Hello I was just wondering if anyone has any advice about primary progressive MS. My aunty has it and was diagnosed around 10 years ago. She is quite advanced in the disease and her mobility is very poor , maybe only able to do a few steps. She is mainly wheelchair bound. Along with this, she has all the other nasty symptoms such as bowel incontinence, extreme fatigue , spasms , chronic pain etc. She lives with her 80 year old mother and 14 year old daughter. Unfortunately she does not seem to be getting any support from anyone about her illness and no one is giving her any advice. I really want to help her as I can see just how dibilitating the illness is to her both physically and emotionally. No one seems to be offering any advice or support, not the GP, ms nurse or social services. Her main problem is around mobility around the home(which her mother owns) and the morning care. Helping her get up and go to bed. At the moment her elderly mother and teenage daughter do all this however the elderly mother is becoming more weak with age and her daughter is still so young. Please could anyone give any advice on how we can help her ? I just want to help her and her family but I’m stuck on how to do this and the professionals do not seem to be helpful at all Thank you
You sound a terrific niece. The MS nurse has to help, as does her GP & Neurologist! They are the first people to get a system of care in place. Ask your Aunts carer to contact the Multi discipline Team or the MS Nurse.
Make sure the MS Nurse sees your aunt soon and you or a responsible adult can also attend. This will ensure the MS Nurse knows the present, difficult situation. Local Social Services should be able to assess the property & your Aunts needs, providing equipment to help.
Professionals can help if they know of the difficulties, see if the GP, Neuro & MS Nurse will help, it is there job after all. You can email the MS Society or phone the help & advice line.
Good luck Applepie
Yes, your neuro or MS nurse should be able to make an appointment with an occupational therapist too. Mine organised my doorstep, a trolley/walker, a bath board & step, a support for getting on/off the loo too. I suspect she’s seen one before but worth checking as they can be incredibly helpful.
Get in touch with adult social care in your area , she will probably get assessment and may be able to get direct payments or a personal budget for her care needs . They will pay more attention especially if they realise that she has a child who is a young carer. Some people are put off getting help from social care but it has worked well for me . I have had direct payments for a few years now and it’s helped me cope I have teenage children and needed the help to be a mum as well as cope with my disability. Michelle and Frazer xx