I posted a while ago re whether we convert my parents’ house into having a downstairs bedroom and shower room for my mum, who has CBD. Thank you so much for the helpful responses.
I’m thinking ahead to what other adaptations might be needed, in order to enable wheelchair access in and out of all areas of the house - and when we should be doing this. It might make sense to do this along with the other work? She is frail, but still able to walk - will she be able to move between rooms, with support, or is a wheelchair inevitable, eventually? I know every case is different but is there a common outcome re mobility?
There seems to be a lot more posts on this very helpful site on PSP rather than CBD, and although I understand they are similar, I’m not sure if they are always the same in certain areas.
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My husband had CBD. Before his diagnosis he started to become much less mobile. We arranged for our (upstairs) bathroom to be refitted to remove the bath and replace it with a walk in shower. This cost a lot of money and was done in Sept 2022. CBD was diagnosed in Dec 2022. By February 2023 my husband was no longer able to get upstairs . We thought a stair lift would be the answer - fortunately we found out before we paid out to have it fitted that it would not be suitable (even though the suppliers would happily have sold it to us). My husband now lives downstairs and does not have access to a shower. I so wish we had left the upstairs bathroom as it was and organised a wet room downstairs instead. I could not now face the prospect of having that done while looking after my husband who has deteriorated and is wheelchair bound.
Hi although PSP and CBD are slightly different, the majority of symptoms suffers overlap. In terms of mobility I think they are similar. So my husband has PSP in advanced stages.
We only use a wheelchair if we are intending to leave the house. We only leave for hospital appointments and the wheelchair loads onto the ambulance. We don’t use it inside. My husband has his hospital bed in the lounge and also has a recliner chair a few feet away in the lounge. We use a Sara steady to transfer between the two. The Sara steady is an excellent piece of kit but cannot fit through door ways so depending on circumstances I can either walk him taking his weight to the toilet (downstairs a few feet from his bed) as he cannot walk or stand without support. My husband weighs about 60kgm so so I’m bigger than him or when his legs are too jelly like I swivel him onto a commode next to his bed. The commode is on wheels.
I have noticed transfer using me as a support is getting much harder and yesterday I lost support and he fell so will be using the Sara steady every time from now on.
The recliner chair has an inflatable seat and reclines so is comfortable. The wheelchair we have is not comfortable and doesn’t support him if he leans over to one side.
I don’t know if all sufferers end up in a wheelchair, but it is quite likely that your mother might, so it makes sense to do all the works together. I mentioned in reply to your first post that we involved the council. They worked with the OT to design a bedroom and wet room in the garage, they will also replace the patio doors from kitchen to conservatory, and conservatory to garden for wheelchair friendly ones. Finally they will put in a ramp out side the conservatory to overcome the step (about 8 inches). The new bedroom will have a wider front door, as the existing one doesn’t meet their standards for disabled access. The plans are now complete and the work is out to tender. It is being funded by a ‘Discretionary Adaptations Grant, DAG’, which puts a charge on the property which is paid back when it is sold. Unfortunately these types of grant are individual to each council; have you contacted your’s to see if they have anything similar?
Agree with the others that the long term outcomes of PSP and CBD are very similar, especially in terms of mobility. Being "wheelchair bound" may not be inevitable but most / all will have bad days or periods where mobility is low, when stairs and steps are too much of an obstacle or when they do not have the strength and stamina (and balance) to walk from one room to another, even with support.In my husbands case, we decided soon after diagnosis that we would move to a bungalow, and made sure the access was adaptable - front door step just 6 inches, where we could put a standard sized rubber ramp. Inside we looked at hallways and doorways and the "flow" of the space just in case. This meant we could cope (-ish) when he had a serious fall and broke his heel bone, and he could access the whole house with a walking frame or a wheelchair.
Even so, over time we've had to make adaptations such as converting the cloakroom/shower room to a wet room - a walk-in bath is no longer safe. We expect to change the wet room door to a sliding door to gain an inch of space in the doorway and avoid the door getting in the way.
It is worth planning ahead, as sun-flowerwearer mentioned, things can change almost overnight - or between day and night. Prepare for the hardest days and hope they are few and far between.
Mobility lasts longer when used, so essential to sit/stand and walk with the least amount of support/equipment when possible - "Use it or lose it" - but it's easier to put this into practice when the caregiver - and the loved one - is not constantly on edge fearing the next transfer or the next trip () to the toilet. So having wheelchair and other aids available can avoid things getting overwhelming.
in the last few days we've had the Sara Steady and the Rotunda patient turner that makes hard days easier again. Equipment takes a lot of space so that's another thing to consider - as the profiling bed has arrived, we have to rearrange the furniture and get rid of some larger items.
