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Preparing for later life with Parkinsons

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Jenska
Preparing for later life with Parkinsons
Jenska

Hi everyone,although I have been reading and appreciating the help of the forum for a long time this is my first post. I wrote at length about this topic and then forgot to save it!  Here we go again.

My husband was diagnosed with PD ten years ago. He is now on a high dose of levdopa. His mobility is poor after hospitalisation for a fall that broke his thigh bone but as yet we only uses a wheelchair for outside long trips. We are planning for the future, converting our garage into a wheelchair accessible  bedsit and wet room so we can continue to care for him at home.

I am hoping to have ideas /comments from you to perhaps avoid mistakes in the final planning. Simple but obvious things like heights of electric switches, lighting, storage, doors, hoists? We are waiting for an appointment for advice from an occupational therapist, but I would appreciate any first hand experiences from you the users or carers

As an ex Citizen Advice worker I am aware of grants etc. It is the practical side of things that we need help with. Looking forward to reading about your first hand experiences.

 

benji

Our  OT gave us details of firms in our area that specialise in wet rooms. I'm sure that an OT can provided details of builders who are can also provide specialist conversions.

Jenska

Thank you for your reply Benji. We have tried to get an appointment wth our local OT. Problem is we are not seeking help with an assessment now, we are thinking hopefully of a few years hence and the extra facilities that will be needed then. I think we are at the bottom of their list, and I know they are short of staff.

Aviator

Hi Jenska

We are in the process of re-designing the bathroom of a bungalow we have recently purchased. I have been diagnosed for 3 years, am still quite mobile, but like you we are trying to "future proof" the design of the bathroom and other areas.

We have tried through our PD Nurse and Social Services, but have not been able to have an Occupational Therapist visit. This seems to be because we are not at "crisis" point yet with my mobility. This seems short-sighted of them! We have been quoted £450 for a private OT which seems too expensive, given it will be difficult to predict exactly what mobility problems I may end up with. We have been told we can reclaim the 20% VAT on the installation and parts but not sure exactly how this works. We plan to have a shower only (no bath tub). Tips we have received include making sure there are plenty of sturdy grab rails, a shower seat, and access to the shower area with minimum "step up".

Good luck and let us know how you get on! 

Jenska

Hello Aviator, 

My biggest tip for you is to really think of all possibilities even at this stage. John had few mobility problems but then fell on our drive and broke his thigh bone. Hospital seemed to traumatise him and for  various reasons his mobility changed totally, and his self confidence. Our new en suite with easy enter space, no doors, lots of handholds had just been completed. But my husband doesn't like using it because the space is necessarily long and thin and I can't get to help him. The open wet room is much more suitable we had one in our small holiday accommodation . He could use a Zimmer to just walk in. (Always get a quote from your local plumber rather than the well known adverts online!)

your quote for £450 from an OT does sound excesssive. We have a quote for £75 to look at our plans and discuss future possibilities. We used the professional OTs web site to find one that lived nearby and mentioned Parkinson's in her Writeup .

i have been doing lots of research on line since I started this thread. The disability living foundation has a website that has fact sheets for everything. Including how to claim VAT exemption. Well recommended.

Best wishes with your plans.

 

Island Mike

Hi folks

I have personal experience of house alterations, but I live in Scotland which is very different to England. 

Before I developed PD I had suffered from a motor neuropathy which severely restricted walking distance and because of reduction in thigh power, stairs were a real problem. When I was discharged from hospital after a string of tests and investigations, the local OT called round and decided that I needed a stairlift and a converted bathroom to create a wet room with grab rails and folding shower seat - for when I got worse. 

She then contacted Argyll Care and Repair. This is a council funded organisation who arrange contractors and grants. Anyone can apply for a grant covering 80% of the cost. This is not means tested. On low income, 100% grants are available.

Thus, a £5000 stairlift cost £1250, a £6000 bathroom £1500. 

The council pays this because it is cheaper to keep folk in their own homes than in care homes. Any further adaptations will be funded similarly. 

Furthermore, if you convert a room to make a special bathroom, you get a reduction in council tax by one grade. 

So although PD has considerably worsened my mobility, everything is already in place to allow me to carry on at home. 

This, I'm afraid, is the difference between a government that is committed to the welfare of disabled folk, and one that isn't. 

(I should add, a straight stairlift is about half the price I paid, our stairs have a half landing and double back.)

benji

That's  good going Jenska, just 3 weeks  for installing a new en suite with all that is needed. Well done.

After 20 years with P we are now having to consider a wet room.

gus
  1. had my wetroom and stairlift couple months now would say make you shower big enough for two ie career and yourself 
Jenska

Oh Gus I am so sorry I missed your reply until now. I am always appreciative when people take the trouble to reply.

Thank you for your comment. I will definitely keep it in mind. The plan is to have the shower completely open. Definitely no curtain or barriers. plenty of grabrails and room for a wheelchair when necessary.

But we are still waiting for the builders to start!

Island Mike

Most disability adapted showers do have a barrier, a half height folding surround for the shower. It’s vital for me, because it acts as a further grab handle in what would otherwise be empty space. It’s a standard fitting. There is still room for a wheelchair.  The most important fitting is a completely non slip fitted floor. It’s expensive, but vital.