Hi Everyone

I wanted to discuss my recent experience in hospital for getting a Rig tube inserted and ask others here on the forum not about the specific procedure itself but more generally about being admitted to a hospital due to complications associated with MND and how they found it. First a little about myself. I'm living in Ireland and was diagnosed around 4 years ago with MND. I had symptoms in my arms for around 18 months before that on and off and delayed going to the doctor as I thought it was pretty trivial. Once I went to my GP my diagnosis was quick enough by a neurologist two weeks later. I currently attend an out patient clinic for MND every three months and I have access to the community OT and nurse along with a Speech therapist. Carers come in each morning to help clean and dress me and we are currently exploring getting more home help. I also go into the hospice roughly once every four months for a week of respite and I have access to the palliative care team there. I live with my parents as I'm single and aged 43.

I found the hospital visit for the Rig quite trying. My stay lasted 19 days which was longer than I thought it would be. The reasons for this include the medical team over here being cautious about the operation and testing everything prior to going ahead with the procedure. Also on the first attempt one of the drugs given to me for anesthetic caused my heart rate to accelerate suddenly and I had to abandon it for another few days. Even though I was on a neurology ward and the care staff were well used to dealing with MND. Actually there was another patient there at the time with the disease. Although the staff are experienced I found communication slow and difficult with my eye gaze system. Shift changes and new staff each few days was a pain as you felt like I was back to square one with communication. That said I have nothing but praise for the staff who were excellent and very hard working. They did their best to ensure my stay was comfortable. I did have issues during the stay mostly with the toilet and sleeping on a busy ward.

So after the stay in hospital and reading a few threads on the forum I'm wondering about two or three things really. The first one is pretty straight forward and it is this. I now have a Rig tube in along with a foley catheter. Both of these are working well for me and I'm happy. Are there any other standard things like these that mnd patients get hospitals to put in. I can't think of anything else but do other people with mnd a long time have other implants like ventilators attached or something else I should be aware of down the road.

The other really important question is how often do people need hospitalization and what are the reasons behind it. I can cope with mnd itself and with carers and the hospice but the thought of frequent hospital stays is getting me down and isn't something I would like to face. So what is the best way to avoid them and how do people cope with it especially with the difficulty in communication with staff. The rig tube stay was OK but that was a specialized neurology ward. I spent two nights in a general Hospital last year when I could still talk and I found it very difficult to cope in general. The staff where good but not used to mnd patients I guess.

Any one with any experiences of what I'm getting at I'd love to hear your thoughts on it.