Today seemed quite manic for some reason. The physio came to do the routine check ups on Chris. She told us that Cornwall wheelchair services would not supply the MND recommended Epioc wheelchairs, which was something we didn`t want to hear, plus he would need to be completely off his feet before they would assess him for one, which would then involve weeks of him waiting for a less suitable wheelchair to be be delivered. How is it right that people are left with absolutely no independence like that? It is so wrong.
Chris also had another PIP letter saying he has to have an assessment on the 20th now. I was told to phone again so they could postpone it again. What a way to run a system. I emailed Chris`s MND nurse and she said to contact the MNDA as they were now employing someone specifically to deal with these problems. The person I spoke to took down Chris`s details and she said the usual wait for PIP was around 6 months and if he hadn`t heard by then they would write on his behalf. She also recommended writing to our MP too, which I did.
We then had phone calls from the palliative care nurse wanting to make an appointment and the dietician telephoned to do a phone consultation with Chris and to arrange delivery of the feed pump and feed.
The local MND visitor then phoned to make an appointment too. We then had family phone calls and the odd cold call thrown in, I felt like I had been on the phone all day.
Chris had to make a couple of business calls, which he was concerned about because he is very self conscious of his speech and I think that makes him worse.
On a good note Chris`s cousin came to visit with details and tickets for the fund raising fashion show she is arranging for the MNDA. She has worked hard, we hope it goes well.
As much as we hate taking Chloe back to Brighton, I think we`ll both be glad to get away from home again for a couple of days.
We really can`t get away from this disease, no matter how much we try. Give us a bloody break MND.
