recent hospitalization

[Andrashko]

My husband gets a lot of mucus in his throat . Yesterday he began choking and although he was getting alot of the mucus coughed up, it just kept coming. He was having a very hard time breathing thru all this, so I call the ambulance, who took him to the hospital. After a few hours in the emergency room, and lots of blood work and urine testing, chest xray, there was absolutely nothing that was abnormal. Just in the last few weeks, he has gone from being able to walk a short distance with a walker and me beside him with a gait belt (although it is very slow, he was able to move his legs and bare weight on them). Now he is not able to stand at all and I find him leaning to the right when he is in bed. I am constantly propping him back up straight or putting wedge pillows to hold him up straight. His speech is very slurred and slow, but he does still have a voice. My problem as always is his sister who is the chiropractor and absolutely refuses to believe he has this disease, telling him the mucus is from allergies. She is telling him to get allergy testing, as she knows this is what is causing this. Does anyone have any experience with this, or can give me direction? I really need some advice. Thank you

[Hellebelle]

Hi Andrashko,

This is such a difficult condition to manage and it's hard to see the deterioration of your loved one. Your situation seems to have been made all the more difficult by a family member who sounds as if they are in denial.

What you have described with the mucus is very similar to what dad had. Because of the way MSA effects the muscles and mechanisms for swallowing, it is so difficult to expel or swallow secretions. Dad was given a drug ( sorry I can't remember the name, but I am sure others will) that helped with drying up mucus. There was also another drug he was given later that changed the consistency of the mucus to make it easier to swallow. Both helped to a certain extent.

I would get in touch with the MSA nurse through the MSA trust to get some advice.

If you need some equipment to assist with transfers and mobility now this has changed, an Occupational Therapist should be able to help.

Wishing you lots of strength in the days ahead.

Helen xx

[binnyrox]

Hi Andrashko

Sorry to hear about the situation - it must be so hard for you

I was recently warded for 10 days for aspirational pneumonia and thought I’d share the experience in case you find anything useful

1. The doctors found out I was drowning in my saliva and phlegm as my swallowing had deteriorated. They inserted a feed tube through my stomach and it was a game changer - I can now have full nutritional requirements without fear of choking

2. The speech therapist is now using this time to help strengthen my swallowing with exercises

3. I bought an inexpensive suction machine that my wife helps me suction out the excess secretions. That helps

4. I was given atropine eye drops to put under my tongue. It helps reduce the secretions. The eye drops is commonly used this way

My movement has also deteriorated but I am still pressing on with daily exercises. It does help slow the progression

Take care

[Andrashko in reply to binnyrox]

We were given a suction machine from hospice after John's hospital visit. He is able to cough most of it up, but he struggles daily with this. We haven't had to use the suction machine yet, but it will be good to have for his next episode, hopefully prevent another Emergency Room visit. The hospital did also prescribe those drops for secretions, but after checking with our neurologist, he said they most likely would complicate things by making more secretions as he described them as "ropy". I'm assuming that means to thicken them? As horrible as this disease is, I'm thankful to hear others suffer with this too. Makes me realize we aren't the only ones, so i stop blaming myself for causing anything. Thank you for your comments and advice

[binnyrox in reply to Andrashko]

I've just been taught to use a "Cough Assist" machine that I have rented.It been the best thing so far - it helps me expel secretions and in the process - strengthens my lungs whilst doing so. Unlike the suction machine that is passive

Taking some meds that thin the secretions also aid expelling with the cough assist

Just FYI

[Andrashko in reply to binnyrox]

thank you for your reply, I will need to do some research for the cough assistant, not sure I've heard about this

[StephWx]

Hi, my Nan also suffers with a lot of mucus sitting on her chest, she tries to cough it up but the majority of the time she isn’t able too. She has been prescribed a medicine called carbocisteine, it’s to help bring up phlegm which does help to an extent. Has you’re husband got a neurologist as they should be able to prescribe this as I’m sure that’s what they did with my Nan. It’s sad that you’re sister in law can’t accept his diagnosis as it’s such a horrible disease and you need as much support as possible. Sending love x

[Andrashko in reply to StephWx]

Thank you for your reply. It's hard enough dealing with this disease, but to be questioned that I may be causing this distress with the care I give is more than I can handle at times.

[incon1982]

This sounds so much like my husband! Last week I swear he coughed up phlegm/mucus almost one entire day. Scared us even though I knew this was something that would eventually happen. We have a terrific hospice nurse who came that day and calmed him and talked about diet and medication. So we are using Mucinex to help thin the secretions and that seems to help. But we are also thickening liquids, and eating soft foods to help. My hubby went from a little walking to totally bedridden in late May (he has no use of his arms, hands or legs - it was practically over night that he lost them). The one thing he has really been able to enjoy each day since then is great food - and now this is being taken from him as well. But I am at least trying to change it up each day a bit and use seasonings that will make things taste great but not irritate the throat.

This is a horrid disease and I can so identify with everything you described. I am sorry about your sister-in-law won't read up on MSA and understand what's going on. But YOU do and you are his best advocate, and I am sure he absolutely loves you for it.

[Andrashko in reply to incon1982]

My husband also went from walking with assistance to totally bed ridden, almost over night. Only after the hospital visit, and them culturing his urine, did we find out he had a urinary tract infection. After 3 days on antibiotics, we were able to get him up and he walked (although very shaky and not very stable), but walked none the less, a few feet into the shower. This was huge for us! So hard to know anything that is going on with their bodies, especially when there are no obvious reasons for the change. Thank you for your comment

[Annietutt]

Hello. My husband Tony lost a lot of mobility after he injured his knee and was unable to walk for a while. He has not regained that and the situation is now worse because of a cold which has laid him low and kept him in bed so I think he will lose more strength, particularly as he doesn’t even feel like doing his leg exercises. The cold is also affecting his breathing and eating so I can sympathise with what you are dealing with. It makes things even harder if you feel others are critical of the care you are giving (I also have some experience of this) - do you have other friends and family who reassure you and tell you what a fantastic job you are doing? I find most people are really in awe and appreciative of what we do to help our loved ones. Stay strong. You really are doing a great job.

[Andrashko in reply to Annietutt]

thank you for your kinds words. I know I am doing a good job, just makes you question yourself when things happen, or obviously when you get negativity especially from family.

[Bha1]

Hi . My mum is also experiencing the same. Her mucus is very thick and sits on her chest and in her mouth. She constantly crackles when she breathes. She keeps having scary episodes a couple of times a week where she starts coughing and choking on it but eventually brings up about a cup full of it. She’s hardly eating as it’s too difficult and it’s affected her speech further as her mouth is full of it. We are trying to get a suction machine which, although all medical specialists agree she needs urgently, no one seems to know where to source it from and we are going round the houses. She was also give medication for it but unfortunately it chose to loosen her bowels instead of the secretions which led to another issue!

[Andrashko]

thank you for your reply. Your poor mom, fix one end and complicate another! I know sometimes when my husband is coughing so much he has me check his pad to see if he pooped his pants (as he says), sometimes he does. Then we wonder if his control of his bowels will be next. I hope you find a suction device soon for your mom. Do you have a medical equipment company that could supply it? My husband is under hospice care, so they are a god send to us. Any equipment we need, we have it the next day.