Sorry, i feel all I do is ask advice and never contribute anything! At early stages of loss of mobility did you opt for a wheelchair or mobility scooter, we have been loaned a wheelchair from hospice but I seem to be avoiding going out unless completely FLAT and that's not possible!!
Thank you and lots of hugs to you all
Debbie
Hi Debbieann,
We have the same problem, hills everywhere!
I wouldn't advise a scooter though, I don't think Keith would be able to control it, he would be flying off without me!
At the moment I have to drive to somewhere flat and push Keith around in a wheelchair, our occupational therapist is looking into battery packs that you can attach to a wheelchair but you have to pay for them yourself and they are quite expensive, but I suppose in the end it's worth it to be able to just walk up the road without having to take the car!
Hope you find a solution....
Love....Pat xx
hi . I boght a scooter and have never regretted it. It is very much a matter of how much independence you want/need. A wheelchair ..without batteries...most likely means that you need a carer/husband/ wife there to push it particularly so if the terrain is hilly as it is in my case.
Yesterday I got on my scooter and followed a cycle path to Asda some 15/20 minute away. I really enjoyed the trip and came away with 5 bags of shopping 3 of which fitted in the bag attached to the back. All in all a great trip completed on my own. I do accept by the way that this illness hits people in many different ways...the loss of mobility being one. At the moment, I want to assert my independence before PSP becomes so progressive to the point that I can't. xxx
I asked for a battery wheelchair through the OT and got one, free. We live in Sheffield ( built on 7 hills) and I have arthritis in my back and neck. Unfortunately, I had bought a scooter first, which now resides under a cover In the garage. Don't be put off by thinking you have to buy a battery wheelchair. Do ask for one, you have nothing to lose and they are great!
Keith's OT has told us we have to pay for the battery ourselves and we live in Buxton, not far away and very hilly as well!
Can you ask your doctor to help or have you got a social worker or neurogy contact? It does not seem right that you have to pay for an NHS battery chair. We are self funding for our carers, so it is not means tested. You really should have one, especially as you live in Buxton.( Lovely place!) Good luck! X
Thank you, I will check it all out with doctor etc.....xx
Hey, Debbie, don't apologize. We all ask and answer in turn, as the circumstances carry us. I have discovered how much I like going about with him in his wheelchair, so much easier and safer than using a walker. We went to a movie last night, to a lecture on Shakespeare last week and to the sweet old fashioned barbershop, too. The brick sidewalks in the village aren't as bad as I expected, and I've learned to approach curbs backwards. There a flat walk along the river we go to for pleasure. My guy is not slight, and he doesn't really help, but I manage it pretty easily. We drive a Honda CRV, which he gets in and out of well enough, and the chair is easy to stow in the hatch. The wheelchair equals freedom for us. Good luck! Ec
Hi Debbie the scooter is a definite no no. They have trouble judging gaps and distance etc. (Spacial awareness) not a good combination to be let loose on something that is in amongst defenceless people.
I would look at getting a motor for the wheelchair we bought one and it is a godsend. The cheapest in uk is a company called betterlife (part of Lloyds pharmacy). Try looking at there website or go to your local mobility shop. You will have to pay more but they will deliver and fit it for you. And the cost was about £400. So cheaper then a scooter.
It is very quick and easy to fit. Janexx
Hi Debbie.
A mobility scooter depends on how much spacial awareness you have? If you need to go out without someone with you, this might work better for you, I am sure you could loan one to test drive?
There are lighter non mechanical wheelchairs. Initially our NHS gave us a standard wheelchair but it was back-breaking getting it in and out of the car and so we now have a Moonlite Breezy that weighs 17kg
I have found that it gives us a lot more freedom. My hubby cannot manage independently so this is why we have this 'chariot' as we call it.
Good Luck
Hi Debbie, when my husband was first diagnosed and had full mobility, I got him to drive around on my dad's mobility scooter, thinking about the future. It was a disaster. As his eyes had stopped working properly and his neck wasn't as flexible, he could only look straight ahead and failed to avoid obstacles, of which there were many. I opted for a light weight wheelchair which at first he used as a walker, only getting in it if he was tired of walking or if we had to get somewhere fast. I then bought a battery pack but found in our very hilly village, it wasn't powerful enough and ran out quickly. We like looking around gardens and it didn't work on gravel, bark, grass etc. I've had problems with my back and decided to blow a lot of our savings on an electric wheelchair, made to measure. It reclines so if we are out for a long time. C can have a comfortable nap. He can no longer walk and has to be transferred by hoist so if we go to friends, he still has to sit in his chair but is comfortable. I love it as I can move him with one finger!
