I am gradually being driven totally bonkers by Ian‘s continual cough cough cough, grunting moaning or two absolutely no avail. It is actually driving me mad so I have locked myself in the bedroom so I can’t hear him here because nothing happens.
He insists he’s got a tickle or something in his throat but after about two months I rather suspect he should’ve coughed it up by now. I feel very mean but I just can’t listen to this racket anymore!
Oh that will be really difficut for you and I'm guessing probably for Ian too. Your not mean, your totally frustrated, which is very understandable.
Two months is a long time to experience this, could a discussion with the GP happen to get some help to resolve it? Unless you've already spoken to the GP? I'm not sure if this is directly msa related as Paul didn't experience this symptom (although he did have a nervous tic at one stage due to waning confidence around his deteriorating health...) or if it's something else, but for your sanity you and Ian probably need to speak to someone pretty soon or further frustration will build.
I really hope you get some support as it's another thing that's clearly difficult to manage, and I know as a carer and an msa sufferer there's already so much to deal with. At least with Christmas finished support services will hopefully be a little easier to access for you both.
Thàt wouĺď drive añyone nuts. Would it help d'ya thiñk if you cld get the GP or a Nurse Pràctioner out from the surgèŕy to have a look at him.Sòrry I've just scrolled down and reàd that Nikñak hàs aĺreaďy asked thàt. Hope it gets resolved soon for both your sakes.
Sue
PS sorry about the typos gòt bad shakes today xx
HiCoughs can definitely be draining.....
I've found with my Sue that her cough is the start of a chest infection as she doesn't show any other symptoms such as raised temperature...
Definitely get your GP involved to rule anything out. It could then just be part of his symptoms......then earplugs 😂😂 and some help for you ?
Paul
I think it is linked to loss of voice and swallowing, and for my husband it seems to worsen at certain times of the day. Is your husband seeing a speech therapist? The exercises seem to help - but they are also difficult to listen to! Sadly, yet another symptom of this horrible condition, and it highlights the fact that conversation is reduced, and the only communication is a cough.
Hello, my dad has been doing what you describe. The cough bit has been due to phlegm pooling at back of the throat, as his chest is clear. He has just been given a little hyoceine patch behind his ear to dry it up. (Alternative: nacsys effervescent tablets). I was really worried about side effects but so far so good. Speech therapy has been helpful with the throat clearing and has advised about different thicknesses to feed him. Apparently people can still perceive a residue after eating or drinking. The wordless vocalising part is relatively new - I guess it's associated?. Very interested to see what others say about that because I wonder if it's also associated with a cognitive decline, or something automatic. Ie: if he knows he's even doing it. Or if he sometimes thinks he's talking.
I feel you with the frustration in general. I just discovered late last night that if you google 'binaural beats', YouTube has some posts of up to 10 hours of white noise you can play to yourself on your phone. 😅 Xx
Cool, thank you
Thanks to everyone who has replied to this coughing problem. I shall certainly get back to the speech therapist and see if she can do anything about it or suggest what we can do. Interestingly enough there is no coughing at all at night. He did have a hyoscine patch 18 months ago but it didn’t agree with him and he Began hallucinating and being very unusual. This was whilst he was having a weeks respite in the local hospice. I now say he is allergic to hyoscine.
We have been having the same coughing problem and were diagnosed Carbocisteine which has helped a lot in reducing phlegm which P seemed unable to cough out.
We have the same! Coughing, choking it’s really hard. I’m going to read through all the replies too x
Sorry to hear this, we are going through something similar.
L sits and coughs and I don't seem to have any answers,
I purchased an orthopaedic chair to improve her posture, she has tissues next to her and access to a bowl when she feels sickly. The thing is the coughs happen for no apparent reason and there seems to be nothing to clear in the throat.
We saw a speech therapist and they had her eating biscuits and came to the conclusion there was not a severe problem.
All the medical people we see are lovely it's just that with the current Covid crisis we don't see them very much. We had a phone conversation nearly a year ago with the consultant and that's about it.
I feel we are on our own, L coughs in bed as well, we don't always get a good nights sleep and it just makes you more tired with everything so I can understand what it's like for you.
You're doing a great job with Ian I'm sure and there's not a lot of time for you and your needs I bet . We just do the best we can, when we can, but unfortunately all sufferers are on a different journey so we (carers) can't help each other as much as we would like to.
L has lost all mobility now and I have to manhandle her a lot, perhaps a but of physio may help, I don't know. she stares a lot at me now and I have no idea how to combat that.
So keep going and smiling if you can, you're not being mean, some days I'm driven bonkers like you and I'm sure others are as well so you're not alone.
Regards
Derek
Hi. We had some cough related issues and at night it is very difficult to deal with because whilst you don't want to hear it, you have a niggle at the back of your mind that there may be something wrong! The joys of caring!Geoff had carbocisteine (mucodyne) to help keep any secretions thin enough to clear or swallow, and we also eventually used a saline nebuliser and a cough assist machine to help. I don't think that cough assist machines are very readily available in the community but we were fortunate. There were nights that we were using it in the middle of the night to help settle him.
Speak with the professionals that have already been suggested and with the MSA Nurse as well for hints and tricks to help you. and the white noise and caring for yourself are really good suggestions!!
Diane
My coughing happens more at night, My head is elevated. I turn side to side, I am worse on my back.Frequent sips helps.
My sister does special lung clearing exercise that singers use to clear their lungs. With asdist. I went to pulmonologist. I might get on vough assist. Usually through a trilogy or some type of ventilator cpap like machine. Gives breaths, expands lungs. Sometimes suctioning secretions out of mouth or even in nose helps. A pulmonologist will help you navigate this. I think that the secretions have to be removed otherwise they go into lungs. I think it is called aspiration. I would hate to think that the gurgling is coming from lungs and that he is slowly suffocating from pnuemonia. I have a pulse oximeter. My son checkes my oxygen level and heart rate with it. It us a good tool.
My son makes sure that I gargle several times. I get chest physiotherapy, CPT to help loise thick secretions to help me cough them out. I watched a lot of YouTube videos.
My son says to check out how people with cystic fibrosis deals with secretions.
I know movement and turning helps.
Getting extra in home help for respiratory procedures is good.
Postural draiange helps before bed. Laying me on my belly on pillows, we don't have a wedge, head lower than waist. Helps to drain secretions.
I am sorry that you have to listen to the gurgling.
We play nature sounds.
Putting me on my side with mouth tilted for secretions to drain on washcloth help. I tend to drool
I hope that I helped
Peace
The thing is, he probably has. Saliva and swallowing is different. Has he been seen by speech and language for an assessment? It might be worth a chat with the GP or your parkinson team. Xx
Understanding potential diagnosis
recent hospitalization
Since when does MSA have a silent A in its title?
In need of some support
Nnot a good daybadly let down...
