Latest flare progress.

[Whippetygirl]

Just an update on my latest flare which knocked me for six.

I am still on 16mgs of Prednisilone and will stay there till at least August, All going well at the moment just aching shoulders and arms at the end of the day. Hopefully I can reduce by 0.5mgs every two weeks and once again take it very slowly. I am so cross with myself for forgetting just one mornings Pred. By August l was going to be down to 10mgs and staying there over winter. My stupidity has set me back 5 months. Thank you all so much for for being there.x

[DorsetLady PMRGCAuk volunteer]

Hope you're soon back on track

[PMRpro Ambassador]

That is a bit extreme - really just missing one day's pred? That is mean - we know it is a mean disorder but ...

[Whippetygirl in reply to PMRpro]

Not sure I understand your reply.

[PMRpro Ambassador in reply to Whippetygirl]

That you had such a severe reaction to missing a single dose of pred - that is what you are saying isn't it?

[Whippetygirl in reply to PMRpro]

Yes that is what happened, I can not think of anything else that was different that day. The only change was I normally have porridge and put them in the porridge, that day I had toast, put Pred on one side meaning to have them with a mug of tea and totally forgot. I know I find it hard to pace myself, I hit the ground running and do things I shouldn’t but I certainly did not expect this.

[Whippetygirl in reply to Whippetygirl]

Are you thinking what is dawning on me, picking up that heavy dog food bag maybe did something to my back but the Pred controlled it and when I forgot the morning dose the sleeping dragon was released. To make matters worse my son in law had an accident whilst out on his bike, apparently riding down a cycling lane a dog off lead ran out in front of him and he came off his bike. He was unconscious for about 20mins and was taken to Salford Royal Hospital and had a brain scan. He can not remember anything but the next day he kept phoning his home number asking to speak to his mother who died a year ago. To make matters even more worse the next day his father who has terminal cancer and has two strokes was being sent home as he wanted to die at home and it was falling on my son in law to provide most of the 24hr care as well as working in a very stressful job. My son in law is still very confused can not remember details of his past medical history date of birth etc or how long he has been in hospital. The doctor in charge phoned my daughter to ask if he had any history of seizures as he had just had one, they later found out that his younger brother in his infinite wisdom had told him that his father had only had about 6 days to live as he is now on palliative care. Due to the lock down my daughter has not been allowed to visit him, this has been a very stressful time.Two wittinesses came forward and told the paramedics what had happened but he has no memory of it.

[Whippetygirl in reply to PMRpro]

Please could you read my latest reply and see if you are thinking along the same lines. Many thanks.

[PMRpro Ambassador in reply to Whippetygirl]

I'm not entirely surprised you are having a flare!!!!! YOU may not think this is stressing you but it has to be.

Someone needs to explain to that younger brother what palliative care is - it isn't hospice, it is optimal use of medication so a patient lives better and the patient may live a very long time.

"Both palliative care and hospice care provide comfort. But palliative care can begin at diagnosis, and at the same time as treatment. Hospice care begins after treatment of the disease is stopped and when it is clear that the person is not going to survive the illness." ... "Palliative care involves treatment of individuals who have a serious illness in which a cure or complete reversal of the disease and its process is no longer possible. ... It involves care across the continuum of the patient's illness."

I don't think it should fall on your SIL to provide care - there are charities that help with that when the patient insists on being at home. Macmillan and Marie Curie are two places to start. My friend (a doctor herself) whose husband finally died of secondaries to rectal ca recently had MC nurses overnight so she could sleep for example.

The retrograde amnesia is not unusal with concussion and it can last a while. But in that state - he's in no position to be caring for someone else. Why can't your daughter visit? There are bubble arrangements now - and right from the start isolation could be adjusted for people who were terminally ill.

[Whippetygirl in reply to PMRpro]

My daughter has just phoned to say that the doctors at Salford Royal have asked her to pick him up and take him to Trafford General Hospital to see his father and then take him back to Salford Royal to see if this helps with the stress.If she has to leave him at the door god knows how he is going to find the Stroke Unit without help. I will pass on the information regarding Macmillan and Marie Curie for her to give to the older brother who has taken over organising the arrangements. Thank you for your reply.

[PMRpro Ambassador in reply to Whippetygirl]

We are allowed a carer with a patient going in to the hospital for anything here. Under the circumstances - she is fulfilling that role. After all, she has to take him doesn't she?

[Whippetygirl in reply to PMRpro]

My daughter got a call from the hospital to say they had changed their mind and that they thought it would be too much for him. As she was half way there she said she would drop the clothes off for him . On arrival they said she could go in and see him for five minuets all gowned up. He is unable to stand up or walk properly or hold a conversation for more than a few minutes, he is going to have another brain scan this afternoon.

[PMRpro Ambassador in reply to Whippetygirl]

Oh dear - how upsetting for all concerned. But he is palliative care because they obviously were too late to use the clot-busting drugs or he wasn't suitable. Or is it a stroke due to a bleed?

[Whippetygirl in reply to PMRpro]

It is his father who is terminally ill, they have reduced fluids and only on morphine pump. My son in law had the accident on Monday evening the day before he was being allowed out as he wanted to die at home .

[PMRpro Ambassador in reply to Whippetygirl]

Oh right - sorry, misunderstood.