Submitted by MMHHPP on Sun, 2016-10-30 15:17

Hi all, i really need your advise. Specially from those living in the uk and progressing.i am reaching cracking point. I had the occupational therapist i have phoned the council but i seem not to get good advise.from the services you can get buy or pay ,.... which one is the one you value the most? Eg cleaner, someone to look after children take them to school,  carer. I have the help of my husband but he is reaching a point where all this is too much,  keeping his work, looking after children, cooking, shoping.... all too intense because of his demanding job. And he travels a lot too.i am progressing rapidly, staggering to go upstairs, walking with extreme difficulty, awful balance, difficult to get dressed and go in/out shower, i have a scooter to move outside that is my only blessing....but i am unable to do anything at home unless sitting down and not for long.i have no experince on what are my needs going to be in the short future and i struggle to come with ideas.if any of you is in the same situation and found an answer i would like to hear from you.Take carexx

Hi there MMHHPP

(God, I'd love to know what that stands for).

A while after I found myself no longer able to work, I was faced with the mounting pressures of administrative tasks, form filling and struggling through the jungle of the benefits system.

I confessed in a previous post that I have actually made mistakes in the past (two in fact!). One thing in my life that I actually got absolutely right was my approach to claiming and seeking appropriate help. Where I live, there is an organisation called The Prince's Trust; some people refer to it as "Swansea Carers". The stated aim of the organisation is not to actually support people like me but to support the carers of people like me. Now my woman claims that she is a "don't-carer" so I went along to see these people for myself. They were outstandingly great. They were on my side; filling out all my forms and guiding me through how to answer. Boy, did these people know their job!

Now I doubt very much weather Swansea Carers will be able to help you (unless your carer is a Swansea resident too). However, I strongly suspect that there may well be an equivalent in your area (I don't know where your area is). Many organisations are set up to assist carers and the pressures that carers face. Your husband will no doubt be facing similar pressures to many others. Your husband will need all the support that he can get in order to help support you. Please look for a carers support organisation in your area so as to give that support to your husband and to you.

I know that the MS Society were setting up some sort of outreach support for MSers is across England. I know that they have a free helpline number: 0808 800 8000 Monday to Friday between 9am and 9pm. Although I am not the MS Society's greatest fan, I take the view that if they can do some good then let them do it.

Anyway, hopefully others will be able to chip in and help here.


“Don't believe everything you read on the internet.”

―    Abraham Lincoln

Hi there,

My occupational therapist helped me with grab bars for the bathroom and bed.  These are a huge help.  She also directed me to a company to put in a stair lift, which has made it possible for me to stay in my home. 

I had to pay for these BUT I just tell myself that this is money I might have wasted on a vacation if I had been healthyImage removed.

Thanks so much superguy and healthygirl!

it is so difficult when big changes happen to find the right answe!!!!

i will take into account your comments. 

thanks again. Xxxx

 MMHHPPRRMS since 2010. Asthma sufferer during  2008-2012 - Free of asthma since started  Wheldon protocol- october 2012 doxy 200mg, Azytrom 3x week, NAC 1200g day and vitamins-  January 2013 started Flagyl pulses. i s


I’m so sorry to hear your news. It does seem possible that chronic infection can provoke a true secondary auto-immune state. If you are no longer taking it, it may be worth re-starting trying long-term oral doxycycline (100 mg twice a day) not so much for its antibacterial activity as for its immunomodulatory properties.

D W - [Myalgia and hypertension (typically 155/95.) Began (2003) taking doxycycline and macrolide and later adding metronidazole. No medication now. Morning BP typically 110/75]

M, this advice is a good idea because it is used with several auto-immune diseases. 

However, with regards to making your day to day living easier, I would definitely go for online shopping: you can arrange for regular deliveries which come in one hour slots, so you aren't waiting for hours not knowing what to do.  Most companies will bring the stuff in and put it on your kitchen table, then if you have a cleaner or carer, they can put it away for you.  Waitrose or Sainsburys have good lines of pre-prepared food which just need heating up to make life a bit easier for both you and your husband.

Now, a very good thing for you to do would be yoga: an exercise that is kind and gentle.  There are movements which you can do whilst sitting in a chair and others on your bed.  Then, as Boadicea does, puzzles and sudoku to keep your mind active........................Sarah

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

Thanks Sarah!

i will have of this in mind. Take care xxx

 MMHHPPRRMS since 2010. Asthma sufferer during  2008-2012 - Free of asthma since started  Wheldon protocol- october 2012 doxy 200mg, Azytrom 3x week, NAC 1200g day and vitamins-  January 2013 started Flagyl pulses. i s

Thanks dw.

i am still taking fingolimod. Will this be "as effective" as doxycicline? shall i take both?  

Not sure because unfortunatelly it did not work for me in the past , i mean the protocol and i was on it for 2 years...........

 MMHHPPRRMS since 2010. Asthma sufferer during  2008-2012 - Free of asthma since started  Wheldon protocol- october 2012 doxy 200mg, Azytrom 3x week, NAC 1200g day and vitamins-  January 2013 started Flagyl pulses. i s