The ride began on the 6th May !! On putting Richard to bed using the Ross Return I instinctively knew he wasn’t right . I rang our Gp first thing in the morning , a paramedic came out and took urine from his catheter bag . I wasn’t happy about that but didn’t challenge him . Richard was started on Antibiotics as a UTI was suspected . I continued to take his oxygen level , temp and bpm twice daily and recorded it . I also checked his blood pressure but not as often . His oxygen was very up and down and he had a good day , not so good then good etc . On Monday the Gp rang , to say the urine result showed resistance to the antibiotics but as he hadn't deteriorated he was not going to change them at that time . I wasn’t happy but again didn’t challenge . I rang the practise again in the afternoon for a chat but nothing changed . The next morning I rang again and a Paramedic came out . She was very good , she took urine from the catheter port which she said was ‘clean urine ‘ and changed the antibiotics . I pointed out Richards hand was swollen but she wasn’t concerned . I had her out again on the Thursday as nothing had changed . I reported all his OBS to her again and mentioned his hand . She decided to get him into Hospital as she said maybe we are all focusing on a UTI and it might be a chest infection . She said he would get a chest X-ray in Hospital . I fetched Richard home on Friday and when I had settled him I rang the surgery for the second urine result . I was told there was NO record of it anywhere !!! I was so cross as I was hoping this would confirm he was on the right antibiotics, and I could relax a bit . On Saturday I rang our Hospice to talk things through , the Nurse was able to access his records and told me although the urine sample wasn’t showing , they had done another one and that showed no significant growth . That was good but when I asked her to confirm a chest X-ray she said he hadn’t had one !! Again I was worried and on asking Richard he confirmed it . He also told me that he had been left in a chair for 3.5 hours , with no neck or head support , he asked 4 times for water , and when the staff helped him to dress they showed obvious anger because he couldn’t get his arm through his top . It broke my heart to know he had been treated like that . I continued to take OBS but 3 times a day and Saturday was a better day . On Sunday morning I stirred at 6am , I thought I’ll sit up check on him and settle back down . When I looked at him I thought oh shit he’s not right . I quickly did a set of OBS and asked how he felt . I showered and dressed ASAP and put a couple of things in the Hospital bag I keep ready . I also packed one for myself . I repeated OBS and rang 111 . The paramedics were quick to arrive and after reporting everything to them they wanted to take him in . I explained what had happened a few days days ago , and said I wasn’t happy for him to go without me . They said ok but we will have to go to A & E to get around me going . A&E was brilliant , we then were transferred into a side room on a ward . I stayed the night in a chair and Richard was given IV antibiotics and fluids . He now had a chest infection as well . In the morning the Dr changed the antibiotics and we were moved to a lovely en suite room , It was very quiet and private. On settling Richard I heard the Nurse ask where the antibiotic IV was and the reply was ‘ I threw it away ‘ . The Nurse said ‘ there was some left ‘ and then I heard laughter !! I was fuming and when I went in I said ‘oh the antibiotics have finished ? ‘ the nurse replied ‘I actually threw it away ‘, but he had 3/4 !! Richard seemed fine so I popped over the road to Sainsbury’s to get a few things I thought he might like and a pillow for myself . He was dozing and I read for a bit . On checking him I wasn’t as happy as earlier and I noticed his urine output had slowed and was darker . His hand swelling was now in both and had gone up one arm . I reported this to a Nurse , she didn’t seem concerned but said the Dr would come and see him . I became more concerned and asked again for help twice . His OBS were taken and I asked for the pulse ox to be left on as I am very aware his level should be 88/92 . I assured her I wouldn’t keep asking for help if it fluctuated but would keep an eye . She told me that they don’t normally do that !! When I again asked where the Dr was as I was concerned my husband was dying , I was politely told she was with a very sick patient and he didn’t have a DNR but my husband has . I replied that the patient had had nearly 2 hours of care and Richard hadn’t had two minutes !! I was panicking at this point but was desperately trying to stay in control . The Dr came a few minutes later and took an arterial blood test to check Oxygen and CO2 . She said she would be back in half an hour . The nurse had sat Richard right up and told me to rest . He did seem a bit better , I had only had 4.5 hours the night before and it was now 3.35 am . I was exhausted and fell asleep on waking 1hour 18 mins later ( I wear a Fitbit ) I looked at Richard I was horrified . His head was slumped , he was soaked with Sylvia all over his chest and his breathing was very shallow and irregular . I was with my sister when she died so had experience of this situation . I got help and again said ‘my husband is dying ‘ . I suddenly had 3 Drs in the room and guess what ? His CO2 was sky high . They whisked him off to CCU and I waited in a side room . The Dr came in and said ‘ MSA I’m not familiar with it ‘ I explained briefly and how we had got to this point . He said Richards cerebellum may have deteriorated , and this is the part of the brain that tells us to breathe . The other possibility was aspiration . He said there are three scenarios. One is Richard May die and that may happen today , it maybe in a few days , he will get agitated due to the oxygen and co2 levels or he may come through but quality of life could be very poor . His swallow had deteriorated also so he may need a peg but was too poorly for that . I told him i had called the SALT team in in January as I thought he needed thickener but they said no . I understood everything as I have learnt as much as I could about what we might face and said no to ventilation . I went home as I could do nothing more, and wasn’t allowed to stay but went back in in the evening . On Thursday a respiratory Dr came to see him ,and said the muscles around his organs maybe a factor , and that he could transfer to Oxford to get his Nippy machine sorted to come home . This takes out carbon dioxide and when he was given it neither the Dr or Nurse explained the importance of it . I asked questions and was told , if quality of sleep is poor at night and you sleep a lot of the day away it is a good thing but it doesn’t save or prolong life . Richard wasn’t keen to use it and I didn’t push him . The Dr also explained if he thought things were too hard for him he may choose to withdraw treatment . He managed to say he had had enough , I needed to have a life and he wanted it over ASAP . I told him he is my life but I would support him in whatever decision he made . It was left that the team would get together then make a plan with us . I am so pleased to say that he started to improve and now almost a month on from this nightmare he is eating puréed food and drinking with thickener . He still has an NG tube and progress is slow but he is medically fit for discharge , and we are just waiting for the decision as to whether to fit a peg . I hope this time next week he is home . I am so lucky to still have him and I am so grateful I could stay as I really think he would have left me otherwise . I am determined to get every single day out of him that I possibly can . I love him so much and won’t ever be ready to loose him . I am so tired of having to constantly be watching everything , checking , fighting and trying to hold it all together . But in future I am going to shout , scream , challenge , stamp and fight harder than I have ever done before (respectfully and politely ) so they all better look out .
