increase the quality of my life or at least stabalize and slow this train down. I'm only 54; I'm a kid for the cripes sake!
So, you Peter Jones, wrote a reply to my question about aspiration; though it's a truly serious issue with sometimes deadly consequences from complications, you blew in at just the perfect time to anwer my question, and how to thicken food/beverage with bland additives...or settle for pureed food. After what I saw on line it wasn't the expense that was stunning...it was the pictures of the products...ugh. Only one way to go for me now and this has me inspired to cook/drink in a very creative, non-bland way. It'll be fun. Fun is good.
Thanks Mr. Jones; 'twas a small thing you did but for me, blossomed like a tree.
Judy Johnson
St. Paul, MN, USA
hi judy
i too ahve PSP and prob the slow sort as i wa sdxd dec2010 and am still her euprigh tmost fo the time
i have problems with swwallowign and choking and us eTHICK AND EASY IN COLD DRIGNKS LIKE JUICE
(It doesnt taste of much bjut coffee ro tea or red wine ?? no no !!)
I agree:juices & smoothies r great and we have a smoothie maker - grea for carrot juice
plz excus emy dyslexic typing - once i wa s a touch typist btu 1 hand stronger than the other make s it difficult to make it ok on htis sit e as i cnanot correct it easily
if you wnnet ot message me with iur email address i can also keep in touch tha tway
lol Jill
:_)
Thanks for your reply; do need to try and find "Thick And Easy"; must market it here somewhere in the states and hopefully locally. I'll get back to you on the email/typing issue; want to do whatever works for you best.
Just for information- we were using Thick and Easy with mum until the speech therapist (SALT) recommended Resolve. This does a similar job but blends better and doesn't seperate after a while. It also seems smoother for mum. Both are prescribed by the GP after the recommendations from SALT
I know milk products can leave people a little throaty and phlegmy but mum drinks mikshakes and Actimel really well and loves them. As she doesn't have. or want a PEG/NG I am inclined to just let her enjoy what she can while she can.
If you are having trouble swallowing you need to begin thickening your fluids. Thick liquids cause the tongue and swallowing mechanics to move slower than thin liquids. You have to think about swallowing because it is no longer done well automatically. Sounds silly but if you think "I'm going to swallow now" it prepared the brain and mechanical aspects in advance. You swallow better with your chin down and not straight ahead. That is why they make a glass and cups that are sort of partially cut out on one side so they don't have to be tipped way up to drink. There is an excellent book on swallowing titled "Swallow Safely - How Swallowing Problems Threaten the Elderly and Others". This is a paperback book and is VERY excellent!! You will learn more about the swallowing mechanics and the "dos" and Don'ts" of swallowing than you ever knew existed. Trust me on this. Oh, I'm not a relative of the authors nor do I recieve any royalties or payments from the books sales.
Jimbo
I loved your ending; lol.
Thanks for your advice as well as the book you are not receiving royalties for
Judy
hi judy hows it going ====ok i hope \\\this easy thick that i told you about is australian made im glad to say it makes a change to have something made in your own country even if it does look like wallpaper paste i will give you and anyone else that wants it the web flavourcreations.com.au you never know you might get some information off of it ========= its worth a try good luck mate take it easy \\\laughter is the best medicine for all conditions peter jones queensland australia
Thanks; information is power; so is laughter
Hi Judy, my mum has had to have her drinks thickened for her for a long time. It is so important to get a speacilased speech therapist in to check your swallow. She will watch you eat a few different foods with different textures. Some foods are an absolute no no when swallowing problems begin. Nestle do orangle and apple drink in single cartons in 3 different thickness's, these tend to be smoother than a drink thickened by think'n easy. Wishing you well my lovely, Jo UK. XXX
Thanks, Jo. Aspirating clear liquids is recent and has only been a handful, but it is part of PCP so I can't avoid it. Scary when it happens, too, I must say, especially if I'm home alone. Also seems to have left me with a wheezy, weird cough, mid-chest.
I last saw my Neuro on 1-30. Didn't mention it; had only happened once. See him again 3-13 and will definately bring it up. I do believe I'm now in a place where I'd benefit much from physical and speech therapy. I write much better than I speak; sometimes what comes out of my mouth I understand completely, but to the listener, uh uh. It's given us some good laughs, tho.
Really need my swallowing checked; didn't realize a speech therapist could do that, or there was such a test. Noticed a long time ago, at least 3 or 4 years ahead of my diagnosis, I would find myself just holding fluid in my mouth for no reason at all, & prompt myself to swallow. Go figure. Swallowing solid food, tho I am careful about keeping it bite-size, is getting a little more difficult; hurts as it goes down and it takes focus to make it go down.
So, when I see him on the 13th, I'm going to focus on rehab-type services; no better time than now.
Thanks again.
