My husband was diagnosed with Parkinson’s in 2021 after a few years of dizziness and balance problems , over the 2 years since diagnosis things have changed dramatically, he went from balance issues and stooping to using a stick, he was seen by a urologist for wee retention and was given catheters to self catheterise, things seemed ok then the fainting started and the need for a walker, very weak legs , speech slurring and quiet, moving to 2023 April unable to get out of bed to catheterise due to fainting had a few falls due to this so I was doing the catheters for him in the bedroom , still fainting , we saw the neurologist and she was concerned about the decline and the Bp and speech , I asked what she thought and she said Possibly MSA and had I thought about a care home (of course I haven’t ) I said what are you saying and she said 6 months to 2 years ??? What does she mean ? She referred us to urology for a supra Pubic catheter, August 2023 catheter fitted, hospitalised due to fainting turned into fits, now Les is home but having carers 4 times a day, he can’t stand on his own or walk anymore , his can’t cut his food up any more and has virtually lost the use of his left arm which locks and causes pain, he is now in in a hospital bed downstairs and seems to have lost a lot of weight , he seems flemy all the time but can’t cough anymore , I’m sorry this is long but I haven’t got a clue what’s going on , people talk about palliative care how does anyone know when this needs to be spoken about , there are many other symptoms but too many to put here right now as it’s my first post, does it sound like my husband is progressing fast? I feel so overwhelmed, also his breathing at night is terrible is this normal ?
any advice would be great please
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DeeMilo25
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Oh Dee how difficult for you. I think you know the answers ti your questions you just want the answers ti be different. Take care of yourself and get as much help and support that you can. Palliative care can be very helpful regardless of the stage so I would suggest that you seek help from them too. No one will tell you how long you have as everyone is different but I think that you know that things are going in the wrong direction so make the best of your time together. Lots of love
I’m so sorry to read this. Can you speak to your GP about a referral to your local hospice? They are amazing places to support you and your husband, I know it’s a scary time but having a plan helps you to be able to enjoy the good times and have the support for when it’s not so good. It does sound like it’s time to ask for that help.
thank you everyone for your replies, I don’t know where to start with palliative care and maybe I am in denial about the progression of Les’s condition,
We found our local hospice as a good place to start, for the support they are able to give you both, they can help to co- ordinate alongside your GP. Because MSA is so rare, co-ordinating care is overwhelming. Just make one call and ask for help, it’s ok. Don’t worry about everything all at once, sometimes just asking for help is a good first step.
Thank you I’ll look into it, I feel like a fraud though and I feel like I’m burying him already 😩 am I jumping the gun maybe he’s not as bad as I think maybe he’s not dying ? 😩
I always thought of palliative care about living better - if that helps? Once I had a plan for mum, it just took away some of the worry and uncertainty . Sadly this disease brings something called ‘anticipatory grief’, the hospice was able to help me with that, I also found shouting a bit at those who should be helping and co-ordinating care helped a bit too.
Dee I’m really sorry you have to be here. You can self-refer to palliative care. They’re wonderful. Just find your most local hospice. Sending love xxx
So your story and progression could have been written by me!
Are you in Uk?
Because the suggest palliative care it doesn’t mean what we think. It’s just more support. Speak to your neurologist and get referral to your local hospice, this provides counselling further support, all manner of things actually. I use their services for respite sits to allow me to go out and not worry.
The breathing, get a referral for a cough assist machine. Invaluable and takes all that gurgling away.
Jon also cannot walk. We have ceiling joists in place. He is on a soft diet and has lost tons of weight. Get a referral to a dietitian for protein supplements.
Also get a referral to Salt to assess swallow. This will help with the breathing.
Is Les speaking? If so, voice bank now. MSA Trust will help you here.
it has effected Jon’s dominant right side and he has little use of it. He cannot do anything for himself. His speech is limited but we now use a voice aid with the voice bank.
keep him hydrated. Give yourself time. Get on to those I’ve listed. Also your Parkinson’s nurse and occupational therapist.
