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29th November 2016 at 11:33 am #7442
Any rapid changes are not usually due to MSA. MSA changes over months and years, anything that makes symptoms worse over a few days will either be a change in medication that didn’t suit, or there is likely to be an infection present. The most obvious places for an infection are urine or chest. It is important to get the GP to check for infection as antibiotics will be required.
Most people with MSA don’t show the obvious signs of infection- due to the autonomic dysfunction, someone may not have a high temperature or other common signs. Usually the partner/carer notices that the person with MSA is not their usual self; they may be more sleepy, confused, or irritable.
There will be good and bad days, but I wouldn’t expect confusion to be present in MSA unless it is caused by an infection.
Stress can also make symptoms worse.
Samantha, MSAT NS.30th November 2016 at 5:41 pm #7453
Thank you. Since last post Mark has been taken back in ( one week since last time) with yet again pneumonia. Each time they send him out they say the infection has cleared up. We have given them the contact details for yourselves as yet again went through msa being Parkinson’s blaa blaa blaa. Have now got a CPAP machine which is helping and a voice amplifier to help also waiting for his hearing aid fitting. I keep taking the Micky out of Mark calling him my very own bionic man. Thanks for all your help wishing you all the best xx1st December 2016 at 1:52 pm #7465
Maybe something for your bionic man. BUDESONIDE is for getting lungs at ease and avoiding infections. I use it each day in DAMP or MIST form. I have a Little machine to make the mist from the fluid. Connect to the bipap to breath it deep into the lungs, for maximal effect. Ask around if your mark could benefit from this. If you need more details let me know.
I hope the storm will change to a southerly breeze
\1st December 2016 at 2:25 pm #7466
Thank you Leo you are a very knowledgeable man, I will ask the consultant when I go into see him, we are hoping he will be allowed home tomorrow, we are then waiting for the ct scan to find out what this said activity is in the base of the right lung.Thank you again take care enjoy the good days and smile and laugh through the bad. Debbie an Mark5th December 2016 at 5:49 pm #7502
There is nothing in this country equivalent to the system in he Netherlands but it is possible to arrange for a “do not resusitate” in the case of cardiac arrest. It is also possible to get a statement that the patient is not to be admitted to hospital at any cost.
Pneumonia is often the result of poor swallowing.with food being inhaled. The speech therapist can test the patients swallow and advise about the best food and the way to eat. Counterintuitively liquid may be more difficult to swallow than semi solids.
Copy and frame and put on your wall Leos advice about falls. Do everything you can to avoid them
Freda5th December 2016 at 6:11 pm #7503
Hi Freda thank you for your reply. Mark already has a do not resuscitate in his care plan and we always tell the hospital,doctors about it. Had to go to hospital to sort out Marks medication as they started to mess it about not giving it all to him not at right time ect they are saying as you said that it is caused by his swallowing they have taken him down for xray why swallowing to make a 100% sure. Also they have found out that the chest pain was caused by a blood clot on the right lung but why checking that they have found a few other nasties in the lung. We are getting fed up with the way the cards are being dealt at the moment but we stand tall together and will sort out all that is thrown our way. Take care xx8th January 2017 at 10:59 pm #7907
I did start to reply to this before Christmas but the machine ate it and I was going away and did not have time to do it again
Medication in hospital is a huge problem. Pd the Parkinsons support body have done a brilliant job with their campaign called “on time every time” I and found that if you said this to the hospital people they had heard of it.
The problem is that MSA patients often have very precise timings to get the best out of their meds. Hospitals have breakfast, lunch tea and supper which won’t do. When Victor was in a very caring hospital after a fall I used to go in and feed him his evening meal. I used to bring it little ultra high calorie treats ;like strawberries in syrup with double cream to try to get some extra calories into him. Unless he had been given his sinemet at least half an hour before I arived he could not swallow and took too long to recover so it was time for me to go and he missed a meal. I could see when I walked into the ward if he had not had his meds but was told that it was only 30 minutes late….
