Does anyone know if having PSP brings with... - PSP Association
Does anyone know if having PSP brings with it a compromised immune system?
Hi Judy J, I'm not a medical expert but can just say that my husband with PSP has never been "ill" since diagnosed in 2010. I did fear he had a chest infection once but was put on antibiotics straight away and it never developed. We see a lot of our grandchildren, who don't come if they are ill but I've had several phone calls from my son when they have returned home, saying they have developed colds, tummy bugs etc soon after and he was worried they may have given something to their grandad. I suppose it is another thing that depends on the individual. I do think good nutrition is very important for all of us so we have plenty of fruit and veg and a balanced diet, mashed or liquidised for my husband.
Nanna B
Thanks for your reply and info.
I've never asked this question to my Doc so I turned to the best 'experts' I know
Perhaps the reason I frequently get colds/flues and then have a hard time shaking them off is the fact I spend (too) much time in and out of medical facilities and Doctor's offices...now, that makes sense!
Judy
Hi Judy
PSP (or many similar neurological conditions) do not affect the immune system. It's usually the other way around, with the immune system affecting the nervous system. Hence, PSP may be exacerbated during periods of infection (UTI's and aspiration pneumonia etc) due to the release of certain chemicals (called cytokines) that activate certain brain cells (microglia) which in turn affect the PSP process.
You are right about visiting medical facilities and clinics and doctor's offices.....they are obviously breeding grounds for viruses and bacteria.
Good to hear from you again......take care.
T.
Strelley, That makes total sense. Thanks.
Thanks, Strelley, for this information; new and interesting. And, it makes sense. Good to hear from you again, too.
Judy
Your comment/info makes even more sense now.
My oldest daughter started working at a facility that provides services for children with autism at the end of April. She works with pre-school-aged children.
(Am I repeating myself? Haven't looked thru my comments; I do that frequently these days; if so, ignore this post...:))
Katy, my daughter, has been exposed to a variety of viruses and became ill shortly after starting there. No surprise. Young children and bugs. Even staff were dropping like flies.
Since at least mid-May or earlier, until just a week ago, all 3 of us got gob-smacked by colds with fevers, stomach flue, etc., and each of us went thru 2 rounds of it.
I finally started feeling better and shook off the last of this stuff but my PSP symptoms took a big spike. Figured it might be because I was really worn-down/rung-out from being sick for at least 3 weeks.
This is what you're referring to, right?
Judy
Hi Judy
Just having a viral infection can knock you about even if you did not have PSP. However, my original post was to make PSP sufferer's aware that their condition may (not always) be affected by such infections. I don't want to be technical again, but there's been many published papers showing that (peripheral) inflammation (often caused by bacterial/viral infections) triggers exacerbation in the brain's ongoing damage in several neurological conditions (a lot of work has been done on Alzheimer's and Parkinson's - hence it applies to PSP).
There are many examples of PD getting worse with infections, even with gastro bugs. It's been suggested that such inflammation has been a trigger in starting a predisposition to PD.
So the practical bottom line is.....if you have a neurological disease like PSP avoid infections as much as possible (sounds obvious anyway) because they might trigger a more rapid progression of the disease.
Hope this makes sense, and take care....
T.
It does makes sense; thanks for taking the time to respond. I will step-up my hand-washing and other common sense matters of self care.
hi Judy
good that you are posting again
how r u really??
please let us know as we all care about u and everyone on the site
to ans wer your question i have had a few UTIS since dxd but am taking a med at night to reduce the night time visits to the toilet and so far (for the last 2 yrs )have not had any further UTIS
I have had a chest infection cured iwht antibiotics but am now suffering from hay fever i think 4 the first time ever (aged 68) which is weird i DO have allergies to feathers and h dust but have never had hay fever b4
such is life - like the breast cancer which i had and have beaten along with other probs in my health over the years
so i do not think necessarily there is a link bet ween PSP and a compromised immune system
lol jiLL
My husband gets nothing.
I've had numerous colds tummy upsets and even noro virus and thankfully doesn't seem to get anything
That's great. None of us with PSP as well as caregivers need anything extra do deal with, that's for sure.
Thanks, Joey, for responding to my question.
Judy
MN
USA
I have wondered if there is ever a link with a compromised immune system as my father also has a rare skin condition called Bullous Pemphigoid, which is an autoimmune disease that only affects 4-5 people in 100,000 in the UK. It was diagnosed before the PSP. It's probably just that by some fluke he has two extremely rare conditions. Really bad luck!
Huh. Definitely bad luck. Go figure.
I also have a serious (potentially deadly) metabolic disorder I was born with; X-linked meaning it can only come from the Mother/Mother's side of the family. Short explanation; 6 enzymes in the liver that breakdown protein. The most important one is OTC (google if interested). If it's defective, protein doesn't break down properly and ammonia develops and circulates thru the system causing havoc.
