Glad 2016 is gone.

Glad 2016 is gone.

It started out ok then I heard a good friend had cancer again.  He died in March.  I caught the flu in April and on the 16th I was admitted to hospital unable to move from the waist down.  I have not walked since except a few steps in the hydro pool.  I was in hospital in isolation for 10 days, 3 days after I was admitted one of my very much loved dogs died unexpectedly, I was devastated.  Then I went to rehab for 13 weeks.  All rehab taught me was to stand and slide board, but not how to slide board to a car.  So I was trapped at home.  They did nothing to try to get me walking again, if they had maybe I would be able to take at least a few steps to transfer.  Their attitude was ‘you have msi so this is your new life’ .  I had to keep repeating ‘I walked with a 4 wheel walker the day I went to hospital, I did clinical Pilates the day before I went to hospital.’  They sent me home able to stand at a rail while my husband changed chair for commode/shower chair and back again.  The rails were too high but they left me.  So 2 weeks after getting home I was back in hospital with an injured arm.  2 weeks there and back to rehab for 2 weeks to learn how to stand with a standing hoist, that did not happen.  They did not want to send me back to rehab but to aa care home.  My husband escalated it so they took me back.  I came home not standing or able to slid board.  The physiotherapist they had organised came 4 days after i got home and STOOD me up.  She has been working hard to help me get back to some independence.  I came home on the 28th of august.  I pulsed in April then took 1 metroi on the 3rd January to see how I coped.  Usual, headache, inflammationi in fingers and toes.  I may do 1 or 2 days every few weeks rather than full pulses every month.  I kept taking roxyi and doxyi while in hospital.  So 4 years and 3 months on things are much worse in many ways.    I still hope.

Comments

Sharon - so sorry to hear

Sharon - so sorry to hear about 2016. As soon as i find my magic wand I will hand deliver it! Keep up the good fight. (Pretend you are a boarder collie?)

Take it easy on yourself :-)

Mark

Shilston - so sorry to read

Shilston - so sorry to read all this.  You started a while after me.  Just in case it helps you, I wanted to let you know that I have never managed pulses of more than 2 days - and it's taken me a very long time to even manage that - but I have been seeing good gradual improvement with that, so I think you are right to try to do 1 or 2 days every few weeks and not worry about full pulses each month.  I've built up from 1 or 2 days every couple of weeks to 1 day every week and now 2 days every week.  Never, ever stop hoping!  Sending gentle hugs!

Neuroi symptoms & many health problems from 1989. NACi+all supps(04/11) CAPi(05/11)

hi boadiceathanks for the

hi boadicea

thanks for the hug.  i have built up to 2 days a month with metroi so will keep going with that for a while.  my problem at the moment is that i don't have any improvement going on.  i still can't move my legs very much, i am talking about being able to move them mm rather than cms.  i also now have lots of tone in the muscels which makes things very difficult.  it is very hard being in a wheelchair all the time and needing help for most things.  i still have a small amount of hope.

MSi Diagnosed 07/03/05, copaxone Jan 2011 to Jan 2013, started doxyi 13/10/12, started roxyi 06/11/12, increased doxy 28/11/12. first metroi pulse 01/01/13. Tinii Dec 2014. Fampyra,B12,Vit C,Vit D3,Vit E,Vit K2, NACi,ALA,AcetylL-Carnitine,Fish oil,

Sharon, I am afraid that ‘you

Sharon, I am afraid that ‘you have msi so this is your new life’  is the kind of banal  comment that every single MS person on this site will have to put up with if we have a sudden downturn for whatever reason.  You know what you went through just before losing the power in your legs but nobody at rehab does, any more than they know that you had lost your l'hermittes sign not long before.  (I've been looking up your old posts!)  Never, ever stop hoping and always keep trying and keep your optimism..................Sarah

Completed Stratton/Wheldon regime for aggressive secondary progressive MSi in June 2007, after four years, three of which intermittent.   Still improving bit by bit and no relapses since finishing treatment.

thanks for the encouragment.

thanks for the encouragment.

MSi Diagnosed 07/03/05, copaxone Jan 2011 to Jan 2013, started doxyi 13/10/12, started roxyi 06/11/12, increased doxy 28/11/12. first metroi pulse 01/01/13. Tinii Dec 2014. Fampyra,B12,Vit C,Vit D3,Vit E,Vit K2, NACi,ALA,AcetylL-Carnitine,Fish oil,

So Sorry/Good Luck

I concur with liltiger.  I wondered how you were going.  I too am not good.  Good luck ànd feel free to contact me at any time should you have the inclination!

Jam

Oh dear - sorry you went

Oh dear - sorry you went through all that... :(

I hope your physio can elp you get mobile again and you get some improvement with treatment over time as others have 

Take care - Happy New Year - hopefully a much better one this year

Started NACi Sept'14... 100mg Doxyi Dec'14...  Roxi 13Dec '14 Supplementsi...