I prared a chart showing how his med level dropped when his meds were late and did not recover until after the next one was due and set off for a friendly chat with th powers that be. When they had understood what I was saying I suggested that the times should be changed on the yellow sheet. 5 pm was altered to 5.07, 11 30 to 11 39. for example. It was such an odd number that any new staff queried it and things got a lot better
one thing that led to near disaster was morning ward rounds. a Consultant does his ward rounds changing meds where necessary, and writing it on the yellow forms after which they all are sent down to the pharmacy together. Since next medication round was at lunch time they all came back in time for lunch. NOT SOON ENOUGH for the 11.39 dose. For obvious reasons if there is no form on the ward no one is allowed to give medication until it comes.
When it was explained to me I asked someone to contact the pharmacy to sort it out. Sorry that is not possible. “Thats ok I shall go and have a word with them” I was given the impression that I might never been seen alive again…….But I was of course. Pharmacist completely understood. and gave instructions that someone was to bring the prescription down sepaerately and wait while it was dispensed on the spot.
You need systems – most of them are there to prevent accidents – but they are servants not masters and sometimes it takes a cheerful smiling outsider to sort it especially one who has already established herself as a non-threatening well informed member of the team.
Freda9th January 2017 at 7:17 am #7908
Hello thank you Freda for taking the time to answer.You will have to excuse any spelling mistakes ect as Debbie (who normally writes )usually does this is not very well at moment.I found that the staff tried to ignore things that I tried to explain to them because they did not have the patience or time to Liston to me as I talk very slow(like my typing) an quiet and would often tell me they were busy an would come back to me but most times didn’t which meant I would get upset ring Deb and ask her to sort it. Has anyone found that people ignore the partners,carers etc when they go to Hosp,doctors,etc Deb last time I was admitted was told by a junior doctor to be quiet as I was in the room bear in mind I was confused had pneumonia had not had my tablets when she said that I was confused he said we will see and started a battery of questions to see if I could answer them I couldn’t even remember my address etc. This upsets myself and I know Deb as she says she feels stupid useless and as if she doesn’t know anything about what is going on with myself. She no more than most doctors. This is not the first time this has happened Deb has been by my side through all this hell and others health problems she nows me better than myself sometimes she is like a walking text book on me So why don’t people Liston to her does she have to have a degree like them to be listened too9th January 2017 at 8:11 am #7909
Sorry pressed the wrong button and sent before I could stop it. To cut a long story short she walked out of the cubicle after the so called doctor said” you should stop wiping his(me) backside and talk to him like a human being” if this what our so called doctors treat our carers like no wonder we are in trouble. It has upset both of us and Debs is really down because of it. Hope you are all having a better new year.11th January 2017 at 12:08 am #7921
Poor Deb, poor you
Typing is of no importance- perfectly clear what you are saying and it will be ringing a bell with so many people.
We are none of us taught how to deal with these situations and have to learn by trial and error.
Here are some things which I learned by myself.. they may not suit you but I found they helped
Start from basic principles
You and Deb almost certainly know more about MSA than most of the medical people you come into contact with and certainly more about day to day living with YOUR MSA.
You will be dealing with people who hate not knowing more than their patients..they regard it as failure.. after all it is their job to know more. Depending on their temperament this gets worse the higher up you go
You will be dealing with people most of whom went into medicine at whatever level wanting to help people and make things better for them but many of them will be over stressed, overworked, burned out or just in the wrong job. They will be trying to defend themselves and need your help and understanding (even if you think you would rather wring someones neck)
You the patient and you the carer are the most important people in the universe. Without the patients some of these high and mighty people would be out of a job and without the carers the whole system would collapse. You NEVER say this but you know it and use the fact to build up your confidence .
