OPTIONS FOR LIVING ARRANGEMENTS

[John352]

Hello all,

I am quite new to this site – if I ask questions that have been dealt with, or are better addressed to another board, please let me know!

I am a 60-year-old with mild quadriplegic spastic cerebral palsy, living alone. A year ago I could walk 2 miles a day unaided – now I am tired out when I hobble 400 yards with a four-footed stick. This decrease in walking feels like a fast degradation of mobility. I have just had to move and I am looking for possible living arrangements, preferably without moving again in the near future. I live in London, England. Can anyone suggest people (or organizations) who may help me consider the different types of accommodation going forward – or reassure me that often the condition stabilizes (and I can continue to live independently in the private sector)?

Thank you,

John

[Pinky2233]

Sending positive energy your way. Having dealt with a sharp change in mobility recently I share the strength a the few around me have continued to share especially when I am lacking in much. I have been using the words relax, breath, feel in that order to draw any strength or calm however frail on any given day. This forum has been so very positive for me. I thank it and those who also have given to me freely and generously and wanted to share with you. You don't know what tomorrow will bring and it could be better try to not make your mind up and not judge. You are worth it. This sight is wonderful. I send hope to you that you find your answers.

[John352 in reply to Pinky2233]

Thank you, Pinky2233. I use a site to try and meditate each day, and your reply is welcome.

[Sheryl4659]

Hi John, Welcome to the site, I think your best bet is housing associations, I don't know where you live but the housing associations in North Wales have different types of accommodation ranging from independent living to 24hr care where you can have your own flat but have a nurse on site 24hrs and a restaurant where you have meals cooked for you.

There is also the charity Shelter who will point you in the right direction.

Sorry just reread your post and I see you are in London.

Good luck with everything kind regards Sheryl

[John352 in reply to Sheryl4659]

Thank you, Sheryl.

I'd not thought of Shelter, got only as far as the CAB. The first housing association that I had tried had said I was too young - I'll keep trying!

[earthwitch]

I'd start by searching for cerebral palsy support organisations online and see if any of them have a helpline or a local group - you may not have needed this kind of group in the past, but they usually have access to an awful lot of useful information about all aspects of living with a chronic condition. Then, as has already been suggested, housing associations - as they almost always have housing targetted at both over-55's and people with disabilities, including places that are semi-serviced (have some maintenance tasks covered in a service charge). They will also usually be really good at ensuring houses are appropriately adapted for you, whether you need ramps, rails or adapted bathrooms or kitchens. Another thing if you are having increasing difficulty walking (and I have just been through this myself) is to recognise when walking becomes more damaging than not walking. Right now, while you can still walk, even if it is more difficult and painful, might be a really good time to have a full mobility assessment from a physio to see whether you would be better off with a different kind of walking aid, or even something like a power chair or scooter. I was lucky enough to be able to get myself a super lightweight wheelchair well before I was officially assessed as being eligible for one (i.e. while still only needing it infrequently and not on a daily basis), but I am so glad I did now I have had a chance to get used to the idea that sometimes not walking is better for my body than walking. Although not specifically for people with cerebral palsy, you might get some good advice on the incomplete spinal cord injury forum at apparalyzed.com - there has been a really excellent message thread about when to give up walking that deals with all the physical and psychological issues around increasing difficulty with walking.

[John352 in reply to earthwitch]

Thank you, earth witch.

I'll look again at the housing associations, and the suggestion to have a full mobility assessment is helpful. Right now, my thighs and upper legs 'burn' when I stand on them, so it is a help to have advice from someone who can remember recently going through this change. As I'm sure you have encountered, there seems to be little advice or services available for adults.

I am currently renting a one-bedroom flat. Can anyone tell me if there is a legal act or framework that might be of use for adults with chronic conditions?

[earthwitch in reply to John352]

Have a chat with the housing officer at your local council - adaptations can be done on private rented housing as well as on council housing. For other aspects of legal acts, or assistance, it might be worth making an appointment with the disability advisor at your local CAB. Ours was most helpful in making sure I got access to all the concessions and benefits I was entitled to (including any local travel concessions, etc).

[johnsmith]

The four-footed stick is probably what is tiring you out. Walking is efficient when done upright and walking with gravity. Putting weight on the stick will cause your legs to weaken due to spinal reflex functioning.

It is worth getting some postural training so that you can use your muscles better. T'ai chi, yoga and Alexander Technique is of use for this.

The condition will worsen without input from others who can help you regain lost skills and learn new ones.

Hope this helps.

[John352 in reply to johnsmith]

Thank you, johnsmith.

I have tried to send you a private message – please message me if you receive nothing.