Any benefit from oxygen

[Panda69]

Mum has had PSP for about 5 years and resides in a care home......she fell and broke her hip on Tuesday and had a replacement fitted yesterday ( Thursday ) . Because of her age, 84, she was given an epidural for the procedure . Back on the ward she had an oxygen mask on for about 6 hours and we noticed a big improvement with her speech. Wondering if anyone else has noticed any difference with extra oxygen. Could it help?

[Peter3]

Hi Panda69,

I blogged last autumn about the improvement I saw in my husband after he had surgery on his neck. His voice was much stronger, he chatted to us almost non stop, something he hadn't done for 2 years or more,it was amazing. Sadly, after about 3 days his voice became very quiet again, he spoke far less to us and we were back to the effects of psp.

I think the improvement may be due to some of the drugs that are used during surgery that have effect on the nervous system.

It will be interesting to see if anyone else has noticed changes in psp suffers having had surgery.

Peter3.

[Panda69 in reply to Peter3]

Thanks for that......if mum had had a general anesthetiser I would have put it down to that however she had an epidural plus a relaxant that's why I thought it may have been oxygen. Will try and investigate more but I think we may be on to something.

[Peter3]

I think it maybe the relaxants that have the beneficial effect. It would be good to hear if other people have had similar experiences.

[Panda69]

I don't know if the PSP researchers read these blogs but I will try and contact them with our experiences. Maybe sometime in the future other sufferers will benefit if there is something that could be extracted because the improvement although temporary was incredible.

Best wishes and good thoughts to you and your husband.

[peterjones]

hi everyone g'day to you all\\ i am on a machine at night time until morning this is for sleep apnea

now i find my voice is stronger in the morning but slips away in the afternoon when i get tired\\\ this machine is for fresh air i do not have oxygen as such\\\\\\\ now my question is is it the machine and air being forced in down my nose or is it the coconut oil i would like to think the latter but i would have to leave off one of these products again to try and find out if i leave off the machine it would mean a possible stroke again if its the coconut oil i will just squeek for a couple of weeks

problems all the time problems \\\ have a good day all see yer smile peter jones queensland australia psp sufferer

[Mishymoo]

We too had the same with my mum, every time she had an op on her hip (she got an infection and had about 15 ops/washouts) she would be really good for about 2-3 days! Sadly the infection got the better of her and she passed away 2nd March only a few weeks ago she was only 63 and had only been diagnosed in Feb 2012.

[Hidden in reply to Mishymoo]

Sorry to hear about your Mum, It was only this time last year my mum was diagnosed and she too went recently-25th Feb. We haven't buried her yet due to backlog and a closed chapel and it represents all that has happened to mum as everything was always too late for her. Continuing Health finally paid up last week and due to probate application the bank rejected it so we have another issue with that now! I did however notice that mum would pick up on ANYTHING new medication wise. A classic example is that the last time she spoke was on the day her latest course of antibiotics finished and they must have peaked. She had not spoken for 2 weeks prior to that but suddenly could talk all that day.She never spoke again after that day. So strange.

[jimandsharynp in reply to Mishymoo]

Mishy, When was the ORIGINAL diagnosis on your mom? I mean the one that may have been incorrect before they finally settled on PSP.

Jimbo

[JudyJ]

Huh. Interesting. I was hospitalized in January for what appeared to be cardiac problems. That particular morning before I went in, I was so exhausted, didn't feel like I could put one foot in front of the other, and felt confused.

The only thing that was arrived at as a 'for sure' was my oxygen level was on the lowish side; 93-94. Believe it's at 90 or lower it's considered respitory distress; at my age and all ailments considered, they said it still be running at 98-99.

No matter what they did they couldn't get my oxygen level up, which is one of the primary reasons they kept me overnight. Here in the States, you have too be half-dead to be admitted to a hospital; no joke.

In the ER, they put me on nasal oxygen right away and kept it on. It finally rose to a normal level later that evening and I felt like a new woman; seriously. Colors were more vivid, I spoke above my developing low-tone/whisper only voice, had an appetite, etc.

So despite surgery, I found oxygen is a good thing...how to get it and keep it is the question.

I did have my hip replaced last April, pre-PSP diagnosis, for which I have a question I will be asking on this site.

Take as good care of yourself as your Mum; you need it too.

Respectfully,

Judy Johnson

[Panda69]

Thank you for all your replies....I think that there is enough information for an aspiring researcher to do a thesis on the reasons for post surgery improvement however tempory.

If oxygen alone can cause such a marked change then that seems to me to be a very cost effected treatment for this dreadful disease. Lets all keep asking this question.

You all have my deepest regards and best wishes.

Anne.

[jimandsharynp]

I have to wonder if an ex-smoker who is on oxigen and also has PSP notices any difference when on oxigen.

Jimbo

[Mishymoo]

Jimbo,

the diagnoses of PSP was the first proper diagnoses as before that they didn't have a clue what was wrong with mum and it was only after a fall resulting in 8 broken ribs and a punctured lung that we decided the NHS wasn't going to find out what was wrong so mum went private and within a few months they diagnosed PSP.

[MJ-Mark]

I think this is interesting. I am going to try to get my dad oxygen and see if this works. It really sounds like its worth a shot......nothing to lose!

Thanks

MJ

[Panda69]

Mum will be returning to the care home within the next day or so. She has recovered well from receiving her new hip after her fall. The care home staff have agreed to help me get oxygen for her to try. There have been documented positive results for oxygen therapy so we are hoping to see a difference in her speech. Will keep in touch with results soon.

Anne

[Panda69]

See Journal of Neurochemistry............Evidence for Oxidative Stress in the Subthalamic Nucleus in PSP.

After much research the indications are that oxygen can slow or halt the PSP progress.

Will keep ploughing through and keep in touch with any new information.

Anne