Sticky Blood-Hughes Syndrome Support

Another update

Well what can i say i am now on riveroxaban ( not sure i spelt that right ) which was a blessing in disguise as the enxoparin was upsetting my liver and was the suspected cause of my anemia which is now gone, i am on the gabapentin still and take 3600 mg split over three doses, this dose is helping take the edge off on a 'good' day.

I am awaiting to hear about my chair as the first occupational therapist said i need a transfer chair, but when the wheelchair woman saw me and assessed my range of movement she said i need a self propeling wheelchair but would require a powerchair in the near future, but she has to get permission from the various professionals who have been involved with my care, then she can order the chair and the back supports, then do a home visit it is such a long process, i would get some independance back when outside and indoors on really bad days when crutches just dont help. The social worker wants me to have a carer come in twice a day, but im not going to at the minute, well i have to go so stay strong, stay calm, give yourself a little time to be gentle on yourself, take care everyone xx

7 Replies

They won't let me drive anymore and I am a B/K amputee due APS so I live in my power chair.

Make sure you get one with some power. I have been through enough of them that it makes a huge difference. At least 6-7 miles per hour. Good luck to you I know that the process can take forever!!!


Hi there, I am really pleased to hear about your clear progress, and how you are in charge of handling it all, best wishes to you, and I am very uplifted to hear that the right people are sorting out the right drugs and equipment. Please have a nice day.

Mary F x


I will certainly have a good go at having a good day, my eldest step daughter, her partner and their son and kitten have moved back in and are getting married on 20th october so wedding plans are well underway although costly as she is also 18 in september eeek any ideas of presant ideas anyone ?????


If you are going with a self propelling wheelchair look at the options for powered wheels. This means it takes a lot of the effort out of pushing outside especially on hills etc which can be alot harder than you think. You need a light wheelchair but one that can take those wheels. Also think about how you are going to get it in and out of a car, it's great you want to be independantly but no one ever thinks about that or at least I didnt. You may well need a hoist fitted and then when you move to a powered chair you are all set for that too.

I made loads of mistakes with my first chair but you only find things out by using them. Perhaps hire or ask if you can trial before purchase because once bought its really hard to go back.

Good Luck!


Hmmm think it is too late to ask for powered wheels, as it is already going through the NHS system as originaly i was perscribed just a attendant chair but when i went to the assessment she said a self propelling chair would be better, i tried one out and did ok on it (i think she did in hindsight mention something about power ones but i was rather foggy) hills could be a big problem as i dont have a whole lot of upper body strength, as for cars it doesnt matter as we are selling our car but as i found twice over the last fortnight getting into taxis and getting out is really difficult and painful the first time scared me as the floor was wet and my weak side well went without me im so lucky my husband was able to take the strain.


I think all Taxi's (Black cabs) have to have a ramp and the drivers in my experience always push me in and pull me out. I have never used anything other than a Black cab.

Frankly I could not manage on my own without the powered wheels, I just don't have the strength even on a flat surface like an indoor shopping mall. So I would have to have somebody push me.


I should point out the last post regarding the taxis i was lifted onto the seat by hubby so chair could be folded as there was notenough room as eldest step daughter and baby were getting in too with her pram


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