I’m a 43 year old working mum of two and was diagnosed with yopd 3 years ago. My main symptoms are fairly mild at present but I’m aware this is a progressive disease. In view of this I’m thinking of moving home whilst fit and able to my forever home. What I’m looking for is advice on suitability … am I likely to struggle with stairs ? Should I get a bungalow ? Anything else I need to consider ? Thanks
This is an interesting question and one I have been struggling with myself. When I first started exploring the topic, I was advised to move to an adapted home so that I could prepare for a life of disability and while I don’t wish to ignore the reality of my situation, it was a conversation that ignored me as a person and ignored my likes and wishes and desires and interests and reduced me to little more than somebody diagnosed with Parkinson’s.
This left me feeling incredibly down for some time until a very wise friend advised me to come at it from a completely different angle and dare to dream about what sort of home I would Iike - what things about where I live are important to me and inspire me and then work from there in terms of what was possible and practical. This is an approach that works for me and has enabled me to find an interest in and enthusiasm for the future that my initial conversation stole.
Maybe I can be accused of living with a degree of denial but I have come to the conclusion that finding my forever home is neither desirable nor possible. Of course we all have to live the life we have in the best way possible given our individual circumstances and resources so I am in no way advising anybody else, these are just my own thoughts about my own life.
Your situation as a working Mum of two will most definitely be shaping the decisions you make as you are making decisions for both yourself and your children. My situation is that I live alone with Parkinson’s and although it is an unpopular concept in an age of declining health and social care services, none of my friends or family members are going to pick up the role of caring for me if disease progression gets to the point where this is required and even if they offered, I would not want them to take on this role. I don’t wish for my friends and family to become involved in my medical care; I believe that I have the same right to confidentiality and privacy in terms of medical care as everybody else and I shouldn’t lose this while I remain able to make my own decisions just because I have a condition that society can’t afford. Tech will inevitably play a part in future healthcare whether I like it or not but until companies and other connected organisations take an interest in developing technology that I can actually afford and use easily and independently, it is a strategy that I believe will further disenfranchise, isolate and disempower me in so many ways - but that is something to get on my high horse about another time .
This leaves me thinking that should I get to a certain stage of the condition, I will probably struggle to cope on my own and I will need a different sort of environment - if such environments exist by this stage and if not, well who knows but I am not going to camp out in a future that I have little control over.
I’m now in the process of moving and am looking for a home that will make me happy now and for the foreseeable future because that is what I have. I’m taking reasonable precautions when thinking about the need to be able to make adaptations to a certain point and have received some great advice on what sort of adaptations I can easily make myself. I aim to keep myself as active as possible in order that I can live as independently as possible for as long as possible and at the point of I cannot do this, it will be time for a change. If I have the capacity I will work out what changes are needed at that point in time and if I lack the capacity to make my own decisions then the situation will be out of my control anyway and I can’t live my life for this eventuality.
Just my own thoughts based on the situation that I find myself in as I have said. Your situation is different and I wish you well in your search for a new home. I think it is a really interesting question and would be interested to know what you ultimately decide to do. Jx
@Madwife5676 , a question a struggled with for a few years. About 4 years ago we started making adaptations to the family home we had lived in for 14 years. The only issue we hadn’t fully thought through was the issue of stairs. At the time it didn’t seem to be of great concern and we both shrugged it off with if and when we will look into a stair lift or a proper lift.
Towards the end 2019 it had become apparent that stairs were becoming an issue so we looked at various options of adapting, but also looked at bungalows as an option. Bungalows on a pros and cons for us was the clear answer. However that raised another issue of did we stay living in Downham Market (Norfolk), near to my elderly parents, or should whilst I was still able should we move to bungalow in Lincoln to be nearer to our grown up children and their partners.
My PD declined quickly and at the beginning of this year (2021), I started to work reduced hours, but it became apparent quickly that this was not helping me with mr parky. I am lucky that my employer had an ill health retirement option so I applied and we also started to look for bungalows in and around Lincoln as we would be able to move, be mortgage free and my wife would be able to work reduced hours / days.
In September everything seem to happen at once, I was granted ill health retirement, we put our house on sale and found a bungalow in Lincoln… I retired on 10th September, sold our house on the 27th and had an offer excepted on a bungalow on the 29th. Will moving in to a bungalow be the right decision? Only time will tell, though I am sure it will be as stairs have become a nightmare and since July on an average basis I sleep on the settee as I am physically unable to get him the stairs.
From my own journey and struggle in my head of do we move now or wait until I am struggling with stairs? With hindsight we know we should have made the decision sooner. But hindsight is always a bit of a pain.
If we had our time again to make the decision we would have made the choice to go for a bungalow in 2017 / 18 instead of starting the modifications on our home. But perhaps if we had we would not have chosen to move to Lincoln who knows. If you can I would say go for it now whilst you can. I wish you all the best in what ever decision you make. Best wishes John
A bungalow is an obvious choice. With not too large and preferably flat garden. You may have to add handles at doors later, if things get difficult. A wet room could be considered, at a later date.
You may need a ramp at external doors, so look for reasonably flat access.
