Swallowing: A Documentary
Progressive supranuclear palsy
Cool videos! B had a speech path come in and she said she "doesn't do that" except to say short quick sips....which works,...... sometimes.....but he cannot cough very well its more of a "huh", I wonder if they will help with that situation"
Thank you, mindovrpsp. Hows your dad doing?
He doesn't like me talking about it around him as it depresses him. he kinda just wants to let it run it course, he seems a bit hopeless.
seeing the doc tomorrow, I think they are gonna increase his co-beneldopa. The private doc has all but diagnosed him. I think the increase will convince the doc its psp. I have bought curcumin and ubiquinol for him. But not sure if we should start him on them the same time as the increase of co-beneldopa. May increase the chance of a poor diagnosis.
im just getting my list of things to point out to the doc finished.
We have outside stairs leading to the b&b rooms cos they are separate from the house. my dad can still cook breakfasts but he needs to go up and down those steps everyday and it scares the shit out of me. Sometimes I think his heads gone. I've seen him freeze and gaze once. His swallowing is not great. He's always trying to clear his throat. He's about to rebuild/upgrade his computer for the last time. i really hope he's capable.
Yes. B doesn't say anything, but I don't want to over talk his condition....it's got to be depressing.....by the way depression can be a symptom of this disorder.
TELL THE DR TO A GAZE TEST This test uses a sash with horizontal stripes about 1 every 8 inches. the dr will ask dad to hold head still, keep his eyes on just one stripe; watch it as the dr 'roll's' the sash downward.....if dad cannot due to: head movement to assist the eyes; eyes not being able to stay on one stripe and or not being able to continue the focus for a normal length of time; this is a definite sign of psp. I told doc that it was psp and when I did, he got the sash out and tested Bruce's downward gaze....very limited....now it is gone....and thus cannot see his food or books etc..
DO A GATE TEST they just put a control belt on him and ask him to walk and turn etc. They;ll watch any freezing of feet or steps etc. and of course stepping and turning skills.
They also push him backward to see how well he can control his body from falling. Dr diagnosed him immediately as psp with balance control. This was drs 2d patient ; last one was 6 years prior to Bruce.
B's GP dropped him. Which was fine as his new gp is a doll!
Well I'm sure I did not tell you anything that you didn't already know , but just in case. and Baby, if you have to increase his eldopa (sp) , it may not work. I hate to be the barer of bad news but psp is a cranky stingy and childish disorder that does not like to be told what to do or share with others....thus drugs that work for others won't work for psp.....
Not withstanding cannabis and other chemicals should be continued to be researched. There is a cure or a drug to slow the effects and people like you need to continue to search for it.
Good luck tomorrow, Give dad a big hug for me
Just an after thought:
I wished that I had begun a video of B when we first were diagnosed. I did not attempt to document his 'progress'
I read your post again.....I don't mean to be preachy but sometimes things just come to me . I believe that our spiritual self is more important than our earthly self and must be taken care of just as much if not more than our physical self. So here goes.....this is for your dad
For whatsoever things were written aforetime, were written for our learning, that we through patience and comfort of the scriptures we might have hope. Romans 15:4
Therefore we do not lose heart. Though outwardly we are wasting away, yet inwardly we are being renewed day by day.
For our light affliction, which is but for a moment , works for us a far more exceeding and eternal weight of glory. So we fix our eyes not on what is seen, but what is unseen, since what is seen is temporary but what is unseen is eternal.....IICorinthians 4:16-18
How did your dad do at the doctors?
They just upped his co-benldopa (madopar)
Now we wait for them to diagnose.
doc couldn't answer any questions. Need to wait to see specialist.
Bummer you have to see yet another dr. Does the dr your dad saw, have any familiarity with PSP? Well keep on keepin on. Hope the meds work out for him...
thank you by good exercises . I thought I had invented some of them . been getting John to do them with me for ages . learned a few new jones though. keep them coming
Wish I had had seen these 9 months ago, too late now as Margaret very little swallow even saliva causes choke. She had PEG/RIG fitted 5 month ago relieved the symptoms but not a cure. Tried some of the exercises but not very successful as M got tired very quickly. Thanks for the info. Tim
Has any PSP patients/carers been exposed to the uses of this VitalStim at Therapy?
None that I can find. I'm just posting what I'm finding as I go.
It may help with swallowing but i doubt it would help in getting the function back.
I agree, it exercises may/will DELAY some of the deteriorating of swallow ABILITY as it is not muscular more executive functioning.....
VitalStim machine is very expensive thus I think it something a speech therapist would have....Not the sp. th we had but maybe a good one....
Home Health Care, speech pathologist, came out today. She had one of the machines. She said that it has helped with her patients doing the VitalStim with the swallow exercise. She said it speeds up the recovery process. She is going to start using it on my husband next week. Thank you for telling us about it on here. I would have not known w/o the web and video sites.
Thnx man, keep us posted 👍
Any feedback on the Vitastim?
My husband has begun using the Vita Stim stimulation method of swallow therapy. I asked therapist if this could be bought and used by patients. She said one must be certified in Speech Therapy (or other type of medical field needing this in their practice) before they will sell it to a customer. This may only be true in US....but since that's where I live.....What it does is give a person a contraction in the throat. They then must swallow as they contract...this method is like lifting weights...the harder the contraction the stronger the muscle gets.....Poor B could hardly do it. I am going to post exercises that he has been doing...I hope that is not infringing on some sort of copyright laws....sorrry.....Nat'l Speech therapists
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