Not Sure If My Husband is Declining - PSP Association

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Not Sure If My Husband is Declining

Quarter profile image
10 Replies

Hi, I have been a member of this group for at least a year or longer but, have not written much. My husband John is 72 and was diagnosed with Parkinsons about 3 yrs ago and changed to CBD about a yr later, after not responding to Parkinsons drugs. He has declined steadily ever since however, in the last 4 months hes gone from being able to get in and out of the shower on his own to frequent falls and pretty much in a wheelchair all the time. He developed a cough about 3 weeks ago, we went to the Dr and she called it a virus as he had also developed fever blisters in his mouth. A week later went to ER negative chest Xray and blood works ok. He is still coughing alot of clear, thick mucous and cannot hardly talk at all. When he does his voice is weak and he gets out of breath. He has always had trouble finding his word, since the beginning of all this but, this is different. He has also started moaning and groaning and making some kind of noises all the time. Very fitful sleep and usually ends up sitting in his recliner through the night. This is the saddest thing I have ever gone through and i feel like hes going away right before my eyes. I'm afraid hes going to aspirate with all this coughing and phlegm. He doesnt seem to have trouble swallowing though. Maybe it is just a virus but I worry that it's part of this whole terrible thing. Thank you all for being here and I would appreciate any thoughts. Thank You Paula

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Quarter
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10 Replies
kenh1 profile image
kenh1

There is a lot which is very familiar to my wife's journey with CBD. The only difference is that all the way through she slept well and never had disturbed sleep. Let's hope it is just a virus. Love & prayers. Ken

AliBee1 profile image
AliBee1

Dear Paula

If you are in the UK there has been a rotten virus going round with a cough and often a sore throat. I had it for 4 weeks and it exhausted me so if your husband has it, as well as CBD, it will wear him out completely. My husband had CBD and having anything else wrong with him exhausted him. He too ended up in his wheelchair most of the time. The good thing in your husband's case is that you say that he is still coughing up a lot of clear, thick mucous and that his swallowing is ok. My husband's swallowing became very poor and he could not cough up anything properly. He also moaned and groaned a lot so he acquired the nickname 'Groany Bear' in a nice way. He said it was easier than talking, which he could not do well unless he was angry and then this perfectly normal voice would come from somewhere for a short while. Do you have input from Speech and Language?

My husband also had great difficulty with sleep at night but could sleep deeply during the day. I gave up trying to have a day and night and ended up sort of fitting round his weird time schedule.

Your doctor sounds ok though as she sent him for an xray quickly. Maybe another visit to her to listen to his lungs might be in order just to check out that he does not have an infection as well as the virus.

I am sorry that I cannot be of much more help. Big hug and good luck. AliBee xx

SewBears profile image
SewBears

When hubby gets sick with coughing and sneezing it seems like all of his other issues magnify. So far we’ve been fortunate that he has always bounced back. When he’s feeling congested I let him sleep and rest, watch TV. I don’t worry if he doesn’t get his exercise in because I know that his body is trying to recover and it takes a lot of rest for that to happen. I wouldn’t jump to conclusions that your husband is declining. Hopefully it’s a bug that he will be strong enough to fight.

One day at a time.

❤️ I SewBears

Dadshelper profile image
Dadshelper

That sound a lot like Dad's progression. For Dad things went down more like stairs then a gradual line. Sometimes he'd decline almost overnight. You can try a cool mist vaporizer near him at night and if possible elevate his head while sleeping to help with the coughing and phlegm buildup. Talk to his doctor about a cough medicine to help with the phlegm buildup.

Ron

Are they or aren’t they declining is always a question. Decline is inevitable with these diseases. Is this the big one? Hard to know. All you can do is wait and see. Hope for the best. He may plateau and stay there for some time.

Hi Quarter!

These are our experiences about cough,phlegm and choking hoping are useful to you:

•Prevent colds and flu to avoid eventual common pneumonia (pneumococcal). Vaccination for flu and pneumonia could be advisable.