You need them all now so they all work together and follow a plan.
It frustrates me that no one has the answers , Les doesn’t even know that his condition is terminal , he talks about holiday next year 😩 I know this won’t happen and I don’t even know if he will still be with me, I have asked to Parkinson’s nurse if someone can explain this condition to Les as I can’t do it, I can’t tell my husband he is dying , surely this is their job 🤷🏻♀️
How do you go away , I can’t move him in my own without a Sara steady and even then I struggle , I have 2 carers 4 times a day and I can’t get him out of the house .
Hi - your story very familiar. My husband TC was diagnosed Parkinsons 2019 and MSA in August 22. Diagnosis was because of his extremely rapid deterioration. He's been bedbound since Oct 22. We now have cough assist and he wears mask at night as his CO2 gets too high without. He had gastrostomy tube fitted March 23 and is now nil by mouth. He also has computer from speech therapy which allows him to write phrases and control the tv. He's now sleeping a lot and is having multiple urine and chest infections. I think we're approaching final stage. The hospice nurse has been invaluable re his medication. She also has direct access to GP which has been great. I don't know if this has been helpful but just know there are others going through the same and great experience on this forum - take care
Thank you for your reply , I’m sorry to hear about your husband, I don’t think we’re quite as far advanced as not needing feeding tube yet and seems ok eating , I haven’t spoken to anyone about noisy breathing at night yet , maybe when we see Parkinson nurse I’ll speak to her about it x
hi Dee, Thank you for your post. My husband has MSA and we are at the same stage as you however I could not have expressed myself as clearly as you have ! The Occupational Therapists are very helpful assessing his needs for equipment to move him from bed to chair. I am having a hoist installed soon. Everday I try to keep very positive and be grateful that my lovely husband is still here. His speech is slurred now but he is practicing his Me My Mo Moo’s . He has a great sense of humour, encouraged by a great team of grandchildren! I haven’t got careers because his special needs will not fit into their timed schedule. I manage at the moment with the help of my daughter who lives close. I haven’t contacted the MSA Trust yet but I am constantly checking for advice on their website. Good luck xx
He was diagnosed with MSA November 2021. He can’t move nor pick anything up. He can’t feed himself but can eat and enjoy his food. He is making coughing noises during the night and his breathing is erratic. I am speaking to the Parkinson nurse tomorrow to see what can be done about this. x
No I haven’t because I can manage if I get the right equipment to help me move him. I don’t know anything about palliative care although the Parkinson nurse has suggested I contact MSA Trust for information. She said they are very helpful and will do home visits. My husband has not been good the last few days but I put that down to the hot weather we are having. xx
Thank you xx Les seems worse too the last few days , he’s struggling with his hands, he normally has trouble with his left hand but today his right seems bad too and he seems to be breathing quite shallow today , short breaths and a lot of dramatic sighing , not eating his dinners at the moment but still wants dinner just during eat it, seems to eat his pudding better though so I’m happy to give him pudding as at least he’s eating xxx
As others have said, contact the MSA Trust. You can register with them and they'll give you a wealth of information. As for palliative care, he's already receiving it. It's about providing qualified life for those with a terminal illness, so please don't get too caught up with the term. Yes planning is good, although very difficult with MSA I know.Xx
Hospices are free and you can self refer. They will help you to cope too. Each hospice is different. ring your local Hospice and explain your problem and theywill listen and advise you what you need and how to set about it. the Hospice and the MSA Trust are the two to have on your side when you are lost. Take help and advice when it is offered but above all remember "all msa patients are different, " It all depends on what you have in this Liquorish Allsorts of disease whether you can do things or not. There is no blame ,no "he can so you ought to" about it
thank you I’ve contacted the hospice and they have said to call them, I’ve spoken to the Parkinson’s nurse today and she said she will do the form , not sure what form she means but I’ll see xx
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Incontinence, where does this sit in the MSA route?
In need of some support
Since when does MSA have a silent A in its title?
recent hospitalization