You should be able to get a professional swallow test via your insurance or even medicare. Sharyn is checked every four months. A speach therapist can observe your swallowing and that is fine. However, a test where they actually watch you swallow various items under xray is more effective because they can actually see what is happening even if you don't cough during the test. For instance, they noticed that Sharyn was having just a bit of food left in her mouth after each swallow. Not a problem now but good to know going forward. We had an assessment by a professional speech therapist but it isn't conclusive because it's based on EXTERNAL observations and not what's going on INSIDE the mouth and throat. Just my opinion.
Jimbo
I see my neuro mid month and am going to persuade him to get me going on at least P.T. and speech therapy. I've read they can do the swallowing tests, but have also read via other sources an upper GI is often the best & smartest way to go. Still dealing with the thrush issue. It's slightly better, my my flashlight show me it goes a considerable way to the back of my mounth, then downward; the Urgent Care do who saw me Friday wants me to see my Internist early this week (if I can get an appointment); she's always been a good advocate for me and quite outspoken, so perhaps she can get soemthing scheduled sooner that waiting til my 3-13 appointment to get it started. Fingers crossed.This thrush thing is unfun. Again and always, thanks for your contunued support and honesty.
There is a Lee Silverman course for speech issues. It gives your excercises to do daily to strengthen your voice and overall improve your voice. This is on DVD and is excellent. Our speech therapist recommended it. It did more for the speech than sessions with the therapist did plus you can use it over and over as many times a day as you like. Because the muscles used for voice get weak so does the voice. Our speech therapist says that when a PSP person shouts they think it is loud but in fact it is just a good level for the caregivers to understand. Check out the Lee Silverman (Lee is a woman) on the computer/google.
Jimbo
I will, for sure, & if I locate it, I will order it. I've been getting feed-back from those close to me as well as others when out in public to 'speak up', I'm talking too soft, etc. This is new; just over the past few months. The earlier the intervention, the better, I figure; I'll take all the advice I can get as well as recommendations for 'tools' to use, such as this DVD.
Your input is always appreciated; please know that.
Judy
Hi again Judy, As my mum seems to hold saliva in her mouth this has a habit of trickling down the wrong way, causing bouts of coughing. We went to see ENT Consultant last Monday on the recommendation of our speech therapist to see if mum was viable to have Botox injections into her saliva glands. No surprises the doctor had no data how this would work for a PSP patient. It is used often for Parkinson's where I was advised that patient tends to drool rather than cough/choke on saliva. It was decided to live mum at present ( as drying the mouth up too much can terribly sore as once injected the process can't be undone the effects run out 3-6 months) and he will contact mums neurologist for his views as he knows so much more about PSP. Maybe this could be something you could discuss with your doctor?
Please feel free to contact me anytime about anything for advise or even a good old moan
Wishing you well Jo xoxo
Hallo, Judy,
Don't despair! My mother started her aspiration symptoms about 2 years ago, with thin liquids like you. Today, she is still eating a normal diet, (everything except oranges, which make her choke). She hates the thickeners, so she just drinks naturally thicker liquids (like smoothies, thick juices like mango or orange, milkshakes, joghurt drinks). She even drinks coffee made with fullcream milk and although it does make her cough, she loves coffee so much we treat it like a bit of a calculated risk.
So there is no way of knowing how fast/slow your symptoms will progress, there is great variation between people's progression.
Keep a food diary, noting everytime you have a little cough the food or drink that caused it. You will soon see patterns. Mixed consistency foods can be a problem - for example, a ripe peach. While you are chewing the peach skin, the juice can trickle into your windpipe and make you cough. Peeling juicy fruit like peaches fixes this problem, for my mother at any rate.
So my advice would be to stick with natural foods for as long as you can. No need to start pureeing everything yet, take it day by day and don't measure yourself by anybody else's timeline. Your journey will be unique.
Sending you my best wishes.
Amanda.
Thanks for encouraging post, Amanda; it put a smile on my face.
My swallowing issues do need to be addressed and modifications will need to be made going forward; I like the idea of keeping it as natural as you can, and of course, smoothies!
I also like your idea of keeping a food diary purposefully. I say 'purposefully' because I have a strong tendency to think 'I'll make a mental note of it now & jot it down later.", which of course never happens.
I've been thinking a lot lately about keeping a food diary anyway. From a small child to age 54, I've always been a poor eater. Not talking about eating disorders. I have a big sweet tooth and am a grazer, but not of a healthy variety.
I've had various health problems over my lifetime, but one I've dodged is having issues with weight. Both sides of my family are lean and lanky; believe it's my genetics. I'm slim & can't afford to lose weight. This has to stop. I know I'm not getting enough protein on a daily basis for sure, and fruits and vegetables...what are those again?
I'm only hurting, not helping myself, and need to regain some self-discipline. So a 'purposeful' food diary is a great idea; perhaps even working with a nutritionist (if my insurance will cover it). If not, I will rise to the challenge and be my own best friend; if there ever was a time, this is it.
Thanks again, Amanda.
One thing to keep in mind when you think about your weight. Later in PSP when you have problems, real problems swallowing and eating, the weight you have gained in the past just might come in handy and prolong your life a bit. PSP is no time for vanity. Not saying it applys to you.
