angeldust
18 posts
Mar 25, 2007
2:45 PM
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Hi everyone well were do i start.
I live in a flat up 5 flights of stairs and its killing me to get up and down them everyday.
I have to rest after each flight.
With shopping and on bad days il have to stop half way up one.
Anyway just want to know if anyone else has the same problem and if it gets any better.
Im new to this.
Thanks
Milya
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trameeks
11 posts
Mar 25, 2007
6:03 PM
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whew! That makes me tired,Bless your heart. I don't know how severe your mg is but if it were me I probably would have to start looking for another place to live. In my opinion stairs and mg don't mix very well. I wish I had an easier solution for you.
I read you are not on meds yet, is that still true? If it is it might be time to start thinking about getting on some.
That might help you some but I don't think it will for long if you have to keep going up those stairs.Tiffany
Attalla,Alabama
Last Edited on 25-Mar-2007 6:06 PM
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angeldust
19 posts
Mar 28, 2007
7:01 AM
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thanks
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bobtmf
92 posts
Mar 28, 2007
9:30 AM
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Hi Angel
Sorry to hear you are strugling so much, it must be very hard for you and something of an effort just to go about your daily routines.Meds might help you but in the long run it might be better for you health wise to approach someone with regrds to moving lower down the flats or even to ground level. I suppose it's easy to say when it isn't your home but it might be better for you. If you get no joy try citizens advice they are brill at this sort of thing.
Hope it works out for you.
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Bob Barron
Margate Kent
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angeldust
21 posts
Mar 30, 2007
1:23 PM
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thanks but the council dont like moving people im stuck here.
I think sometimes you just have to put up with it.
milya
london
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Liz181
280 posts
Mar 30, 2007
8:08 PM
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Have you given medical evidence to the council about your MG, have they said they won't move you? It must be awful having to go up and down those stairs, keep trying to persuade them. If necessary, take it to your MP. Good luck
Liz
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bobtmf
93 posts
Mar 31, 2007
10:51 PM
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I agree i think you need to get letters from your GP and neuro and if neccesary your MP.
It is not right that you have to put up with this, it may take some time but keep fighting.
Good luck
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Bob Barron
Margate Kent
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angeldust
23 posts
Apr 03, 2007
9:04 AM
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Hi all just to tell you the latest the council will not move me. so i guess im stuck
milya
london
Last Edited on 4-Apr-2007 3:14 AM
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ASB
32 posts
Apr 04, 2007
9:39 AM
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hi angeldust, you don't really say what steps you have taken other than ending up at "the council won't move me". I assume you have approached the housing department who have essentially fobbed you off. This does not have to be the end of the matter. Assuming you feel up to it (and I appreciate you may well not) there are a number of ways of escalating (some of which you may also have tried). There is a statutory obligation to provide suitable housing to public sector tenants. If your property is managed by a housing association (a lot/most now are) then contact them. If it is the housing association you contacted then contact the borough housing department. You can probably short circuit this by getting in contact with your elected member (I assume a borough councillor, we still have district councils here). If they are worthy of their post then they should easily be persuaded to take up the cudgels on your behalf. If you are unable to make any progess - because housing remain uninterested - then you should consider a formal complaint of maladministration to the district auditor. If you cannot get your elected member interested then you should consider a formal complaint to the standards board. your elected member should also have the ear of your MP - you can of course approach them directly. If the authority do not actually have any more suitable housing - be it because of occupancy or location etc then you are a bit stuck. The challenge is to get their attention and ensure they understand you are serious. My wife is a district councillor and does spend a lot of time dealing with constituents housing issues. Generally she manages to find some sort of resolution. It is disappointing that the housing department is often only motivated by member involvement (this normally filters through the potfolio holder to the chief executive to the director of housing to the specific houding staff). I hope this is some help and you are able to get a more satisfactory resolution. ---------------------