X
They sound great Bev , I did think about buying a better for the chair we had but John is short so chAir lower , I didn't think it would fit under . Like the recline . Ours was straight back .
John isn't up to going out noI anyway unfortunately .
We were only allowed the transfer chait
Ooh that sounds good! Did you have to get a special vehicle to drive all "three" of you around...or do you have a special contraption affixed to the back of your vehicle to strap the chair on?
Hi abirke, we have a wheelchair adapted vehicle. It's great as the ramp comes down and I just "drive" him in. The first time I did it he nearly came out through the windscreen (OK, I exaggerate) but I'm used to it now. I still have the lightweight one in our hall but it has a screw missing, not a standard size of course so will have to get from manufacturers. One of my jobs to do, then I can give it to someone else to find useful.
Have a good day, if you can.
X
Thanks Bev, and greetings and salutations to you as well....tell me about rare screws. I have a beautiful chair that is fully functional.......to look at .....but during one of his many falls, B ripped the rare screws...more like bolts that attaches the arm to the seat and back of chair....
My mission is to find a furniture repair guy and pay 2x more than I did for the chair!!!
So embarrassing, My daughter in laws father from New York was visiting and he pulled on the chair to sit down in it and it naturally collapsed.......It was not, I thought, in an area easily to get to....I had other seating, why he chose that chair.....oh well
AVB
😆 My brother did the same! I'm going to try the manufacturer on the Internet when I get around to it. Unfortunately it is also missing the foot rests. My fault; when we got a new reclining shower chair/commode, I asked for the old NHS commode to be collected. Weeks later I was trying to mend the wheelchair but didn't have the correct screw so gave up but tried to put the foot rests on. It was a poo poo nana moment at I struggled to get them on and eventually realised they were the wrong feet. It took a while for me to understand where these feet came from and then realised they were the old commode foot rests; I'd sent the wheelchair ones away by mistake. I phoned the equipment store on the off chance but they had no knowledge of them; I'm not surprised.
Silly me!
X
Oh poo poo nanna! I can have something around for YEARS finally buck up and get rid of it only to need or have someone need it soon after!!!!
Funny(?) story: We have a small trimerand (sail boat) . We have had it here in my back yard for 25, no 26 years. Not one child (or husband) has ever desired to sail that thing on the many lakes which grace NW Arkansas! Well the other day I hired the young man who owns a lawn mowing business to mow my lawns....when showing him the ways of my weeds, we both decided that his work would be gladly given in trade for the boat. I told my kids ...Guess What.....someone will take the boat etc
Bev you would think I told them I was about to stretch dad across a holy table offering him up for favors from the gods!!!!!!
"No You Cant get rid of the boat im going to sail it ....we'll clean the yard ...I'll store it at my place..."
to wit I laughed and laughed then proceeded to show them their spoiled ways wanting for nothing and worried about losing that which they care nothing about.......hahahahahaha...They really are good kids but I had to laugh at that one...
AVB
Did you keep it then? Similar has happened here...nothing as big as a boat though. When we cleared the garage out in preparation to turn it into a wet room, we hired a big skip to put the stuff in and be taken away. Our boys and wives told me not to look at what they were throwing out as they thought I'd take it back and as it had been buried under heaps of stuff, I obviously didn't need it. I'd ordered the largest skip and I couldn't believe there was still space so said we may as well start on the loft. Most of the stuff up there belonged to them. Did they throw that out with such enthusiasm? Oh no! Most of it they said they could sell on eBay....have they? No! It's all still there,including a brand new wing of a car which one son said he was going to put on his car......the one that was trashed at least 15 years ago.
Don't you love them though!
X
hahahahahaha...Oh Bev ! Yes I do love them and yes I'll keep the boat...maybe indeed they will sail the thing ...It's in their best interest to sail lest I do sell...on ebay ....or to the man down the street with a working mower!!!!
My kids still have their letterman jackets....don't know what to do with these nice leather jackets with the name "BIRKE" scrolled across the back.......
Even my daughter in law has gotten into the act, hanging her wedding dress in the boys closet.......haahhahah
AVB
😆 X
Guess what NannaB? My daughter actually came and got the boat with her boyfriend!!!! Yahooo!!!
They scrubbed it down; moved it to her place; found a friend who knows what to do with it and soon it will be on a lake where it belongs...yahoo
AVb
Love it !!
There's a lesson there. We really value something when we think we might lose it. We then really see it and its meaning in the family.
