Pneumonia in CBD

[Chelle1981uk]

Hi I’ve just found out my mum is in hospital with pneumonia and I’m on holiday in Australia - I’m looking for flights and trying to get home asap. Has anyone had experience of getting this when you already have CBD or has anyone had a loved one who has had pneumonia before? I know it’s not a great thing to have when people with CBD get pneumonia so I’m basically asking for your views on this and what happened with you/your loved one? Thank you in advance x

[honjen43]

Hi Chelle1981uk I am sorry you are so far from home while this is happening to your mum. You need your Me-time! I hope you manage to arrange a flight home. My hubby was diagnosed with CBD in 2016. He suddenly developed pneumonia. It was treated with antibiotics and he recovered from this bout.I don't know what caused his, but it was during a period when his immunity was down and a reduction in motor and other functions was also happening quickly. I think this may have been affected by the CBD which can result in autonomic functions such as body temp, blood pressure, etc to alter. He did experience some of this a month or 2 before the pneumonia.

Another cause of pneumonia is a choking episode when the swallow mechanism is failing. Your mum may not have reached this point yet, but maybe if that is a likely cause, ask for a SALT test, a test that checks out the mechanism once she has been successfully treated. There are exercises to improve this mechanism.

Thinking of you!

Hugs

Jen xxx

[Chelle1981uk in reply to honjen43]

HI Jen, thanks so much for your reply. So sorry to hear your husband also had pneumonia but so pleased he recovered - I’m aware that getting the latter when someone has CBD can be fatal so I’m just really worried for mum right now. She went into hospital with bowel trouble then they diagnosed her with pneumonia but her breathing was fine etc but then apparently she did choke a little when eating in the hospital yet when she is home with dad and I she’s been fine with eating. I just want updates like now and the time difference is killing me! Thank you again for your kind words; let’s just hope my mum gets through this x

[Kelmisty]

Try not to panic, you are doing your best and you are allowed a holiday.

But as a daughter of a PSP & CBD warrior I know your pain. Xx

[Chelle1981uk in reply to Kelmisty]

Thanks Kelmisty - just hard being so far away from her. Waiting for an update today x

[easterncedar]

It may not be useful to say, so please excuse my speaking up here, but I wonder if there’s really any reason for you to curtail your vacation. I’m sure you need it, right? So you might consider: Is your mother getting good care? Pneumonia most often is treated successfully with antibiotics, so it may pass quickly. If the infection is resistant, then of course you might weigh, for your own peace of mind and for your family too, whether you need to be there. As a practical matter, you may not be able to change the outcome, but you will need to be able to live with the story you tell. If she recovers easily and you have lost your vacation, how will the story go? I navigated a few similar emergencies, although not exactly yours, and for me the wait and see was the best. I do sympathize. Please do let us know how you go. Hugs. Ec

[Chelle1981uk in reply to easterncedar]

Hi thank you for your reply. You’re not the only one to say that - do I need to cut my holiday short, but unless my mum responds to the antibiotics then I will have to come home. I couldn’t live with myself if I didn’t get home earlier - even if she did get better I’d still be glad I saw her instead of waiting another long week. Hoping the update today will be a positive one and then maybe I can wait until my original return date. Thank you again - it’s just so hard being away from her at a time like this

[LuisRodicioRodicio]

Hi Chelle1981uk!

honjen43, Kelmisty, and easterncedar gave you excellent suggestions. Perhaps our experiences and informations could be also useful:

A serious fall with serious consequences (hospitalization, surgical intervention, strong medication, etc.) as well as a serious illness (pneumonia, severe flu, etc.) are typical situations that can trigger a fatal process. It is not uncommon for the PSP patient to overcome these types of situations - but these situations once overcome are often accompanied by some increase in the PSP symptoms and a decrease in the quality of life.

Prevent colds, common pneumonia (pneumococcal) and flu to avoid eventual infections. Vaccination for flu and pneumonia could be advisable. In our case we apply the vaccine against pneumonia and annually against the flu without problems.

On February 2021 and in our case, there appear to be no contraindications to applying the COVID19 vaccines.

Prevent solids or regular liquids from reaching the lungs to avoid eventual “aspiration pneumonia,” (Besides falls, this is another very important risk.)

• Add thickeners (eg, Resource from Nestle, Thick-it, Simply Thick-Easy Mix, CVs,etc.) to drinks (soups, water, Aquarius (*) orange or lemon or similar without gas, etc.) till obtain a sufficient glutinous liquid. To drink, it is advisable to use a special cup (Ornamin 815) with the chin as near as possible to the chest. Some mango and peach juices have an adequate consistency.

(*) Isotonic drinks are interesting to help maintain blood electrolytes at the correct level.

• The food must be moderately doughy and in small pieces, around ½”-3/4” if solid.

• The speech therapist has insisted that she should not take meals that "deceive" the mechanism of swallowing that is damaged. The foods that “deceive” are those that have liquids and solids in the same bite (eg, some beans with soup or a soup with pasta).

• Check the patient is sitting fully upright to eat and try not to have distractions around while he is eating.

hug and luck.

Luis

[Chelle1981uk in reply to LuisRodicioRodicio]

Hi LuisRodicioRodicio! Thank you for your reply! I’ve called the hospital tonight and thankfully my mum seems to be getting better - she is no longer on oxygen and she is doing well. Now we just have to get her home and back into her routine! Your reply was very helpful, I will pass your comments to my dad too. Take care x

[easterncedar]

Hey, Chelle, just checking in. How is your mother? I do hope you have had better news. Take care. Ec

[Chelle1981uk in reply to easterncedar]

Hi! Thank you for your message - I’ve not long been off the phone to the hospital and actually spoke to the doctor! He was very helpful and said mum was okay in herself, she isn’t on oxygen anymore and the pneumonia is improving. They thought mum was bedbound so I had to reiterate that she wasn’t and that my dad and I, prior to the hospital stay, had mum out and about most days - the doctor seemed surprised at this! I had a really good chat with him and now I’m just waiting an hour until my dad gets to the hospital so that I can video call him and see my mum for myself! The doctor said she wasn’t talking much but I did say she can say “yes, no, okay” so I’m hoping he’s going to try and get her to try and talk again - she couldn’t last night when I called but I think with her being tired etc it may be affecting her - just hope today she will be feeling better. Thank you again for checking in; you’re so kind x