Simon, Somerset UK
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Liz181
287 posts
Apr 07, 2007
2:08 AM
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I agree with Simon, I know, to give you an idea, that insurance companies say no on the assumption that whatever percentage of people will not take it further, they say no again, so a further percentage of people won't take it further etc etc. You must not accept no as an answer. Please go to the CAB for further advice and your local MP. You could even contact the press if you feel up to it. Unfortunately, it seems that in most walks of life, it's the people who jump up and down the most (not an appropriate analogy for MG I know!) that get results. Liz
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Jules68
230 posts
Apr 07, 2007
3:48 AM
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Hi Angel,
I'm so sorry to hear that the council are being obstinate but as someone has already said they probably say no to everyone in the hope that it reduces the number of requests. If nothing else I've learnt never to give in and keep fighting no matter how hard and how tiring it becomes. I agree that you need to bombard them with information. I only speak from experience relating to my DLA claim which was refused. I sent pages and pages of information about every single aspect of my daily tasks I found difficult to carry out. Keep a diary about the amount of time you have to walk up and down the stairs and how it makes you feel and what the knock on effects are. Send them plenty of literature from this site and suggest that as we are now part of the EU, when in Europe do as the Europeans do and suggest the court of human rights. We all have a basic right to a suitable home and if the council are to provide that for someone with MG then it must be with either no steps or fewer steps. Would they give someone who'd had a stroke a top floor flat? More's the point, would they get away with it? Go girl you gotta fight and one day, not too far from here, you'll be sitting in your ground floor flat feeling a whole lot stronger and better than you do right now! FIGHT! FIGHT! FIGHT! Good luck my love you deserve it.
Jules x
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Louisa
15 posts
Apr 08, 2007
3:16 AM
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Ive found the council to be so ignorant no matter how many neuro letters have been written for me. They refuse to house me at all. When i walked into have a meeting the first thing that was said was your clearly not disabled as your not in a wheelchair and that they would refuse to give me a ground level accomadation. It didn't matter how many times i tried to explain i struggle to use the stairs. I had to settle to pay the earth for a rented bungalow, that i can't even afford to live in.
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angeldust
25 posts
Apr 08, 2007
5:33 AM
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hi louisa thats what i think but i aint taking no for an answer im gonna stamp my feet like a child in a sweet shop . how far up did you live? the council are not very nice are they.
milya
london
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Louisa
16 posts
Apr 08, 2007
7:26 AM
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Good on you, i wish i had stuck to my guns the hassle of waiting for them to house me especially when i was homeless was too much to bear, but i'm currently reapplying so fingers crossed for us both.
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angeldust
26 posts
Apr 08, 2007
7:46 AM
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you go girl
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angeldust
27 posts
Apr 14, 2007
2:34 PM
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Hi all just to let you know that iv emailed my MP iv been told hes good so il wait and see.
milya
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Sherry
71 posts
Apr 14, 2007
9:38 PM
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Ladies,
It just bugs the stew out of me that yall are having these problems! I am so sorry. I will keep my fingers crossed and yall in my prayers. I agree with Jules - FIGHT! FIGHT! FIGHT! I hope things work out for you both.
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Sherry
"Across the pond" in Alabama
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angeldust
37 posts
Jun 16, 2008
7:52 AM
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Hi hope your all ok? this is just to let you know how i got on with the council. well they said No there isnt any reason i should be moved or have any points to move i have to say i aint happy but i give up this is my life now im gonna have to learn to live with it.
Milya .xx
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Rita
82 posts
Jun 17, 2008
5:34 AM
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Can I suggest that you go and see your GP and ask for your accommodation to be assessed with regard to your MG by an Occupational Therapist. he/she will advise you on any adaptions that might help your day to day life and may even be able to supply them for you. You can also explain the problems about needing to move - make sure that you ask for your blue badge and that you register yourself as disabled. Lots to remember but go for it!