Be proactive.Try to establish your self as a friendly knowledgeable unthreatening person only too happy to share your special knowledge with all the lovely people who are part of the team looking after YOUR patient. It is much easier to say what you want to say first. I used to walk confidently into a new situation, smiling and friendly saying that I was sorry to bring them a patient with a such a rare disease that most GPs only ever saw one case in a whole lifetimes practise. I would then take it for granted in the nicest possible way that they would welcome my input and give them information about the professional help available from MSAT
This is not easy and it may at times stick in your gullet but most people will feel good about helping and respond to a smile and a bit of praise. Imagine how their hearts must sink when someone comes to visit every day full of accusations. OGNHA….short for Oh God not him again
I found it useful to complain by saying “I have a problem, can you help me?” Then explain why medication has to be on time, say that it is not happening and what can WE do to get it right. Much more positive than “you have got it wrong again”
If you dont have much medical expertise don’t try to use the technical words and let someone improve their limited self esteem by despising you. You know what you mean and as far as YOUR patient is concerned you are right.If you want to explain in simple words they can understand you.
If you don’t have much knowledge read the relevant stuff on the trusts website and remember our lovely nurses who DO know what they are talking about
All very easy to say but sometimes very hard to do but if you can get the staff to accept you it will help on the inevitable future admissions.
Time I shut up and went to bed.
Freda11th January 2017 at 7:45 am #7922
Hello me again. Thank you Freda for your post. Deb is someone who would rather work with others than against,she will take in what others say and do and if she feels that it won’t help ett will say do you think it may help/make it easier if perhaps we do it this way. She does not like confrontation and would rather sit in a corner and watch the world go by. But saying that she will stand by my side through thick and thin and will always get the best for me forgetting herself she goes out of her way to get information,numbers,names etc to help people understand my condition’s but some people won’t accept that perhaps they may not no everything. But I agree with everything you say a smile and friendly approach gets you a long way. I hope that all you wonderful people who love an care for your loved ones remember that you must look after yourselves,take time out even if its just like Deb taking the dogs out because you are important as well. xx11th January 2017 at 9:08 am #7923
You are so right. Carers are sometimes inclined to seriously neglect them selves until they are sucked dry. They are so important and everyone who has contact with them understands their value.
I can say this because I am no longer a carer since my husband died over two years ago but like other former carers I still support the MSA Trust doing things like running a Support Group and spreading knowledge of the disease. It has become better known over the last ten years and that is good.
I was posting on the Forum when Leo joined and found it an enormous help to be able to talk to people who did not need long explanations about MSA and to share ideas with them. people outside MSA were very kind but I did find it hard to hear them saying things like “I expect they will find a cure soon”………..not as comforting as they thought it was.
Take care of yourselves and give The Beast a good run for its money
Freda11th January 2017 at 10:46 am #7925
I will give it a good run for its money we have never given in to anything cancer didn’t beat us an this will have to throw a lot at us to beat me. You have made Deb laugh she says we better get our friend to put boosters on my scooter and chair as if I had to run she would have to pick me up and give me a piggy back she must be getting better being rude to me. Told her I will sack her and find someone else to look after me for some reason she can’t stop laughing I wonder why? Thank you all and smile laugh and enjoy everything.2nd May 2018 at 12:57 pm #11197
very nice post i like it.13th December 2018 at 4:46 pm #14057
Just want to update.
Husband is now using a cane but he really needs a walker. Male pride. I do not blame him.
His walking is more like a very slow shuffle. I purchased hiking shoes that are waterproof, but he feels like he is going to fall. So back they will go.
Speech is quite bad. Can hardly understand him. One word sentences.
He has to go for swallowing test.
We had chair lifts put into our home.
A year ago he was able to make Christmas dinner. This year that just can not happen.
His does on sediment is quite high. He has some side effects so they will not increase it. That ok because it is not doing much for him.
Me, I am frustrated. If this has to happen, let him be comfortable. We need more research like cancer gets!
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