MSA affected by Covid

[Jud11]

My husband who is 5 years into this dreadful condition is currently in hospital due to COVID affecting his unstable blood pressure. Yesterday was such an awful day, my husband had several low blood pressure episodes, at one point his pressure was 43/31. He was fine when lying down but as soon as he tried sitting up or transferring onto shower chair to self catheterise he would faint. In desperation I had to call paramedics in despite my best efforts to raise his pressures, he was then taken to hospital. His pressures seem to be relatively normal today but his heart is being checked out in case COVID has had an effect on that.

I wondered if anyone other MSA sufferers have had similar experiences when suffering with COVID. I have found it very difficult leaving my husband under the care of the hospital, as all of the medics I encountered had no knowledge of the condition. I must point out that the care he has received has been very good though. This has been his first hospitalisation since diagnosis so guess it has been a steep learning curve for us.

[Tongue_twister]

Hi Jud11 I haven’t had hospitalisation with covid but I just wanted to share that it was the covid vaccine that actually caused my condition to MSA and I agree that hardly anyone including the medical professionals understand this condition and how important it is to get your medication on time every time. I am 52 years old and I’m fiercely independent but it’s hard sometimes. I am currently in a Care Home but I’m miles away from my boys and friends which me feel extremely isolated. I’m so sorry to hear what you and your husband are going through. It’s so hard and with the medical professionals knowing little or nothing about this condition is deeply sad. I wish you and your husband every blessing and empathy in your journey xxxx

[5456partner]

Hi Jud11, so sorry to hear what you and your husband are going through.can you get any information from the MSS trust to give to medical staff?my husband is newly diagnosed with MSA and currently I have covid. Just praying he won't get it, he's currently beg but I'm having to care totally for him as the carers can't come in with vivid in the house. I do hope your husband is home again soon. Love R

[Jud11 in reply to 5456partner]

Thank you for your response. My husband still in hospital but due to be discharged soon, he has recovered and his blood pressure has stabilised. As I too have COVID I have not been able to visit him but our children have been each day. My daughter reported that two of the Doctors treating my husband had looked into MSA and tried to understand the low blood pressure issues, I did find this encouraging. I do hope you recover quickly and your husband does not catch It. So hard being a carer when you do not feel well. Kind regards.

[5456partner in reply to Jud11]

So glad he may be home today. Hope you both get over covid soon without long term effects. Good your children were able to visit him at least. We're just 3 months since diagnosis, but had seen the tsunami coming for a couple of years. Still hard when it hits. Glad you're living in such a good place for you both, that must help. We moved into a house 2 years ago that is so much easier for us, no outside steps, small level garden and we have a starlift fitted now so whole house accessible. Still trying to get all the right equipment though, takes time. All the best, R xx

[5456partner]

Apologies for my typos earlier!

[Jud11 in reply to 5456partner]

😂😂👍👍

[Epace]

I am really sorry hear your husband and you are having a rough time. My hwp diagnosed since 2016, I always thought something else now like you blood pressure issues, always shadowing him to toilet! Or any time he stands lots going on😢going to see msa specialist wed but pretty sure not what we want to hear. Keep battling on your doing a great job , its all we can do.

[Jud11 in reply to Epace]

Thank you for your kind supportive words. Hopefully my husband home today from hospital🤞 I was so scared when the blood pressure went so low and he was loosing consciousness, but now realise it was the effects of COVID and he had become dehydrated causing the crisis with blood pressure. It is such a complex condition and you just have to try and get through each day as best you can. Mobility has really declined over the past few months, which of course makes life more difficult, fortunately we moved to a retirement village 2 years ago and apartment we live in is wheelchair friendly with an adapted wet room. Hope you get on well with MSA specialist on Wednesday. Kind regards.

[Epace in reply to Jud11]

glad to hear your husband is back home in your safe hands, we can only battle on, each day different. We can only do put best.

[Epace in reply to Jud11]

can I ask does your husband sleep a lot?

[Jud11 in reply to Epace]

Thank you it was good to get him home and he seems as good as he could be given the condition. In answer to your question about sleep, he does doze off a lot more during the day and needs to go to bed much earlier. If we go out and mix socially, he enjoys it but soon gets fatigued. We just have to live our lives within these confines. Life is just not easy anymore! Hope tomorrow goes well for you with MSA specialist. Best regards.