Nice for you.
love, Jean x
Joni Mitchell said (sang) it best when describing our earthly Paradise ( namely Hawaii) But it fits here as never really appreciating what we have : "Don't it always seem to go, you never know what you got til it's gone ...they paved Paradise and put up a parking lot....." hahahaha
I do hope my kids enjoy it!
See what's the next thing to get rid of...
AVB
Your occupational therapist should be organising you a wheelchair through National Health Service and they can provide you with a power pack which fits on the back and helps with hills .I bought one originally ,a Roma .£300 We have just been provided with a more supportive chair and it came complete with power pack so try asking your OT.
hello Debie
this obviously depends on your ability if like me you are confident about driving a scooter then get one or hire one for a week. we got ours because the airports were so much trouble we eventually got a Luggie , because it would fit on the plane easily. you have to remove the battery before they put it on the plane this is easy to do and quite light being a lithium battery I use it t to go down to shops because i tend to freeze up in the shop itself, but not with the scooter. I use my bicycle for longer journeys as my driving license was revoked recently.
I couldn't go with the mobility scooter as hubby has a real weakness in his right hand which would mean grip would be difficult. He also shakes in his arms more these days so I believe he would not have safe control of the mobility aid. Also because his grip is suspect he could suddenly spurt off and if going round a corner, end up on the ground. We have a slope from the road outside, through our carpark and to the front door, so we are having a wheelchair but with an added power pack or I wouldn't be able to safely push him in or out. So I understand how you feel. Can your OT not help you, you may need your GP on side and putting pressure on but you should have a good case for qualifying. Good Luck, let us know how it all goes.
Hi Debbieann we tried out a mobility scooter on loan in early stages when M was starting the falls, it was not a success as M could not judge direction and gaps. We got a light weight folding wheelchair from local mobility shop great for trips and easy to manhandle into and out of car but as PSP dug in no longer comfortable and M could upset it as it was so lightweight. Still used it around house until recently for short quick moves.
We then had a NHS supplied Rea Clematis it is heavy chair 25kg M could not upset it but it meant hills were very difficult. If you are in UK and living at home the local NHS wheelchair service can provide you with 2 chairs a manual one and a motorised one. The motorised chair is very heavy 75 kg ours is a Spectra, problem for me is the push rail and controls are too low for me, though a technician is supposed to come and provide adjustments but promised before Christmas still no help. We tend to use the Clematis for all trips.
I found having a chair with large rear wheels better than equal sized wheels as it is easier to get the chair over curbs, rough ground and grass as it is easier to tip backwards in a controlled manner but I had to make sure M kept her feet on the paddles as if she put feet on floor she could tip chair.
Both chairs require an adapted car preferably one with a ramp if you are going to use them for trips.
My thought is if he can use a mobility scooter hire one or get it on loan do not buy as PSP will rob the patient of ability to use it fairly quickly. Try a lightweight chair from a mobility shop as NHS wheelchair service is very slow and stretched but keep on to them through your GP or OT as you will require a substantial chair as the PSP progresses.
Best wishes Tim
I found my husband studying scooters in a catalogue one day and was horrified. He can't drive a car any more and the thought of him trying to manoever a scooter around town - horrors! He would be taking out pedestrians and swerving into the street and under cars. When I explained this he said he would only use it inside!!! Oh my poor home....
EC, what kind of wheelchair do you have? I think we are getting to the point where we should have one ready.
Thanks! Finoni
hi
must agree cognition means truck no good! your ot should provide a wheelchair after referral from your gp, be aware some will only give for use around the house so be cute and say of course he needs it around the house!
julie x
My husband was only able to use his scooter for a year before his eyes closed to much to be safe.
Hi Debbie, like everything else, working with a wheelchair is a huge learning curve. Yes, I am afraid, it is only flat places you can go, but that shouldn't stop you going out. Malls are great, flat, warm and dry. Coffee and Loos always available. Same with garden centers. Might sound boring, but YOU have to build up your muscles first, then you will be surprised what you can manage
So put your 'L' plates on and get out there and enjoy life, without having to worry about F falling!!!
Lots of love
Heady
I am afraid that whatever you buy you must be prepared for the fact that it will not be very long before the PSP sufferer, despite what they may think ( bearing in mind that one of the features of PSP is motor recklessness), will actually be completely unable to drive it safely themselves due to factors like spacial awareness, reduced upgaze and downgaze, the inability to track moving objects etc.I presume it is for this reason that I think I have read somewhere that it is a legal requirement to notify DVLA when diagnosed. So for us that certainly ruled out a scooter as attendant control ONLY was absolutely essential. Even at the early stages of the illness, in fact before my wife was diagnosed episodes of loss of balance, fall s and loss of spacial awareness came on suddenly and without any warning. Looking back,for her to have been in charge of any sort of vehicle on the streets would have been unthinkable.
