Downhill slide

[Upturned]

Hi all so sorry to be a pain but since diagnosis I seem to be on a downhill course. I notice in myself changes I know are real. Choking and being unable to function. Is this normal.

[Dadshelper]

These diseases are progressive, so you will have some degeneration of various functions as time goes on. No two people will have exactly the same symptoms. Difficultly in swallowing and associated choking/coughing are common. I would bring this to your doctor's attention, maybe they can do a swallow test.

Ron

[LuisRodicioRodicio]

Hi Upturned!

I'm sorry PSP has entered your family.

The suggestions of my "chat" colleagues are wise and based on their different experiences. In my case they have been very helpful.

This disease manifests itself in a similar but different way in each patient. The participants in chats like this offer practices and solutions to learn from, and through the "trial and error" method, achieve a quality of life with interesting moments despite everything.

I am not a phisicyan. During the 7.5 years in which we are living with PSP, I have been collecting information on the PSP stages as well as solutions and experiences for the different symptoms that may appear based on our own experiences and those of other chat members to offer everything as a suggestion to PSP patients and caregivers. The information is done with good will and with the best technical criteria that I can provide, especially thinking of the support of caregivers.

Wishing the best for you and your family and if the documents with our experiences and our solutions can be useful, do not hesitate to let me know to send it by private mail through this chat.

Hug and luck.

Luis

[Hidden]

Speech and language therapists can help with swallowing. You can ask your doctor to refer you.

[AJK2001]

Firstly do not apologise, you are not being a pain, this is what this site is all about, asking questions, trying to gain understanding & sometimes just having a moan or a rant. So please no apologies.

Choking/swallow problems are I'm afraid very common - you may need to thicken your drinks or move to a softer diet. Get a referral to a Speech & Language Therapist (SALT) as they can advise on this & give you exercises to strengthen your speech muscles.

Not sure what you mean by unable to function. Is this physically or mentally? Both can happen with PSP/CBD. Unfortunately not much can be done to stop this but equipment or coping strategies can be used to help. If it's physical problems OT for equipment & Physio for exercises - use it or lose it. If it's more cognition then asking people to keep questions short & simple & giving you plenty of time to reply helps.

Keep asking the questions.....

[easterncedar]

HI, upturned. Your name says what we all have experienced, one way or another, so please know we are here to help if we can. This is a good community. My guy had very good effect with exercises the speech therapist gave him to strengthen his throat muscles, so choking wasn't as much a problem, though when he did, he found raising his arms above his head helped. The overall progressive loss of his ability to work, to build and fix things as he used to do, was a trouble to him. What you are experiencing is real and normal. Peace, ec

[racinlady]

You're never a pain on this site. In fact, I always found info from a patient invaluable. It helps us caregivers have a little more insight and from that comes empathy.

One thing that we found helpful for early swallowing issues my husband had was that carbonated drinks like Pepsi worked as well as thickened liquids and were more palatable. I think the bubbles sort of act like a thickener.

Pat

[Railfan]

Greetings Upturned. Your changes will continue. Sometimes we plateau for a while and other times we slide faster downhill. Many people report a fast slide immediately after a health emergency such as a bad fall or pneumonia. I'm just ending a bout of the flu, that had me bedridden for a week, but haven't seen a downturn with it.

In myself, I have seen a slow progression of swallowing problems. My swallow response seems intact still, but there is a very real time lag from when I want to swallow, to it beginning the swallow and then continued slow as the muscles begin to push the food down. Dry items like breads, cakes and crackers are the worst offenders. Apart from holding liquids in my mouth for a short bit, I don't currently have any problems with them.

Tony

[SewBears in reply to Railfan]

Hi Tony,

I’ve started cooking so differently than I used too to help keep foods moist. Butter is our new friend. We don’t do dry toast but I can dip the bread in egg, milk, cinnamon, vanilla and put the bread on a griddle. Serve with warm maple syrup and hubby loves it. Whenever I can add butter, I do. It helps the food go down and tastes great too. I figure the extra calories are worth it to help protect hubby on the days when he isn’t interested in eating at all. Fortunately those days are rare!

Crackers that are soaked in soup or broth is also an option if you haven’t tried it.

Rice is another offender. One that I haven’t figured out how to make moist so I don’t make it anymore.

Anyway, just food for thought...

[Red1990]

Hi Upturned,

My mother was having a bit of swallow problems as you described about a year ago. I found a fabulous speech therapist in our area with a can-do kindof, yet realistic, attitude.

The SLP is a great coach in swallow technique and best practices, but also gave a number of exercises for home. She utilized some of the LVST and this little AmpCare gem. As Tony described, the swallow function muscles slow down response rate. AmpCare strengthens and speeds up.

Based on what I have witnessed with my mother I would offer the following guidance:

- Contact AmpCare swallowtherapy.com/

and ask for names of ESP certified SLPs in your area.

- Compare SLP ESP names with the LSVT certified SLPs.

lsvtglobal.com/LSVTFindClin...

- Find a dual certified in your area if possible

- Call the LVST/ESP SLP in your area, chat to see if a good fit for you and PSP....I fired a Debbie Downer SLP and passed on 2 others based on their hopeless, bleak attitude.

- There aren't many studies on PSP or even therapies to prove that they work, but that does not mean that it isn't effective..just hard to prove. It is a progressive disease, but you deserve a therapist that will recognize swallow therapy as instrumental in giving you the best quality of life possible.

- After you find the right therapist, your primary care should write referral for therapy and probably a modified barium swallow test.

- Don't just leave it to doc to refer, do your homework. I find that the docs don't know much about this topic.

- I gather from PSP sites that PSPers aren't finding their way to the effective AmpCare trained (ESP) speech therapists.

- If your selected therapist isn't in network, you can probably use ESP/LVST certifications as argument for out-of-network need.

- Don't get lazy with the exercises at home, vital.

A year later, my mother's diet hasn't changed too severely and ..fingers crossed no aspiration pneumonia, yet. This success won't be forever, but I feel well worth our efforts.

Good luck to you!

Karen