Swallowing and psp

[Fashionable]

My friend who has being diagnosed with atypical parkinsonism but from what I have read I think it's a form of psp doesn't have difficulty swallowing but finds food slips down too easily and suffers a lot with hiccups and indigestion. Has anybody else come across this? He has also suffered badly with rhinitis for many years .

[enjoysalud]

I think the main danger of swallowing challenges is ASPIRATION PNEUMONIA. my son experienced his first bout of aspiration pneumonia 32 months after his first symptoms of PSP appeared (March, 2014.....double vision, fatigue, and slurred speech). He recovered with antibiotics at home. The second bout ( five months after the first) put him in the hospital for 7-8 days (sepsis, aspiration pneumonia and intravenous antibiotics). It led to him accepting a PEG which did not bode well for him.

There are others on this site (with PSP) who are going on 6 years, suffering swallowing challenges, and have as yet NOT had a bout of pneumonia.

Best to you........

[Bettina545 in reply to enjoysalud]

Hi there!

My hub has PSP and wondering what happened re Peg tube? I’m a retired RN and I’m not a fan of Peg tubes when it comes to PSP.

A million thanks in advance😍

Sending hugs

[enjoysalud in reply to Bettina545]

Hi Bettina, my son was instructed to NOT take anything by mouth, all by the PEG. However we all know that one can choke and aspirate from one's own saliva.

My 55 year old son was highly educated, BA (music-UCLA), LLD Boalt Hall, UC BERKELEY Full secondary math credential to teach in the California public schools, passed the Calif CPA exam. His day job was a math teacher. His night/weekend, love of his life job, was as a free lance bass player with top notch artists.

After his 2nd bout of aspiration pneumonia, and with unrelenting constipation, seizure, constant pain with neck dystonia, bedridden,bed sore, thrush, often unable to see (loss of vision), loss of bodily functions and his speech....my son realized he was not going to get better.....only worst.

When he went into the hospital, March 23, 2017, he could walk, he could talk, he had prescription prism glasses, and used the computer for short periods, and watched TV. His Peg was installed on March 28th. When he came home on his 55th birthday, March 30th, all that was mostly gone. He was also in pain from his PEG.

On April 27th he asked that we stop feeding him. Kaiser Permanente Hospice and I both complied. His last PEG meal was April 30, 2017. FIVE WEEKS past the installation of his PEG he died.

It has been two years (next week) since his death. In that time I have gone back and re-examined my behavior/decisions and lack of behavior/decisions. For the longest time I beat myself up for NOT talking him out of his decision to stop being fed or even trying.

I miss my son terribly, we were very very close friends, but I have to ask myself the question WHOSE LIFE IS IT ANYWAY??? Do I serve my needs/wants (of keeping him alive with hardly any QUALITY OF LIFE) or his needs/wants (of hastening the end to his suffering of a horrible disease that is PRESENTLY terminal)?

Margarita, Los Angeles, Calif, USA

[Bettina545 in reply to enjoysalud]

Thank you for your very nice note. I can hear how much you love and miss your son. My husband has PSP and considering it’s such a horrific disease I told him I’m not voting for the Peg tube. He’s not at that point yet. It’s all so difficult and depressing !!!!!!

Sending you positive thoughts and warm hugs❤️

[enjoysalud in reply to Bettina545]

My values vote that it is up to your husband to make the decision. I say that realizing that we as caretakers are left with the brunt of caring and seeing what the PSP is doing to our loved one.

Thank you for your kind note. I keep us ALL in my prayers.

[Hidden]

Every atypical neurology disease has a myriad of symptoms. Each person will present differently. Symptoms may overlap from one disease to another. All your friend can do is take tests to help pin down which disease they have. Even with tests they may get an inconclusive answer.

[LuisRodicioRodicio]

Hi Fashionable!

On my opinion...

*If physicians agree that there is suspicion of a Parkinson-like neurological disease (PSP-RS, PSP-CBD, PSP-P etc.), then I suggest to start an intensive and systematic exercise program including walking, up and down stairs, speech therapy, etc. as soon as possible, trying to slow down eventual muscle dysfunction. One easy activity is to go to the pool and walk back and forth across the shallow end of the pool - forwards, backwards, sideways. It really help for a while. It won't work forever, but it'll work for a while.

Recently (08-2018) and apparently with good results, Rock Steady Boxing exercises applied to PD patients are being tested to newly diagnosed PSP patients.

Rock Steady Boxing for Patients with Parkinson's: youtube.com/watch?v=XC1h4yg...(Not working as expected?)

*Insisting that you chew 15 times before swallowing can help.

*Prevent solids or regular liquids from reaching the lungs to avoid eventual “aspiration pneumonia,” (Besides falls, this is another very important risk.)

•Add thickeners (eg, Resource from Nestle, Thick-it, Simply Thick-Easy Mix, CVs,etc.) to drinks (soups, water, Aquarius(*) orange or lemon or similar without gas, etc.) till obtain a sufficient glutinous liquid. To drink, it is advisable to use a special cup (Ornamin 815) with the chin as near as possible to the chest. Some mango and peach juices have an adequate consistency.

(*) Isotonic drinks are interesting to help maintain blood electrolytes at the correct level.

•The food must be moderately doughy and in small pieces if solid.

• Our speech therapist has insisted that she should not take meals that "deceive" the mechanism of swallowing that is damaged. The foods that “deceive” are those that have liquids and solids in the same bite (eg, some beans with soup or a soup with pasta).

•Check the patient is sitting fully upright to eat and try not to have distractions around while he is eating.

•Making a puree with a hand blender is always a solution, but it is preferable to crush with a fork until a homogeneous paste without liquid and so as not forget the function of chewing. What is not used is lost!

* Hiccups. It can be one of the multiple symptoms of PSP. I suggest consulting the speech and swallow therapist and if he/she do not find anything go to the neurologist.

Hugs and luck.

Luis

[Fashionable in reply to LuisRodicioRodicio]

Thanks Luis