Tuesday, 19 October 2010

Clinic notes 20/10/10

Clinic notes 20/10/10

Current Medication:
Baclofen            30mg
Pregabalin         200mg
Riluzole             100mg
Ferrograd          325mg
Senna               10ml
Movicol             as required

I am still adjusting my Baclofen dose. 30mg leaves me with leg spasms/shakes 40mg leaves me drowsy and befuddled.

G. P :
On the advice of my speech-therapist, I have requested a "Just In Case Kit" as recommended by the MNDA. I am awaiting an appointment to discuss my particular requirements for the "Kit". My understanding of it is a little sketchy.

District Nurse: 
I have regular visits from the District Nurses and have discussed ongoing concerns, including:
·                  pressure sores
·                  bed pain / postural pain
·                  kidney ache
·                  morning headaches
·                  fatigue
·                  frequent waking
·                  overheating/shaking, teeth chattering and general excessive, adverse reaction to cold
·                  giggling hysterically until cramp of limbs, neck, throat, diaphragm!
memory failure

Lung Clinic:
- Pending details from Urology, the Lung Clinic has agreed to supervise my respiratory health during a suprapubic catheter insertion. I will be admitted to hospital for a few days.

- awaiting appointment for a suprapubic catheter insertion. I expect to have a spinal anaesthetic. Urology will liaise with the Lung Clinic.
I can no longer weight-bear and use a hoist for all transfers. I have found 2 public toilets with hoists, though none in the Hospital.
In the mean time, some of the urgency has been allieviated, with the discovery of the 'Shoe and Sarong Technique'!

- I had a Mirena coil fitted 18/02/10 My periods have not regulated nor diminished. I intend to discuss an additional prescription of norethisterone, with my G. P. This has been effective for me, in the past but I am unsure of the implications of long-term use. Cauterisation is not an option, as it requires a general anaesthetic. I have a further consultation booked, with Gynaecology for 02/12/10. I have a prescription/request form, for blood tests, prior to that appointment.

Speech and Language:
-My Speech therapist has returned, following her maternity leave.
I experience frequent choking, from brittle foods, thin liquids or saliva. This happens mainly when I am tired, after exercise or exertion, in the evening and at night.
My speech has become increasingly unintelligible, particularly when I am tired. It is tiring to speak at all and I often reach a point of such utter exhaustion, that I am unable to form any word or meaningful sound. At these times I suffer blinding, thudding headaches.

- my RIG is doing fine; no excessive seepage or soreness.
I am tolerating flushes and overnight feed well.
The transition to overnight feeding has been surprisingly smooth : my increased reliance on the hoist made daytime use impracticable. I was becoming quite weak. When the dietician suggested the change, I was relieved. Despite all my previous protestations decrying the overnight feed, it has proved a resounding success.

- 750ml Nutrison Complete, overnight + 1 meal during the day, bowl of thick soup or equivalent.

I continue to get immeasurable benefit from a regular hydrotherapy session.
I could not quantify the positive effect that the pool and excercise has on my stress and tension level.
After hydrotherapy on a Friday, I have noticeably improved circulation throughout the weekend. My joints feel 'easier', less stiff and swollen. This also lasts for a few days.
I certainly sleep better on Friday nights and wake feeling more refreshed.
I am able to move or be moved, in the water, in ways that I can barely imagine, let alone remember on land.

  - The physiotherapist has provided a Vista Neck brace and Air-Soft Hand splints. We discussed the manipulation that we can give to my joints at home. The physiotherapist agreed to come to my house and do some passive excercise training.

Occupational Therapist: 
- My Occupational Therapist has arranged an additional Ceiling Track for the Freeway P200 Hoist, through Westhome. I still have a Closomat toilet and a Profiling Bed

Moving and Handling:
- A Training company provides ongoing advice, assistance and training; their Occupational Therapist has helped devise my handling schedule etc

-I can now access the team in the health centre and used the drop-in service, when my ingrown toenails became infected. The podiatrist advised me,  re poor circulation, to elevate my legs during the day, as well as at night. 

- The orthotics department, have made me a pair of boots, to try to improve or preserve posture and support my ankle. I have a further appointment for 06/12/10 when I will be measured and cast for a splint. The splint made on my previous visit  no longer fits: it could have been made for another leg!

Care Funding:
 Friends help me to manage my support needs and we are pursuing a review of my current care provision.

Assistive Technology:
 -An NHS team is helping me to customise my Tobii C-Eye (P10).
They have provided a Possum Freedom system that allows hands free operation of my door intercom/phone and gives me a one button press call system to upstairs. We are in regular contact, via email. They are always helpful, if somebody has to phone them.
I recently 'starred' in a video interview for their Website, extolling the virtues of the Tobii C-Eye ( P10 ).

Wheelchair  Services:
- I now have foot straps to stop my feet slipping off the foot-plate.
I am still quite adept at manouvering my Invacare Spectra Plus but am able to maintain ever shorter distances. I have a wrist strap for 'walks' but need help halfway round the reservoir.

Current anxiety triggers: 'Enduring Power of Attorney' - Finance, Staffing/Care Plan, Christmas, Ex, House, Loneliness

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