Clinic notes 10/03/10
1. Current Medication:
Movicol as required
2. I have not reduced the Baclofen. There have been so many changes in medication that I want to be on an even keel before I change anything.
3. My scan confirmed PCOS. I had a Mirena coil fitted last month.
4. I am still enjoying Hydro and I am getting enormous benefit that lasts a few days and has a cumulative effect. I really know when I have to miss a week.
5. I would like a review of the passive exercises that my staff do with me and they in turn have asked for further training/ refresher.
6. A member of the podiatry team calls at my home, to cut my nails as required. I am concerned that my toes are curled and sore.
7. My RIG site had an infection that took some time to clear up. It is still sore and a little red but much improved. I have completed the course of antibiotics.
8. I have noticed and other people have told me that I have put on weight. I would like to review my diet/feed.
9. I attended the Lung Clinic The consultant was happy with my results and booked another appointment for six months time. I can only concur that a lot of the difficulty was anxiety. I have taken steps to try to alleviate this (mainly the Power of Attorney). Mainly dealing with staffing issues and my financial affairs. It helps that Christmas is over!
10. I have signed 'Enduring Power of Attorney' forms, which are with my solicitor for processing – My family have split responsibility. I don't hold much hope that this will improve things dramatically.
11. I do feel that my speech has deteriorated and my manual dexterity has decreased further. I am glad to be the first person in the UK to get a Tobii C-Eye. I am not proficient but enjoying the challenge! There are quite a lot of glitches!
12. I need to explain and discuss difficulties of using the toilet. This is not a problem at home, as facilities are in place but even in hospital I am required to use a hoist in a ward as the disabled toilets are unusable for me, even with assistance. Using public disabled facilities e.g. bars/restaurants is no longer practicable. I want to explore medical/surgical solutions or any other suggestions.
13. My wheelchair has now taken on an electrical life of its own and keeps giving shocks to my staff and me. I have reported it to wheelchair services but there is, apparently, little they can do.
14. I am struggling to use the phone, (I cannot press the buttons). I am fine, at my desk, in the chair as I have a possum phone / door control. I cannot use it, when I am outside, when I am in bed or sitting somewhere else in the house, out of range. I also struggle to operate the controls on my bed: this can cause severe discomfort. Do you know of a solution?
15. I experience considerable back pain and feel my neck muscles becoming slightly weaker.
16. I still have not moved house! Therefore, I have not changed doctor and still have no dentist, as there is no access available at my dentist's surgery.
17. The OT refused my request for a through-floor lift in the new house.
18. There is much to do, once I have the keys: MNDA have agreed to fund the removal of the closomat toilet and I intend to ask them to help with the cost of flooring.
19. When I have moved, I will be with a different MNDA rep; we have not yet met. Somebody mentioned that the MNDA are trialling some notes. I would like to be involved and take it a step further, to dedicate a secure web page for my patient held records. MND Connect was going to forward the template but has not, to date.
20. The courses at College did not pan out because I was over-qualified. The plan to learn permaculture failed, when I lost my driver. I have to find something to do during the day as I am perilously close to resorting to daytime TV!