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angeldust
38 posts
Jun 17, 2008
6:59 AM
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hi iv got a blue badge,iv written a an a4 letter about my condition and how it effects me but i feel like they think im lying im sooo stresed out and with the hot weather i feel worse.
milya
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Rita
84 posts
Jun 17, 2008
8:19 AM
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Maybe you would like to email me on Rita.goldthorp@btinternet.com and we can go through this some more. (I will be away until Monday)
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ragdollhippo
12 posts
Jun 17, 2008
12:44 PM
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I had a similar problem with my housing and had an assessment done through social services who sent out an OT who assessed several things and he gave me some very good advise, but also about the unsuitability of my housing and I am now waiting to be rehoused in suitable accommodation. I just rang social services up and explained the problems and went from there. Hope this helps. Sally
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chairman
MGA Chairman
770 posts
Jun 17, 2008
11:00 PM
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Angeldust Some excellent advice has already been posted above. Have you tried talking to your local Citizens' Advice Bureau about the problems with your flat and the council's response? Please keep us informed about your progress - this topic is probably interesting to quite a few myasthenics.
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 Peter Finney
MGA Chairman
Last Edited on 17-Jun-2008 11:16 PM
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angeldust
40 posts
Jun 21, 2008
2:05 AM
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Rita how do you register yourself as disabled?
Last Edited on 21-Jun-2008 2:11 AM
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Rita
86 posts
Jun 23, 2008
12:24 AM
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Ask at your local social services where you obtained the blue badge. There is a box on the form to tick if you wish to register as disabled. They can advise how to proceed if you did not do this at the time. I still think you should ask for an OT to visit and she will help you with all of these problems.
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ragdollhippo
14 posts
Jun 23, 2008
12:55 AM
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Just wanted to let you know. I have had a letter from the council to say they will be doing an in depth assessment on July 16th to determin exactly what type of housing would be appropriate for me. This has mostly been down to the input of the Social Services OT department. so keep your chin up and just keep plugging away at them. It can happen in the end, but it also can take a long time.
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ragdollhippo
15 posts
Aug 08, 2008
12:28 AM
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Just a short follow up to let you know that I was assessed for sheltered housing by my local council last week and have been offered a 1 bedroom flat on the level , which has access to bus’s , shops,etc. So keep trying and do not give up. Just the right kind of housing for me.
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pam2507
98 posts
Aug 08, 2008
4:41 AM
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Thats lovely news, i'm very pleased for you. When will you move???
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chairman
MGA Chairman
836 posts
Aug 08, 2008
9:51 AM
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Sally This is just the kind of story which we like to pass on to other myasthenics. Would you be willing to contribute an article to MGA News on your experiences? By the way - congrats on your efforts and success in this matter.
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Peter Finney
MGA Chairman
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ragdollhippo
16 posts
Aug 09, 2008
1:43 AM
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It was a bit of a shock as we really did not think it would ever happen, but we are in a 3 bedroom house at present moving to a 1 bedroom ground floor flat but the building is only 2 storey and beside that are single bungalows. We do own our own house at present, and have a dead line of 12 months to sell it. So we will be able get the flat sorted as best we can before we have to move in, leave behind anything not needed, and sort the house out last of all so that part worked out well. I am very lucky with a close family who will all help. The flat is very nice, light, airy secluded in a very quiet area and parking nearby, but near the shops, church, bank, library, bus top etc. I am only 59yr young and most of the other residents could give me 20 years plus, but it is a safe environment and should help to improve the quality of my life. Funnily enough, it was the area I was grew up in and the building in on the site of an old farmhouse we used for a youth club in the 60s, so full circle for me. I hope my experience has given you some hope to persevere if you have housing needs, but I learnt one thing it is not housing needs they considered but how vulnerable you are through your illness. Sally
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angeldust
44 posts
Aug 26, 2008
10:40 AM
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im really happy for you i dont think il move iv got a rubish nurologist who tells housing im gonna get better.
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ragdollhippo
17 posts
Aug 27, 2008
1:43 PM
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To answer your question Peter yes I will write an article for the MGA news. As you can imagine a bit busy at the moment and overdoing it too much, but as soon as I am able will put fingers to keys and get one done. I can honestly say it has made a complete difference to my life already with more up sides than down. Thank you for all your good wishes. Sally Angeldust keep trying and don't give up. Its worth the struggle in the end. Lots of Luck. x x
Last Edited on 27-Aug-2008 1:46 PM
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