Our Journey

[Derek1uk]

So my beautiful wife and companion for over 30yrs has decided that she needs some time in a hospice, she began this journey with Symptoms in 2019 but we didn't get to see a Neurologist who knew what he was talking about until 2023 as the initial one in 2019 said she had Fybromyalgia and stress/tiredness from her job and FOBBED us off..... So she'd gone from a strong woman in pre 2019 working through Covid until Sept 2022 when a fall happened at home and she could no longer work. My wife waited 2yrs as we were told we couldn't see a Neurologist on the NHS and would have to pay around £500 for a zoom meeting for 15mins. Onto 2023 and after Covid had come and gone my wife was FINALLY seen by a Locum Neurologist at Salford Royal and diagnosed with PSP in Jan 2023 but rediagnosed in March 2023 with MSA, well our world was BLOWN apart as you could imagine. To be told she had a terminal condition and one there was no tablet for it was devastating, By Apr 2023 my wife was unable to weight bear and using a wheelchair and very unwell, she'd not been able to have a shower at home as she couldnt get upstairs and would have to have washes in our lounge where she was now sleeping. By Easter 2023 we managed to get her some time in the Hospice for medication management but i had to give up my job after working 20yrs for the same company. So after 2wks she came home but totally relied on me to be her carer, we had help with a few hours of care ie personal care in the morning. We managed to apply for an adapted Bungalow with the local council as the house we lived in since 1995 wasn't suitable. We moved in on July 2023 and made it a home, but by this time my wife was needing more help so we applied for CHC funding but in Aug 2023 we were turned down. Our daughter quickly arranged her wedding for Nov 2023 and my wife and I got to see our daughter happily married, but after this my wife's health deteriorated quite quickly. Christmas came and went and we went to see consultants at Wythenshawe hospital who diagnosed my wife with Sleep Apnea (both central and Obstructive) and was initially in a C-pap but since been changed to a Bi-pap, a Cough Assist, a Nebuliser and a suction machine.......We had my wife's care package looked at again and was granted CHC, so her package now needed to include 2 night sits a week and carers for 3hrs three times a week during the day plus a few hours the remaining days. My wife's hands are now closed and she's in terrible pain daily, she's unable to feed herself and gets regular infections both Chest and Urine infections. She's incontinent and suffers with breathing issues. In April 2024 we were seen by a Neuro Physio who suggested Botox for the pain and that worked, but we were told the next dose would by in 6wks..........5 months later it hasnt happened. My wife has had Physio at home but for help with her hands and legs to see if movement can happen, sadly with very little success In the summer my wife has really struggled with any high temperatures outside (of course with this condition you struggle to fluctuate temperature). So she's now housebound as back in Sept 2023 we couldn't afford the advance payments for a WAV and we couldn't wait 18mths for the vehicle.So we come full circle to going back to the hospice for "Pain management" and respite, life has been tough for her and I honestly don't know how she's done it. Life has been hard for me too, to see someone SO strong pre 2019 to now a shadow of her former self is heartbreaking. We've been part of the MSA Trust for 2yrs and they've helped a lot and I've become part of Andys Man Club (a Peer to Peer suicide prevention charity) where I'm a Facilitator, we meet up every Monday between 7pm and 9pm to chat about our life and share our pains which has massively helped. We've had counselling from the Hospice and MIND and they've been great but I just wish there was a tablet.....or treatment for this HORRIBLE condition that's taking my wife away from us. So let's see how things go in the time that my wife is in the Hospice, wish us luck please. I hope my story........our story helps.

[FredaE]

oh Derek i am so sorry to hear your story........with nothing i can do to help to make things better for you both. i can just send love and best wishes

[Anovis]

Thank you for telling us your story. Ours is similar. My husband has been in hospice for 4 months and our experience has been positive (we live in the US). We no longer make trips to the ER, doctors, etc. We are homebound and his hospice team comes to us weekly. They really do focus on comfort and pain control which has made his quality of life better. Wishing you a good experience.

[Paul_and_Sue_Wood]

Derek

We all feel for you as we are all on a similar journey.

What shows is a loving couple looking after each other through thick and thin.

Enjoy every moment you get and good look to you both.

Paul and Sue

[Jolanes]

so sorry Derek, thank you for sharing. So many of understand and empathise. The understanding and subsequent lack of help and care for this disease is terrible x

[Derkie54]

Hello,

You are in our thoughts, you have struggled together and it's so relentless isn't it.

You've done your best Derek, you can't do anymore than that.

My wife continues to struggle but her MSA is progressing slowly, L sleeps and is washed in the lounge like your dear wife was, and has had this terrible MSA for many years.

Sorry we can't help you, take care.

Derek

[Kaye31]

I’m so sorry to read your story.

We have an excellent OT that’s sorts so much for us and now a palliative nurse who whips everyone into shape!

We also opted for a mobility assist (may have that wrong) hoist for the car rather than a wav which was too expensive. We can now go off for a few hours which is life changing for us both x

[SaltyFlorist]

Thank you for sharing your story. What a lucky lady she is to have such a compassionate carer.

It is shocking and heartbreaking that we can’t get proper and immediate care. Sending wishes for relief from pain.

[Ovx823k]

Your story about your wife is a mirror image of my wife’s. Like your wife my wife was a strong person a carer for 35 years. Back in 2017 she passed out in the street coming home from her work and really bashed her head. This happened again about 4 months later after seeing several doctors like most doctors they said she had parkingsons.She was in the royal free hospital in Queens Square London for 6 months they are specialist in the field of MSA. My wife missed my sons wedding in Las Vegas we were going as well but had to cancel due to my wife’s condition .She went to rehab for 6 weeks this done her the world of good. When she came home and could only walk with my help about 20 of so feet this was in June 2021. But the next 18 months she went down hill could not walk lost her voice finding it hard to swallow her food very low blood pressure. She had coat hanger pain in her neck but Botox did help at a cost of £600 and lots of urine infections even though she had a pubic catheter. As you say the MSA Trust are a great helpi donate to them each month. Unfortunately my wife passed away in March 2023 from a heart attack I asked for no flowers at her funeral and raised just over a £1000 for trust. Let’s hope they find a cure for this awful condition soon.