Due to PD i am down to less than 48% capacity in my lungs...............my own mother will not wear a mask around me. I AM IMMUNE COMPROMISED. I live in western colorado hell.................hope your all better off...........aT THIS STAGE OF pd > THAN 80% of us die of respiratory issues.
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You can wear a mask around her.
Not the poiint but i do.
That is what is happening in North Idaho. There's more and more infection and there's less people, wearing masks. I don't understand it myself. Sounds like she does not believe in the virus or how bad it can get.
Might it be that you have something else? As far as I know (from experience, formal medical information, informal discussions with PwP) PD is not a respiratory disease
use google anfd read Dr. Parkinsons own comments when first desribing advANCED PD "METHINKS ME PATIENTS CANT BREATHE"
researchgate.net/publicatio...
parkinson.org/Understanding...
pubmed.ncbi.nlm.nih.gov/285...
outthinkingparkinsons.com/a...
As it turns out respiratory issues are very common in mid-late stage PD.....i have a team of Neuro Docs ........6 of them....at University research hospital.......i have been dealing with these and the hospital with referrals to National Jewish, (premier respiratory hospital) my grandfather had/has PD my uncle my cousin, and my brother, I moved in a person with PD stuck in a nursing home, he also has PD induced COPD. Hundreds of studies and posts on Sudden Resp Failure in PD. I would suggest before folks "decide" things about PD they attempt to research first but thats IMO. If people with PD dont educate themselves fully then they cannot direct their care accurately nor can they make relatively accurate statements about thier own disease . Make a list of smooth muscles in the body.....PD effects those, including sphincter muscles such as in the eye, intestinal tract, throat, swallowing, erectile issues, lungs, etvc etc etc etc. I started PD as early as 20 yrs ago at age 33 so i will naturally exhibit a fuller range of symptoms then say someone diagnosed at age 75. Research supports all of us. cheers!
I suspect that the tendency to develop pneumonia (and sepsis/ARDS as a result) is due to autonomic failure which causes dysregulation of the immune system - but that's just speculation. Immune dysregulation could result directly from alpha synuclein pathology in immune cells ... and after doing a quick search, it looks like there are some research articles on just that topic that I should read.
Anyway, I'm so sorry your mother is being that way. It's okay to distance yourself from family members who would cause you harm - I have had to do so with most of my blood relatives.
thanks............but respiratory issues with pd have been well established and blocked i should say by the AARP here in the states.............its very common knowledge ..........
I agree that respiratory issues are a serious problem in PD. I was offering a physical explanation for the cause since I think the conventional explanation - swallowing difficulties cause aspiration which causes pneumonia - is inadequate to explain the frequency and severity of lung infections.
I don't understand ' blocked by the AARP' - does AARP refer to American Association of Retired Persons?
AARP has been hesitant to admit PD can kill you. Rigid chest muscles and rigid diaphragms both levodopa responsive + normal ""swllowing issues......i have a neurosurgeon or two that concur. cheers!
That's upsetting to hear. It seems like a lot of sources try to put a positive spin on various diseases so as not to make people pessimistic, but I prefer honesty. Perhaps I should reconsider renewing my AARP membership.
Going public and admitting that a disease is deadly practically requires that the congress etc to allocate money towards said disease. Its like putting an animal on the endangered species list......it literally requires $ and Action. Cheers!
Hello beehive, point taken, forgive my ignorance about the link between breathing problems and PD, despite the existence of google 🥺
LOL... making your point in one or two reply posts is normal, BUT in addition starting 3 new threads to tell me respiratory problem is a symptom of advance PD? 🥺🥺🥺?
the website wouldnt post my thread so i kept trying sorry........but thread vs suffocation...............:(
Grumpy, just let her be😇. As Parkinson's sufferers we seldom act like normal people. We are all guilty😅
Supplement with Vitamin D3 (take with K2 for heart), Zinc and Melatonin (at night). If you are showing symptoms take some low dose aspirin. All increase the chances that you won't have a strong reaction to it.
Yakult might be helpful; there was a small trial showing it reduced rate of respiratory tract infection in healthy people. Japan has 50x lower per capita death rate compared to the US. There's a lot of other things that could account for that, though - esp. near universal mask wearing. One researcher attributed the particularly low death rate in a particular region in Japan to the popularity of natto eating in that location. There's apparently been a run on natto in Japan as a result and I guess that's why the mail-order natto spores I buy are sold out.
Sulforaphane (broccoli sprouts) might also be helpful as it decreases expression of TMPRSS2.
If she is not going out and mixing perhaps she feels its unnecessary. Is she? x
trump rallies ,multiple churches, mega churches every week, doesn't believe in vaccines and thinks corona is made up. cheers.
oh dear - again, so sorry you are having to deal with this.
It's cult-like and also a form of mass hysteria.
sorry about overposting threads ...when your having dystonic storms in your chest and lungs and heart palps you become , or i do, desperate for understanding as we end up doing it alone.........i apologize for that.......may you all have a peaceful night with no waterboarding......those of you with advanced young onset understand im sure.......thank you.
Just an idea, have you tried low dose Naltrexone? You never know it might help. I've been on it for about five -six years now. Lots of information on Google. I get my prescription 50 mg of Naltrexone and dissolve it in 50 mL of water I use one of those larger plastic syringes and withdraw 3ml and just squirted in my mouth. It doesn't make any difference when you take it, whether it is in the morning or in the evening. I keep it in the refrigerator.
no i havent.....thanks! ill try that! cheers!
Hi beehive. Let me ask you a simple question. Has she treated you well in life otherwise? If the answer is yes, then just ignore it. Mothers always mean well and rare is the one that wants to snuff the life of her own child out.
CDC recommendations don't specify mask wearing of cohabiting family and as long as she wears a mask when going out and takes all other precautions such as hand washing and social distancing when outside, you should be good. You need her to help you.
My 75 year old mother takes good care of 55 year old me and the only thing I berate her about is how unfair life is. I should be taking care of her, not the other way around.
She doesn't wear a mask around me either but as someone else pointed out here, it is not an issue because she doesn't go out. My mom has not left the house since March!
I am so sorry to hear about your lung capacity, being less than 48%, beehive23! My wife has had COPD and heart bypass, and heart attacks, that have severely compromised her lung capacity. There are days that I have issues of shortness of breath, which could be partially because of Parkinson’s Disease, that I’ve had, for nearly 20 years. So, we both wear masks quite a bit, and try to be thoughtful of each other’s problems. So, I fully understand, only too well, how you feel about protecting yourself, and having people wear masks, because of your compromised lung capacity! Try to hang in there, and not let yourself get overly upset about this, because that could cause anxiety, which just makes things worse! Take care!! Thanks for sharing on this forum!
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