Thanks for the tips all very hrlpful, wet room will be first addition as I have one already and they are so helpful.
The one we have bought (just waiting on solicitors to agree exchange and completion dates) I can enter the bungalow through the side and two rear doors, front door will need some work and a ramp building but there is enough room to build a ramp. However there would still be the issue with the door frame as it has a raised bottom section and I think it will be to narrow. But not a rush as I have 3 others to choose from.
Internally the door into bedroom 2 is to narrow for my wheel chair and also the door to the separate shower room (was bedroom 3) is not the easiest but that will get change to a sliding door when we have the wet room.
I can’t remover how flat the garden is but I sure we will sort but again not an urgent job for now. Again thanks for the tips. The handles is certainly one we will have to address as they are round ones which I know I can’t do with ease.
Hi jps 1926.
Glad I was able to help. There are so many little things, that you don’t think of until you need them.
You have quite a lot do do, to improve it.
We moved from a four bed shalet bungalow, to a three bed bungalow in 2014. my wife has MS, and found stairs were getting more difficult. I was in my mid 70’s, and did not have parkinsons then, but found the garden was too big to manage. I found the move very tireing.
I hope you get settled soon, as moving house is a bit stressful.
If I might add my tuppence worth to all the helpful comments already made and I use bullet p oints simply for ease and clarity. In no particular order
it’s stating the obvious but it is difficult to be prescriptive with Parkinson’s because it is so individual but I would agree a wet room is the best long term solution. Please make sure you get someone who knows what they are doing or you can end up with never ending problems.
I would agree that a bungalow is the obvious solution, single floor etc but you mention you have two boys and it may be difficult to find one that suits you all. I just wanted to make sure you knew you can get through floor lifts that could give you access to the upper floor if stairs become untenable or perhaps look for a house with 2 reception rooms so you could live downstairs with the addition of a ground floor bathroom. Indeed you may be able to do this at your current property and not have to move at all. You can apply for a Disabled Facilities Grant to help with cost - it is means tested and needs a social services assessment.
As has already been mentioned door widths are important not only in the event you may need a wheelchair but any kind of walking aid, trolley for carrying items etc change overall body dimensions. A useful tip is to rent or borrow a wheelchair and try it out when you view. You may feel stupid but you will get a real feel for the reality of the property including thresholds. Doors can often be widened but equally space can often be gained by rehanging the door on the opposite side or having it open outwards.
This is something I have done and it’s made a huge difference to me and that is had my bathroom basin and kitchen worktops set a couple of inches higher than standard as standard was a bit low and I found I was stooping and generally uncomfortable. This is unusual and people kept asking if I was sure but that little extra height does help me and I include it here for that reason only.
Away from the actual property be aware of how you arrange things especially in the kitchen as small things can save a bit of energy and cumulatively these little bits add up and can make an overall difference. For eg keeping items frequently used on the worktop, I use a two tier dish dryer to store plates and bowls because it’s easier than managing a pile in a cupboard, I have a small narrow trolley on which I keep condiments, herbs etc which I wheel to the hob, table or worktop depending where I’m working. You get the idea. The aim is to simplify tasks as much as possible to conserve energy.
Hope this is useful info… Good luck with whatever you eventually decide to do.
Things happened for me in the reverse as I was diagnosed a few months after moving house. We had been in our home for 27 years when we decided that it was time to move to something smaller as the kids had left home, my husband was retired and so no more entertaining etc. House went on the market and a buyer was found quicker than expected but happily for us was willing to wait until we found something.
The first house we found was just what we were looking for - quirky, lots of character, a bit of history, in the country and on several different levels. On nearing completion the sellers changed their mind and so it was back to the drawing board. A couple of days later we heard that another property down the same lane was being put on the market and so of we went to view. A converted stable block and carriage shed which was in a poor condition but was something we could put our own mark on and ahead with the purchase we went.
To cut a long story short we did all the renovations and duly moved into our SINGLE STOREY home which was all on one level only to then be diagnosed with the ‘old Parky’. I felt that someone was really looking out for me as the first house would have been completely unsuitable and we would have been on the move again.
My advice is simple - don’t be in a hurry but also don’t leave the move until it is a chore and difficult for you, make sure of what you think you want / need, what your children’s needs are and take the advice of your Parkinsons Nurse (if you have one).
I wish you luck x
I would move sooner rather than later. The stairs aren’t really a problem, there are stairlifts available,
but I would recommend a bungalow as it’s not a case of getting up or down, it’s the very real danger
of falling down.
Hello All can I just make a comment on the bungalow being best option. Whilst I would not disagree in principle for the obvious reasons, it is important that individual circumstances are taken into account when considering property needs. For Madwife5676 she also has to consider her two boys. It could be her current property is more adaptable than she knew, which is why I mentioned through floor lifts - not a stair lift which can be awkward to transfer to and from - the 2 reception rooms option and so on. in addition bungalows are not always the best option, quite often turning circles - the space needed to move around with walking aid, trolley or wheelchair can be tight with limited option to rehang doors etc. Kitchens and bathrooms need careful consideration in any property. The comment about not rushing a decision is wise in my opinion but equally that decision needs to be made in consideration of all options that best suits individual requirements. Like all Parkinson’s related concerns it’s all very individual with no definitive answers. A bungalow may well prove to be the best option in this case, but that does not mean an assumption can be made. There are alternatives but if you don’t know that, a better solution for someone’s individual circumstances may be lost.
