Hi all, I hope you are all well.
may dad was diagnosed with PSP recently. His main symptom at present is his speech which is not fluent and sounds straining.
He has a SALT who is trying some breath control exercises with him because she thinks it’s his breathing that is the problem. We just can’t get him to take a SLOW breath in and out. Anyone got any tips regarding this?
I also think the slow breathing would help his stress levels so would like if he could improve this.
Many thanks 🙏🏽
Dear Umzain
Thank you for raising the topic of breath control.
I agree completely that this is an important mechanism with many health benefits. Both PSP warriors and their carers can benefit from slow, deep, controlled breathing.
My husband who had PSP would have many breathing related issues. I believe that PSP affected the natural regulation of his breathing patterns. Like so many things - eating, drinking, speaking, moving, it would often be hurried and frantic.
He also had asthma and keeping this under control was paramount. We used a spacer that had a visible valve so that I could see when he was breathing in. It made it obvious that his breathing was often shallow and fast or that he "forgot" how to inhale.
My husband had difficulty falling asleep and I would always try to lie next to him, deliberately follow his breathing pattern and then start slowing down my breathing in the hope that he would subconsciously start following the slower rhythm. It wasn't fail safe but it worked most of the time. It helped me fall asleep too 😊
Both his physio and his speech therapist practiced breathing with him and taught myself and the paid carer (PA) to do the same. The key principle was to breathe out completely before breathing in naturally and unforced.
The easiest way to do this was to focus on a sustained "Aaaaaah" sound as loud and long as possible. We made it a competitive activity and also used a decibel app to measure how loud he could be - a big feature of LOUD training (see Lee Silverman Voice Training LSVT).
Besides activating the voice, the loud and long "Aaaaaah" would help emptying the lungs for a natural deep intake of breath. This was a big part of preparation for movement as well, slowing things down so that mind and body could be in (better) sync.
We would use this when he struggled to speak, and also if he was being anxious or agitated.
My husband eventually had quite frequent episodes of low oxygen saturation - though no heart issues, and clear lungs when checked.
Deep breathing - and sitting up straight/leaning slightly forwards was always helpful to restore oxygen levels and make him feel better. Only occasionally he needed additional oxygen from a portable concentrator.
We struggled to find a full explanation for the low oxygen though
1) physio observed that he might breathe shallow or hold his breath when trying to concentrate on his walking - potentially made worse by the fear of falling. So we had to supervise and pay attention to his breathing and make him stop what he was doing and remind him to breathe properly
2) I insisted on a sleep study - but got the results back too late to help my husband. The study confirmed he had moderate sleep apnea with frequent pauses in his breathing. This could have been treated with a device that aligns the jaw. I had thought CPAP was the only treatment and I wish I had known much earlier.
Sorry this is a long post. I do believe maintaining healthy breathing and oxygen levels are vital for helping the brain adapt during PSP, so I would love for there to be more research, advice, and support around this.
It would be wonderful to hear how others have tackled these issues.
Hope and hugs🌻 🤗
Bergenser
BergenserHi. Your detailed post is very much informative and useful both for the PSP fighters and their carers.
Regarding breathing, could you please tell us did your husband have it before the onset of PSP or did he develop it afterwards. Also was it asthma or COPD. Were any tests done to confirm what was it ? Please let's know what medicines was he prescribed and which ones proved to be most useful for controlling that. Be it asthma or COPD both create problems with breathing and therefore with walking or any other activity. Both of these can lead to hypoxemia whereby adequate oxygen intake gets prevented.
You have rightly talked about deep breathing to enhance lung capacity for oxygen intake besides being destressing. Sleep study is also useful for ruling out sleep apnea as one of the causes behind breathlessness as you suggest.
I suggest you please consider writing a book on all your experiences in dealing with such an awful diseases as PSP. That will prove very useful for the PSP people, their carers and health professionals. Best wishes
Hi Bergenser, thank you so much for the time and effort spent on your response to my post.
I will definitely try encouraging a full breath out to help my dad to take a fuller and slower deep breath in.
I have tried to ask him to say “aaahhh” to extend his breath out, but this turns into a shout more than anything which sounds very straining on his voice.
The SALT, after what seemed like a very detailed assessment, said that using the LSVT training would not be useful for him and instead she would work on breath control with him but use some aspects of the LSVT training with him.
I also wish there was more research into this area as I really think the breath control is affecting his speech more than anything
Trying to stay as positive as possible.
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