I wish you the best and hope your parents have many good days and that their home can continue to work for them.
I would get in touch with the Social work and see how they can help. Karol slept downstairs since July 2023 he had a hospital bed. We had downstairs wet room fitted in January to which they funded 87%of the cost. Sadly he only got to use a few times before he passed away. 💜💔
One of the main differences between CBD and PSP is that CBD has a much bigger element of muscle problems. Mum had CBD so like you I particularly looked for those on here with experience of CBD. Mum stopped being able to walk fairly early on, partly because the lack of movement in her right arm meant she couldn't hold on to any walker, but also her control of her legs went. She got to the stage later on where an ordinary wheelchair was too uncomfortable because of her dystonia in her trunk. She had to use a wheeled reclining armchair. I eventually managed to buy a full blown electric reclining attendant assisted wheelchair that works inside and outside, when she got CHC awarded and didn't have to pay nursing home fees. But sadly it was too late and she only used it briefly before she passed. I am still trying to sell it if anyone is interested.
Details of the wheelchair are on Gumtree gumtree.com/p/mobility-disa.... If you quote your username from this forum I will accept a lower offer and can work something about transport to you if you are not able to organise.
My husband’s wheelchair is provided by the NHS wheelchair service - prescribed specially for him. It reclines and tilts and has special padding to prevent pressure sores. It has also had a side support supplied as is losing control of his left side and this helps to keep him upright (which in turn is good for his chest/breathing) He has used it daily since February 2023 and finds it extremely comfortable. As it gets such heavy use bits have been damaged - repairs are done free of charge and if I can get the chair or the part to the workshop they will often be able to fix or replace it while I wait - which is brilliant as he relies on it so much. It is not motorised but the NHS allows users to have a motor fitted which we did. I would ask locally if your health authority has a wheelchair service and how you can access it
I think that using a wheelchair or a plastic chair to wash in the shower is inevitable sooner or later in this type of illness.
In our case, a door width of 70 cm. they were suitable for both the wheelchair and the shower chair that we used, but that depends on the dimensions of the chairs to be purchased, of course.
Hi There, my mum has CBD and I have listed below what changes had to be made to accommodate mums situation. These are things that are needed and we couldn't do without. I have put OT against the equipment that is on loan via occupational therapy.
1). As soon as the diagnosis came my parents moved down south to be close to me and friends (they originally lived down south) and moved into a bungalow with a layout to accommodate equipment - wide door frames are important. A wide entrance into the home and patio doors to enable garden access in the summer. It was a huge emotional upheaval for my parents (not to be underestimated) but with hindsight was the best thing to have done.
2). Electric profiling bed with air mattress (OT). Luckily this can fit in the bedroom along with the main bed so my parents can stay together at night.
3). A mobile hoist (OT). A ceiling system would be better but not within our cost reach.
4). A specially fit wheelchair, a ‘normal’ wheelchair just does not work as mum cannot bend and is rigid (OT). This has been invaluable but took 8 months to be built and delivered.
4). A special reclining armchair with footrest (plastic covering) and wheels which was bought 2nd hand on eBay as expensive. The hospice had one during a respite stay and we realised how good it was.
5) A small special mobility vehicle with a ramp to accommodate mum in the wheelchair. Dad got a 2nd hand Citroen belingo. This is invaluable for hospital/doc appointments and much needed trips out to keep life as ‘normal’ as possible.
6) Again, with hindsight we are glad we did not spend a lot of money on converting the bathroom into a wet room as that would be redundant now. Mum cannot use a shower chair (reclining or not) as her rigidity means she cannot stay in it. We have come across a shower trolley which we are seriously considering buying as mum has massively missed the ability to have a proper shower/bath. It is a big bit of equipment and expensive but under consideration. You need a decent bathroom space to accommodate it so not sure it could work, something we are working through now. Mum has double incontinence so this is important to her/us as has had bed baths for the past 2 years. Nothing beats a proper shower/bath experience.
We spent a lot of money in the early stages on bits and bobs as mum declined but much did not have a use for very long as the disease progressed. Things that were still needed at the time such as toilet seat raisers, handrails in the house etc but all short lived.
I hope this helps, hindsight is a great thing, my best advice is to plan in advance so everything is in place and ready for when it is needed even if not needed now.
We converted the garage for my mum to come to live with us, all doorways were made wide enough for wheelchair access at that point.
Mum is still sort of mobile, she can walk but since having a fall and being in hospital her balance has really deteriorated. We used a sally steady when she first came out- she now walks with us supporting her- walking aids don’t work for her.
I would make things as accessible as early as possible. Mum just uses her wheelchair when we go out for day or appointments but for getting her out quickly after a fall or during convalescence, wide doorways were a god send.
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