I had no idea I had it til both my daughters were born and diagnosed with it.
1:80,000 occurrence, tho they believe 1/3 of SIDS deaths are because of this. Hard to diagnose and most hospitals don't screen for it at birth.
My girls were horribly sick from birth on. Took them to Doc after Doc in the Minneapolis/St. Paul area. They were not diagnosed, misdiagnosed, etc. time and again.
Got the down to Mayo at age 5 and 6 and were properly diagnosed. Several more years of unwellness til they finally stabilized.
More to this story but this is plenty. It has absolutely affected me all of my life just didn't know what 'it' was, nor any doctor's I saw. The diagnosis answered a lot of questions for me. At the same time, I lived with unbearable guilt regarding my girls for years, tho it wasn't rational.
...I understand bad luck...for sure...but I also consider us 'a plane crash'. Very high odds to have either OTC or PSP, especially both pertaining to me. But I also consider us 'a plane crash' in that we survived tho not always looking like we would, and are doing as well as we are.
Judy
MN
USA
Good to hear from you, Judy. I hope you and your daughters are okay. Our doctor says that stress can make a psp patient more vulnerable, as it can for anyone. Stress? What stress?
Are you still doing the exercise program? All the best, Easterncedar
My Doc has pressed, emphasized, and preached the importance how adversely stress affects PSP from the get-go. He's great at really encompassing the mind/body connection.
He encourages me all the time to illuminate stressors, even family members, if they are a stressor, from my life. And clean-up any unfinished business that's a stressor. Finally, as long as we are living, stressful situations will find us, so learn to cope with it better and/or simply slam the door shut on some situations if necessary. It has helped.
Yup, I'm done with they PT. Helped me SO much. In fact, I'm going back something that is a passion of mine, which only started about 10 years ago.
Comedy. Stand-up. Those I'm not doing at least yet, but am excited about an Improv class I start every Wednesday thru July. YEA!!!!! I've taken several Improv classes over the years. It's much harder than stand-up comedy and is the polar opposite. With Improv, your mind has to be cleared of all muck, worries, and be totally present. As an over-thinker, a big challenge for me. I contacted the owner of the Improv Comedy Troupe, let him know my situation, and received the most supportive, warmest email in return with a "just go and have fun!". And those classes are. Playtime for adults. Feeling physically sturdy to do it, so I'm going for it.
Have to take full advantage of these plateaus of stability, you know?
Best regards back to you.
Judy,
Minnesota
USA
...meant to say eliminate stressors, not 'illuminate'...that would be stupid, eh???
Judy
Great news!! Good for you, Judy. That's exciting - and impressive. I know what you mean about improv requiring that your mind be free and totally present. I used to have a friend who did it, and it was amazing to see how creative folks could be when they are on the spot! I'm really glad to hear that you're enjoying yourself. Brava!
Judy, way cool the improv class! If not now when right?! Improv is living in the moment with absolute truth in any situation-an exhilarating high for sure. Learning and honing new skills are supposed to stimulate your brain. Keep us posted GC
BTW, thanks for responding...I believe I owe you an email...even if I don't, I will anyway; how 'bout that?
Always really happy to hear from you. You are amazing. My guy starts rehab soon, something you inspired me to go for. Thanks.
Judy, I'm sure it depends on the individual. My Sharyn only had one UTI in six years but others with PSP seem to have a constant battle with them. I don't think PSP has been found, in my readings, to affect the immune system. Perhaps others have an thought. Jimbo
I asked my Doc once if I now fell into the category of "it's not safe for young children or the elderly" if that applied to me/persons with PSP. He said yes, so I sort of assumed it suppressed or compromised the immune system.
Hi Judy,
Good to see you back on site.
To add my answer to your question. My husband seems to have a very good immune system and hasn't had a cold, flu. UTI's since diagnosis. He has had two chest infections but they were over a year ago.
best wishes.
Peter3
I noted all the replies to this question. In contrast we are the other way round. my wife has had 6 pneumonias, and over 20 UTIs over the past 15 months. In our case there may well be other conditions, such as allergic alveolitis which predispose to the infections, but none of this helps the PSP, which has rapidly progressed over the past year.
Very sorry to hear this. It just makes 'hard' even harder, if not unbearable at times. My heart goes out to both you and your wife.
Hi Judy. Its really strange but up until a year before my diagnosis I was wracked with colds almost one after another .It was ridiculous .Think throughout my life I must have had at least four colds a year with chest infections etc and then all of a sudden nothing but a bit of a blocked up nose. Still haven't succumbed to another cold yet. We're talking at least two years ! I do take Korean or Siberian gingseng every day .Could be quite beneficial but who knows !!!all the best to you
Thanks for replying, CheekyChops. Sorry you had to endure all of that. Thank you also for your suggestion of Korean or Siberian gingseng. I will look into it. Could be another 'tool' to add to my wellness kit.
Judy
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