Hi my husband went into hospital with an infection he was very ill now since infection is clear he has not been able to say anything o

[Kris1983]

Only diagnosed in August 2013 with psp has anyone else experienced doctors are baffled he is 64 kris1983

[Hidden]

Hi Kris1983

Sorry to hear about your husband's condition.

Often when PSP (and other neurological disease sufferers) have a bad infection it may cause some of the symptoms of that disease to progress more rapidly. It is possible some improvement may occur later, but probably not return to the condition before the infection.

{A technical explanation for this possibility is related to infections initiating inflammatory responses. Once this occurs, there is often the release of certain chemicals (like cytokines) that activate certain brain cells (microglia). These brain cells then trigger exaggerated responses that cause further neurodegeneration. This has been shown to be true in Parkinson's - hence PSP - and Alzheimer's. In fact, with Parkinson's a lot of this neurodegeneration takes place in the already damaged substantia nigra, an area that controls movement.

If a doctor was aware of this fact, they might suggest non steroidal anti-inflammatory medication in conjunction with antibiotics at the commencement of the infection. Such medication has been shown to have a neuroprotective effect.}

It would be interesting to hear from others (carers or PSP/CBD sufferers) who have had a severe infection and one or more of the symptoms seemed to worsen quite quickly.

All the best

T.

[NannaB in reply to Hidden]

Hi T. 5 weeks ago my husband developed an upper respiratory tract infection. Fortunately it never went to his lungs as our GP put him on antibiotics immediately. A few days later he developed a pronounced lean to the left. He was difficult to push in his wheelchair as I couldn't keep him upright and feared he would tip over, sitting on his stair lift became hazardous and walking even a few steps with his walker was hard for me as I was virtually holding him up. For the first time I had to liquidise all his food, even porridge. His cough improved after about 2 weeks and during the last 6 days he has become upright again, is walking with his walker but without me holding him and he can now eat more or less what he ate before, food cut small or mashed but not liquidised. He can even manage soft filled sandwiches with the crusts cut off. To see him deteriorate so suddenly was awful. One friend who came to visit rang me in tears when she got home as she thought he was nearing the end ( not a very helpful phone call). I know what is to come but for now we are still making the most of every day as that little "blip" reminded us to do whatever we can now as tomorrow we may not be able to.

Nanna B

[jimandsharynp in reply to NannaB]

I agree with you Nana, do it now!

[skhan017]

I am so sorry for what you are going through. I have read that speech does go as the condition progresses. In my father's case - it went after his first aspiration pneumonia. We had to come up with different ways to communicate - ie. squeeze my hand if you are in pain.

[jimandsharynp]

I've found with my wife that speaking can be accomplished but still she doesn't do it often. Only if I prompt her by saying something rhetorical like "Goodnight Sharyn, love you". and when she doesn't respond I say something like "Yes, goodnight Jim love you too". She will chuckle and say goodnight Jim. I've found that if I ask a question and she doesn't answer I say "I'll take that as a maybe" she will respond yes or no. Often it's as though it is too difficult for the mind to sort out the words and the mouth to speak them no matter how much they want to speak. Jimbo

[Hidden in reply to jimandsharynp]

I agree! With the muscles not responding to the brain it makes it an enormous effort and mum condensed her answers to very brief but clever and witty sentences. Incidentally 2 weeks before she lost her battle she had an amazing day where she could talk really well but never spoke again after that. The only thing I could attribute that to was that she had come to the last day of a course of antibotics. That was what finally made the gp agree to prophylactic antibiotics but it was all too late as usual. Best wishes x Dianne