My mum (66) has had MS for about 25 years. For many years she has managed very well in an ostrich like sort of way (ie head in sand, ignoring it the best she could). However, her symptoms eventually resulted in early retirement from work and three years ago a very quick downward shift in her health resulted in very limited mobility, double incontinence and dependence on carers 4xdaily to do all personal care, hoist to/from bed to chair to wheelchair, etc. So, life feels very limited to her.
The principle concern for me, however, is the fact she seems to receive no treatment or therapy beyond the annual visit to MS clinic. Very recently her fine motor movements have diminished but nobody medical seems to be keeping anything like a watching eye on her to pick such changes up, and she is very much ‘not one to complain’ so hasn’t called people in herself.
My sister and I are on the verge of writing to the GP to ask how their care plan for my mum works. We are really disheartened and distresssed that not only is there never any discussion with her about attempting any drug therapy (at all, as far as we’re aware), there is also nothing being put in place to try and preserve the limited movements she does still have. I am convinved that physio would help with her prolonging the use of her hands/fingers.
If anybody has info about a ‘typical’ care package/treatment regime/therapy, I’d really welcome hearing about it. I know every person is different and will vary in their specific needs, but I want to know if we’re right to question why she doesn’t seem to be receiving anything.
Thank you all very, very much.