Emotional Rollercoaster: The ride began... - Multiple System A...
Emotional Rollercoaster
Oh my goodness. What a traumatic journey. I am so pleased that you have come through and hope that you will get him home soon. Have you got a hospice involved in his care? They can be really supportive of both of you. Take these few days to recharge your batteries and put things in places for when he’s home. Diane
Do you have continuing health care? You really should be having 24 hr nursing care. That will benefit you both? Sorry to read this. I don’t believe that this is uncommon. Sorry for short reply. Not wearing my glasses and am outside. Best wishes.
Richard will be discharged with 6 weeks of care and then CHC may kick in . I would rather continue to do everything myself to be honest , but will put up with whatever I have to do I can get him home .
You are very strong indeed. I wish you the very best.
I have to be , I love him soo much . Thank you for your good wishes.
I would recommend you get nursing care support so you can stay fit and healthy to fight your corner and observe.
oh you poor thing , how traumatic for you and richard , i know doctors aren’t that familiar with MSA but they still have a duty of care , my dad was in royal berks and they seemed to know quite a bit about itand he was looked after , they kept saying he had had a stroke , but i said he was like that before he came in , couldn’t talk etc
i really hope you have more time with him
my dad gave up but he was 84 and had a good life until he was diagnosed at 79
sending hugs xx
Thank you x
I'm so sorry to read this. There is so much to unpick in there in relation to good practice, and sadly other people in this forum will relate to your account of the care received. I can see how your experiences might put you off trying out professional care in the community. We've had carers for my dad for years and they are valuable because you don't know how many years the person is going to need a high level of care for. It's important to keep your own energy levels up. I've embraced the role of being the pushy person that oversees that everything is running as it should- because I don't have the ongoing stamina to do his care myself, but at least I feel advocating for his needs is something I can do effectively. Not gonna lie - it can be frustrating. I would hope that if your hubby can settle back home with the right support and equipment, that you wouldn't have to be actively fighting all the time, and may regain some quality of life together. Remember that he will be observing you and wanting you to be ok just as much as you are for him 🙂 ❤️🌷
Thank you for your reply x
I meant to say it shines through your writing how much you love each other x
He is my Mr Mary Poppins . Practically perfect in every way . I have always loved him so much and I think MSA has made me love him even more . Washing , drying , dressing , moisturising , shaving and being so responsible for his every need and happiness I liken to the love I found overwhelming for my young children . Then the deep love of a wife . He is everything to me and it is only us who understand and share the awful experience of living with MSA . This means we are even closer X
You are doing remarkably well under the circumstances, look after yourselves as best you can. Sending support and love. I'm sure Richard really appreciates everything 😘Helen
xxx
Thank you xx
How on earth do you answer all of that other than love conquers all.I had similar with my Sue and ended up having a 3 doctor discussion to fight for Sues life as she was not breathing well for herself, not something I would want anyone to do, but sometimes we have to.
Keep up your valiant work I am absolutely sure Richard and the family are very proud of you
Paul
Thank you , it’s nice to know you understand xx
What a sad post, you have enough to deal with and need support not confrontation.
You are doing an amazing job looking after Richard.....well done you 
I had an occasion to go to A&E some years ago with L when I was worried about her, when I told the duty doctor she had MSA I was told I was mistaken and another illness was mentioned.
I said no I am not mistaken she has MSA and the doctor wrote " Multiple System Atrophy" on her notepad, I don't think she knew what it was !!
It may not be her fault that she was not up to speed with MSA....... but it's not our fault either.
Keep going and smiling when you can, our thoughts are with you.
Kind Regards
Derek
Just read your recount again (now wearing my glasses and indoors) I totally support what you say about being strong and challenging where you need to. It’s the only way.
This is an important post for this group! Thank you for sharing what must be the toughest days of your lives. Keep fighting!
You shouldn't have to feel this way about any healthcare system. It is fundamentally there to help save, treat or make patients comfortable. We all know there's no cure for this awful condition. But when we need help it needs to be there. Please feed this situation back to your parkinson team, it should and can not be allowed to continue. Thank god your husband has you to be his voice and his support. Best wishes Sharon x
Thank you x
I really would try to get some support - you do need to be able to rest too. Your GP should be able to help with his, I know ours had a care co-ordinator but every trust is different. You can also ask for a social worker who could assist with a care package, the hospice may also be able to help - it's hard asking for help but this is for both of you and may enable you to spend more quality time together. Thinking about it, it should be part of his discharge plan?
I don’t understand 
Gone but never forgotten... 
Going Downhill
