Staying Ahead of PSP

[randjack1234]

My wife was diagnosed with PSP in 2012 at age 60. Here is a list of treatments we have employed to maintain a quality of life for her. As the disease has progressed I have taken actions listed below to fight the battle.

Vision - upward gaze ---Prism Glasses

Swallowing - Speech therapist, application of electrodes to neck to strengthen swallowing mussels

Mussel stiffness - Bowtox injections; sessions with physical therapist to train me on giving stretching exercises ; massage therapy weekly; Parkinson's exercise class

Lack of speaking ability - Speech Language Pathologist - Speech Technology (Control Bionics) utilizes a touch screen (or motion activated) tablet mounted on adjustable stand

PEG Tube for feeding when she could not longer swallow. Very easy to use and it took the pressure of me regarding preparation of meals she could swallow..

I hope this helps someone navigate.

[LuisRodicioRodicio]

Hi randjack1234!

Thank you for sharing your experiences.

Hug and luck.

Luis

[SewBears]

It sounds like you’re doing a fantastic job! She’s a lucky lady to have you for a caregiver. I hope that you are taking care of yourself too and getting a break now and then, yes?

Keep on keeping on...

❤️ SewBears

[randjack1234 in reply to SewBears]

Thanks.

Yes I have a care giver and friends that come and stay with her while I go skiing.

[nergeshb]

Wow! I’m speechless .... she sure is very lucky to have you and the facilities she has. This sure is a useful lot of information for all of us. Hope you too take great care of yourself. Thumbs up to you both. Take care. Lots of love to you both

[PDDJED]

Useful list. Something else we found helpful was excercise which we achieved via throwing a soft ball around the sitting room. My father was a sporty person prior to contracting PSP so enjoyed just throwing and catching a ball. For a long time he has also played ping pong from his wheelchair! They excercise seemed to help him sleep properly at night.

[Signor]

Hi, with the botox injections, how often were they done, I am in the uk, and drs here are very reluctant to use this treatment. Cheers.

[randjack1234 in reply to Signor]

Our first injection series was Dec. 10 and we are due for the next one this week. The Dr. started out giving a rather small dose because every patient reacts differently to the Bowtox. It could over relax the mussel rendering the patient in a worse condition. Our Dr. is part of a rehab hospital which treats folks with a variety of neuro conditions. I suggest you find a Dr. in a rehab facility.

[daddyt]

Love your attitude and dedication, some may find your actions helpful - especially for those just beginning the journey. A group friend gave me that great advice "try to stay ahead of it" six years ago, and I try everyday... will continue to do so, until my last breath. The first survivor of PSP is out there - do whatever you reasonably can.

Tim x

[JubileeRanch in reply to daddyt]

Tim, optimistic as usual....and yes that first person to beat this horrifying disease is out there, lets keep trying and doing anything and everything to beat this.....

I pray to the Lord to give me the direction I should go and the path I should travel to help Bob have improvement that would lead to recovery....

[Cazsanders]

Thank you for proving such a complete list.

[SusieTess]

Thank you for your helpful input...one think I might add from an experience we had just last week...my husband fell and had to be taken to the ER which was jammed beyond capacity due to flu here in NY...he was seen but lay on a stretcher in the Hall lined up with some 20 other stretchers... after 2 nights of waiting for a bed he became a completely different person ...totally confused, incontinent, not knowing his name, rambling not eating or drinking....he was hydrated by IV....after being transferred to a quiet room and within a few hours, I saw some signs of improvement, within 24 hrs he returned to being himself again...so the conclusion for me is that PSP patient s can’t tolerate bright lights, noise, bells ringing, interns and constant disturbances hour after hour...I have also noticed a restlessness start when we go to a movie ..

Hope this experience is helpful to others..

Take care, Kathy

[JubileeRanch]

Thank you 😊 very useful information 💜

[Red1990]

Hi Randjack,

Please tell me more about your experience with the electrode swallow therapy. Did your wife have just a course (several weeks) or did she return when swallow quality began declining again.

We had great success with similar therapy using AmpCare, but concerned what happens next. What happens when swallow declines again?

Thank you.

- Karen

[randjack1234 in reply to Red1990]

We returned for swallowing therapy for about 3 - eight week sessions. Sadly her muscles weakened to the point where the therapist recommended we stop and look into a Peg Tube.

The Peg was put in last August. First it was a great relief for me in terms of meal preparation. She did not do well on the formula for the first couple of months and we had to get one with lower fiber. She as getting terrible cramps and diarrhea on the initial formula But then we switched to a lower fiber blend...and she had constipation. Then I began introducing a small amount of prune juice for a couple of the feedings and that has evened things out. She has 4 feedings a day 9AM, noon, 5PM, and 9PM. Very easy and quick.

[SewBears in reply to randjack1234]

Thank you for sharing your experience. I hope that she continues to do well on the peg. Congrats on finding a combination of formula that works. I’m sorry her muscles have weakened to need one. What a difficult road to be on. She’s fortunate to have you.

[Karynleitner]

Can you tell me what effect the Botox has had.?

Also, does the peg tube seem to agree with him.?

I’m worried about digestion and diarrhea .

How long has he had the peg?

Thanks for your help.