We used a manual transit wheelchair( In fact 3 as they did break fairly easily) but it was too difficult in hilly areas or very uneven ground so we then bought a small attendant controlled electric wheelchair (rascal we go 250) big mistake as it had no suspension, a small seat and no headrest and eventualy my wife didn't feel safe in it.Also neck position and pain made a headrest essential especially when travelling in the wheelchair in the car.
Then we did the sensible thing. Our physio referred us to Glos County Council Wheelchair services. They came to the house with a very expensive electric wheelchair with suspension that did everything. It was a Invacare Spectra XTR2. Their role in life is to improve mobility in the home and if my wife could have driven it safely round the house they would have supplied it with an attendant control for outside. Unfortunately by the time we involved them my wife could not pass the test of driving it indoors and that meant they were unable to supply an electric wheelchair for safety reasons. The did however supply free a really good manual with "tilt and space facility etc"(Invacare rea azalea) and for the hills I have added a TGA electric power pack which cost me about £900 fully fitted by an expert engineer. It is not as good as the full electric wheel chair as it has no suspension but it is a really good wheel chair. These wheelchairs are fully adjustable so you do need an expert to set it up for the person who will use it.
I seem to have waffled on far too long but I have spent a lot of money on wheelchairs which would have been saved if I had gone to the right place at the start. So my advice is don't do it yourself go to your local council wheelchair services and ask them for a chair that has the facilities that will be needed as the disease progresses. eg tilt and space, adjustable headrest, upper body support pads etc. If you go early enough and the person with PSP can drive it safely in doors they may even give you a top class electric if you undertake to only use attendant control when outside.These people really do know what they are doing and they can save you a lot of heartache.
My husband only has one leg so mobility is difficult. At the start of all this he got a Luggie scooter which worked very well inside and outside the house . As his eyesight got worse the walls have suffered. Now he has a battery powered wheelchair which is a bit easier on the walls . It is getting harder and harder to transfer from the lounge chair to the wheelchair but we manage. If we go out together we take the Luggies as we can get it in and out of the car,although because of his eyesight I walk beside him all the time as he will run into things and people.
Hi Debbie,
The second wheelchair that my husband needed as his condition progressed, was larger, more supportive and a much heavier wheelchair, so much so, that when I brought it home, I just could not push it up the slope at the front of my house.
Luckily for us, my son stepped in and bought a battery pack for the back of the wheelchair and now we can go anywhere. I would thoroughly recommend buying a battery pack and you will never have to worry about taking your husband out anywhere in a wheelchair.
DenB X
Debbieann
I thought my guy should have a scooter but as I see PSP progressing, NO WAY! I usually let him drive a scooter with a basket from the grocery store. He use to be a great driver and the last few times, ohhhhhhh goshhhh, it has been awful! He runs into things, people, mannequins, display stations, everything and he doesn't care what he knocks over or if he bumps someone, he doesn't even apologize. He is out of control! I told him we weren't getting one of those ever again and he was either going to have to do a wheelchair, stay in the car or at home. It was awful. By the end of that shopping trip, I was a complete basket case and felt like I had a workout! I was constantly apologizing for him through the entire store. No spacial awareness!! Maybe a scooter is not a good idea for a store setting/shopping, but might be good for an open area where there is nothing blocking his path. NOTHING! I wanted one for taking a stroll outside so he gets out and gets some sunshine. We will see.
Good luck,
Nikkie
I haven't read all the posts, Debbiann but I do know that B would be dangerous to himself and others on a motorized vehicle (that's why he gave up driving and his motor bike scooter thing). I use a service wheel chair that does not have high sidewheels...I have to push him everywhere.....up and down! I had a seizure the other day and had to walk him down a steep ramp (going up it prior to the seizure I knew there was no way I was going to walk down it with Bruce! still don't know how I did it ) inside a gift shop! I don't know how, but I did it Debbieann and if you get a powerpac on your wheel chair.....you'll be able to too!!
PS that wheelchair ramp had a 24" rise (it had 3 steps next to it) and a 4' ramp....thats off by 20' or 6 meters! Wonder which government regulation agency would have to say about that! Oh and while that agency is at it...try and wheel yourself or another into the "wheelchair accessible bathrooms" here in America!!!!! I do not believe ADA's (Americans with Disabilities Act) motto is "if you can't use it, you don't need it!" I should've had B do what he does on my floor! Course he couldn't pee during our trip....so that was a plus for the people who put a picture on the bathroom door, "wheelchair accessible"!
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