Jimbo
Oh, I agree; I've always been on the slender side tho I couldn't eat anything I wanted and when I wanted it. My point with improving my nutrition and possibly working with a nutritionist is to make sure Im getting adequate if not good nutrition on a daily basis, so on and so forth. I have no xtra weight to lose, so I want to bulk-up for what lies ahead, as I know keeping weight on going forward will be an issue. Im not gaining weight by indulginhg in my favorite sweets, so perhaps I can 'bulk up' and gain weight eating a healthier diet, just more of it.
hi judy hows it going\\ i read that your voice is getting soft or quiet well mine is the same i purchased an amplifier with a neck microphone i can heart you saying'' here we go more expense'' the amplifier is just a small one and clips on a belt and a microphone just comes around the neck to your mouth it has a volume control on it and a charger but this is only good if you are still articulate or can still talk without talking like a drunk \ hic excuse me \\ paid about 240 dollars australian for it which i thought was quite good because it allowed me to comunicate with people as i used to be an entertainer with comedy magic and singing act \\ anyway thats another story
but getting back to the amplifier i should think they would be quite reasonably priced in the states
and if you find your voice is getting really soft i would have a look at one of these things again my speech lady put me on to this a few years ago now this is only a suggestion and with all the advice and stuff you should get you would want to be a million heiress but i thought i would just let you know that there is something available out there peter jones queensland australia
Peter:
You crack me up; a former entertainer as well, eh? I was a late bloomer; didn't take to stand-up comedy til my early-to-mid 40's; I did it on a dare from my daughters. If your teenage daughters & their friends think you're funny, your're funny; not a tougher audience around Made the rounds of local comedy clubs for a few years. Came up with sets just based on truths of everyday lives; plenty of material. Never took it too seriously; figured once I did, the fun of it would die
Did a t.v. shoot a few years back; took about 3 hours and we shot almost non-stop. HAD THE TIME OF MY LIFE. A total blast. As to clubs, the 1st time I got on stage from the green room, thought I was gonna to die. Lights were dimmed, could only see the 1st few rows of people tho the club was full at 260. Was given the mike, took a big breath, and away I went. It was the biggest rush I'd ever experienced. To hear a full house laughing with you about your own stuff, or people in your life who caused the stuff, was absolutely intoxicating. So very glad I took those risks and had those experiences.
So....an amplifier as a another 'tool' is avaiable down the road when the time comes. Good to know. Have to admit, I've had some fun with my daughters saying things I probably shouldn't have to hear in response, "Mom, did you just say something?". (Wink, wink.)
You, Mr. Jones, have a wonderful weekend. And as always, thanks for you input as well as making me smile.
Judy, from across the pond.................
Just to follow-up on my question about apsiration, and all of the incredibly good advice from people who know what they're talking about, I had an appointment with my Neuro yesterday & the sudden onset of aspirating clear liquids we spent quite a bit of time on.
Bottom line, he sees this as well as other symptoms as a sign of progression; he stopped before he got to any talk of staging, etc. I appreciated it. But we're going at the PSP now, with guns a'blazing.
The apsirating did concern him a great deal. He said when you aspirate, sometimes you don't get it all out of there completely, which leads to complications. He said the aspirating explanations the bad case of thrush I was diagnosed with on 2-21. With aspiration, he said the environment changes a lot in terms of bacteria introduced to the area, fungus is easy to develop, and it just changes additional things in that environment including enzymes, etc.; it all gets out of balance.
My thrush has only improved a little since 2-21 and it's also left me with an odd cough. So, he did refer me to get a barium swallow test done (next Thursday) as suggested by Jimbo and perhaps a few others I may have forgotten to acknowledge; forgive me for that.
He's also referred to me speech therapy which can help with swallowing techniques as well as help me improve me sometimes garbled speech.
He also included a referall for physical therapy for muscle strengthening and working on balance, as well as occupational therapy to help improve my executive functioning.
He's had me on a med called Namenda for short-term memory for sometime and I can tell it's happening. But because some new issues I've been having, he's adding Arocept (sp?) to help with memory. He stated memory, short or long, is a very complicated thing, and because of my new symptoms, he wants to attack it "with 2 guns instead of 1".
He also increased the dosage of my Fentanyl patch again; he's going slowly with it, but I can't express enough how much it helps me with functioning. Already today, I've gotten up and just puttered around doing things I wouldn't be doing because of my pain level.
So, it seems to me, going forward in the immediate present, I'm throwing myself totally at PSP, which is a very good thing. It will also give me some structure and the knowledge I'm 'doing' something about improving my situation, rather than sit and worry about it.
Love to all of you, your loved ones, and your sage advice, as well as just sharing your experiences whether you're the one living with PSP or are the care-taker of someone with PSP. I honestly don't know where'd I'd be if I hadn't found this site, except feeling like a small child lost in a large city who can't find her way home.
With gratitude, respect, and love,
Judy
MN, USA