•Persistent cough. Use the syrup recommended by the physician. To avoid in the diet: coffee, carbonated beverages as pop or soda (or eliminate the gas by agitation before giving it to the patient) as well as chocolate, avoiding also orange, lemon or grapefruit juice, helps.

In acute attacks of cough taking some yogurt can help.

“easterncedar” chat contributor indicates that: “The medicine in most cough syrups conflicts with the anti anxiety medication. I switched to a pine and propolis syrup (ProtectSapin) from the health food store that seemed to help a bit.”

•Phlegm and choking: The first thing is to remain calm during episodes of truly shocking coughs. The second is that a physician rules out an infection in the respiratory tract. Get a pulse oximeter to control. (Fever is an indication usually either pneumonia or urinay tract infection (UTI) in PSP patients).

•It is not a big problem that the patient swallows his phlegm. For phlegm to be fluid, it is important to drink liquids. Ten minutes steam inhalation from boiling water in a bowl with a few drops of some floral essence (avoid mint plants and eucalyptus) that is pleasant to the patient, a small spoonful of marine salt and some pieces of lemon, with a towel covering head and bowl helps. (One to three times a day (*)) Medications like "Mucosan" (Ambroxol hydrochloride) twice a day or “Fluimicil Forte-600” (Acetilcisteine) one by day, help. Ask physician.

(*) We have observed that a steam inhalation session immediately before dinner can reduce appetite. We are trying to give her dinner "before" the "steam inhalation" and, for now, the results are better.

•In case of choking, raise both arms at shoulder height, breathe only through the nose intensely if posible. I not, inhale air intensely but not very fast through the mouth. Retain air a couple of seconds and then force the cough.

•Also here, to avoid in the diet drinks that can be irritating helps: coffee, carbonated beverages as pop or soda (or eliminate the gas by agitation before giving it to the patient), chocolate, orange or grapefruit juice, etc..

Note.- It has been described that: pineapple juice breaks down the protein very well and fluidifies the mucus (phlegms). It will have to be tested if the patient tolerates pineapple juice without coughing or choking. (Red1990 indicates that: the pineapple juice enzyme complex is available as a supplement called Bromelain. For people taking anticoagulants, bromelain and melatonin have the same risks of gastrointestinal bleeding as aspirin).

There are some foods to avoid…. things like grapes, rice, couscous, lentils, peas etc anything small was problematic as were spicy foods. Foods that crumble easily, cookies, crackers, stringy foods, sticky foods, etc.

•There is a suction machine which helped a lot with the very sticky phlegm. We have NOT used it yet.

•A steam atomizer to keep the air in the room moist helped, too. (40% - 52% moist advisable.)

•The physiotherapists have exercises reinforcing trunk muscles to improve the cough response to choking. Engage a good speech/swallow therapist to learn swallowing techniques.

•Avoid dairy products, especially before bedtime, this seems to prevent the increase in phlegm viscosity.

•Raising around 15º a 35º (9” to 12”) the head of the bed also helps.

Hug and luck.

Luis

Quarter profile image
Quarter in reply to LuisRodicioRodicio

Thank you so much..

Mtorres9235 profile image
Mtorres9235 in reply to LuisRodicioRodicio

Wow. Really helpful info. Thanks for your time and helpfulness

Railfan profile image
Railfan

I am currently hanging on to a virus also causing a cough with mostly clear phlegm when it is productive. I am a Vet and always get my flu shot annually and pneumonia shot when its due. The strain that I and my wife ended up with wasn't the one vaccinated for. The variant didn't even show up on the flu test they did. I've been over the fevers for almost 2 weeks but the cough lingers. It wears myself and my wife out. She is my caregiver and got the bug from me a little more than a week after I did. I ended up caring for her to the best of my abilities. We live in a very close knit and caring retirement community. Neighbors went shopping for us for things we ran out of.

Quarter profile image
Quarter in reply to Railfan

Yes, whatever it is that is going around has a long lingering cough, I've been told. My husband also had the flu shot through the VA, he is a Navy veteran. It sounds like you live in a very nice place with good neighbors. I hope you and your wife get to feeling better soon.

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