Hello @Tot, totally agree with you all solutions should be considered as one size does not fit all. I add it would be sensible to involve those in your care team so they can make sure that you can access the best advice and importantly grants or VAT excemption.
If like we have decided, a move to a bungalow, not only for mr parky, but also spinal conditions and importantly to be closer to our grown up children and their partners, is the best option. Then just like possible current home adaptions you need to go prepared on your viewings.
A few tips;
- If you already require a rollator or use a wheelchair part time take it with you but also make estate agents aware. All but 1 out of 7 we contacted, made sure vendors were aware and Estate agents made provision for ramps to be available.
- Just like we would always ask if the vendors would like us to remove our shoes before viewing, make sure that you have something with you to clean the wheels of the rollator or chair. In my case, I did what I do at home anyway, and I swoped my outdoor wheels on my chair for my indoor wheels. If you are having a good day and don’t require the aid still take it in on the viewing as otherwise you can’t always be sure or in my case rely on my memory.
- Regardless if wheeled aids are required for you to manage now, take a tape measure to check turning circles and awkward corners as it may well benefit you in the future. There are plenty of very useful guides on the internet.
- Measure doorways and corridors / path of travel through the house. Ideally corridors should have a clear width of not less than 30 inches but wider is better particularly at turnings. The most common width of standard doors in the UK are between 24 - 36 inches but remember the actual opening is smaller once the door is hung. The minimum opening required for a wheelchair is measured from the face of the door when opened to the opposite stop in the door frame is 32 inches ideally door openings should be at least 36 inches.
- The bathroom or as in our case the room we are converting in to a wet room, the measurements are outlined in Building regs Document M - the room should be 2500mm (8ft 2) x 2400mm (7ft 9) minimum with door opening being a minimum of 900mm (3ft). There are dimensions for turning circles as well. All can be found in Building regs.
- Don’t forget you need to live in your home and you will have your furniture and fittings to think about as well and where an how they will fit.
Kitchens far to say most kitchens if you need to be either permanently or semi - permanent wheelchair users will need adaptions or even starting again. Kitchens are also in Building regs.
At the end of the day staying put or moving both will end up costing money so don’t forget to take in what matters to you now and in the future - access to family & friends, transport links, medical facilities etc.
To those like me who are moving good luck with your move when it does happen
Excellent advice jps1926. However between us we may have left Madwife5676 completely overwhelmed so to her and anyone else, you may like to think about requesting a social services assessment. An occupational therapist would be able to advise on how adaptable or otherwise your current property is and give you information on options so there would at least be some clarity on that. In some areas it used to be the case, I don’t know if this still happens, where a person was seriously looking to move the OT could hold the case and view any property where an offer was being considered to offer a view on suitability.
The other thing to add is timing. Whilst in the main sooner rather than later is generally good advice, again it depends on individual circumstances. If for eg, children are of an age where they could be moving out within a year or two, this could radically change what you need and may affect your decisions. I realise that all the comments taken together may have left you feeling that you wish you had never asked the question. Fact is moving is known to be a major source of stress for anyone. Throw Parkinson’s into the pot with no way of knowing how the future is going to be makes it even more complex. One way to begin to see the wood for the trees is to take a piece of paper and a pen and put it somewhere accessible. Every time you think of anything and I mean anything - location, children’s education, what if have to stop driving - proximity to shops, social life - jot it down randomly on the paper. After a week or two have a look at it, and draw lines between those words or phrases that seem to be connected. It’s called a mind map and can help you see more clearly what the most important elements are to you. Finally, try not to get overwhelmed. Go one step at a time and if the decision making and process end up taking a year even more, in the scheme of things as you are holding up well Madwife5676 that would be time well spent.
I do hope between us we have helped and not confused!
This all made very interesting reading. I sometimes think that we should have moved a few years ago when my husband was first diagnosed with Parkinsons however we didn’t and as I was diagnosed with MG a couple of years later we are not fit enough to cope with a move now. However my husband is still managing the stairs with the help of an extra handrail but I had a stairlift added for me. Our doors are wide enough for a wheelchair and the rolator that my husband uses outdoors and we have had hand grips added in various places, bathroom, shower room and by various doors. When we had the kitchen refitted we had as many drawers included as possible and the space around the island had to be wide enough for a wheelchair by law. We have lived in this house for over 40 years and it suits us especially as we still have one of our sons living with us. We have a home help.
Idk if you need this, but in case you’re looking for a moving company, you can check out City to city movers services. I hope it’ll be helpful.
Thanks everyone for your tips. We still looking but sold our house about 6 weeks ago and need to be out mid Jan ! I’m looking preferably for bungalow but struggling to find one in our budget so also considering houses that I can adapt downstairs room too if needed. Finding it hard searching whilst considering all the ‘what if’s’ - too to be honest I lm starting to feel a bit cheated having to sacrifice what I want now in case I need something else in future !