Difficulty walking in the house

[panniertank]

As stated in my other posts my balance and strength of my right leg are worsening. I have little confidence to walk outdoors with a 4 wheel walking frame on anything other than simple level surfaces. I also don't understand why my walking is so variable. I have been stuck in the house all day today, as ever. So I haven't done much walking but , as happens everyday, it considerably worsens in the evening and I can barely walk safely at all. I imagine that people will state that it worsens as the day goes on due to fatigue. But I don't understand that it might be fatigue when I have been sitting down all day far more than standing up and/or walking?
This week I have had Zimmer frames issued for use in the house. And the way my walking is feeling this evening I am going to have start using them. But I am concerned that I will not be able to carry anything when both of my hands are on the Zimmer frame, especially things like my food and drinks etc.

[Kayleigh]

Hi Panniertank,

I hope you don't mind me replying to your post on an 'Ask MND Connect' thread. I just thought I'd offer you the following suggestions and input, in case they are helpful.

Perhaps speak to your OT about the issue of wanting to carry drinks and food safely.

It could be the case that your style of zimmer frame has a tray attachment that could be provided for you.

Another option might be a trolley style walker with brakes, for example.....
http://https://www.completecareshop.co.uk/household-aids/household-trolleys/combination-trolley-walker?gclid=EAIaIQobChMIs8j1y4qa5QIVTtHeCh2lNQxdE AAYASAAEgJrQ_D_BwE

I can relate to what you are saying about getting tired. I get tired by the end of the day, just from doing things seated in my wheelchair for most of the time. It takes some getting used to but we have to pace ourselves and allow ourselves enough time to regularly rest and relax, if needs be.

Best wishes,
Kayleigh

[Lynne K]

Kayleigh has given you good advice Panniertank. . Right click on the link and forward it to your OT. Ask him or her to order one for you asap. Love Lynne

[Barry52]

Hi PT,

I use one of the trollies that Kayleigh refers to and it is so useful. Make sure you request one with brakes when you speak to your OT. Don’t concern yourself with fatigue as even with a sedentary routine this disease saps your energy.

Best wishes,
Barry

[panniertank]

Thank you all for your advice. I have e-mailed my physio as you suggested ( in my clinic, it is the physio not the OT that arranges equipment like this). I can't believe how suddenly my ability to walk has worsened, especially indoors. My ability to walk indoors is the main thing that gives me confidence to get outdoors but, now I feel a crisis looming!!

[panniertank]

On Monday this week my walking was terrible and I had to use the Zimmer frames indoors. I didn't have my evening dinner as I wouldn't have been able to carry it to my living room/ dining room. Yesterday my walking improved and it gave me the confidence to go out in my car. But I couldn't park up at several places, the blue badge parking spaces or normal parking spaces were maxed out, including at my mum's care home. This morning my walking felt the same as yesterday. It is a nice day weather wise so I planned to go out in my car again, and especially to try to visit my mum in her care home. But, just after lunch my walking suddenly worsened again and destroyed my confidence to go out. Concerned that I would not be able to have dinner again I attempted to get my walking frame out of the boot of my car ( it doesn't have trays etc like the indoor frames you suggested but it has a seat that I could put my dinner on ) . I managed it but really struggled and didn't feel safe. Which will affect my confidence now to get the frame in and out of my car ( and for safety's sake I feel it always needs to be in my car when I drive). So another wasted day stuck in the house and extremely bored. And I am gutted I couldn't visit my special mum and give her my time and my love. I used to visit her several times a week and took her out often. But now I am struggling to visit her just once a week. As ever any attempt to do something positive and MND always kicks back with a negative to destroy my confidence. The human body is so complex and it's incredible how many diseases people can catch through no fault of their own. I am devestated how my life is being ruined and this variable and suddenly worsening walking is exacerbating my fears of living alone with MND.

[Gillette]

Dear Panniertank,

It is so difficult to hold on to your confidence in such circumstances.

Have you spoken to your GP? You are sounding increasingly depressed, which is worrying. It will be even more difficult to cope if you have depression so I urge you, very strongly, to see your GP urgently.

[Barry52]

Hi PT,

I emphasise with your struggle as simple things like lifting a walker from your car are challenging. I have found that rather than putting my walker in the boot I put it behind my seat and hold onto the door afterwards. Apologies if you have a 2/3 door car as this won’t work.

Keep thinking positively and I hope you can manage to visit your mum safely. I am going to see my mum this weekend but it involves a 350 mile round trip. She is worth it.

Best wishes,
Barry

[panniertank]

Thank you Gillette and Barry. Barry, I appreciate your advice but, when I first attempted to put the walking frame in my car a few weeks ago, I initially tried to get it in the back door ( I have a 5 door Focus ). But it wouldn't fit there, especially as I am a tall person with the drivers seat fully back. So it will only fit in the boot with one of the rear passenger seats lowered. Enjoy your trip to see your mum. You are more courageous than me travelling that distance. I often feel anxious about getting out of the house. But putting my mum first is one way I have often attempted to get out, to make sure I give her my time. But now my sudden worsening of my ability to walk is overcoming any positive attitude . Today I am struggling to walk safely around my house, even with the walking frame. I am seeing my OT soon, so I hope she can help me.

[panniertank]

My OT has provided me with a trolley so I can at least cook my food and move it around the house. But my walking seems to be consistently worsening and I am having to use a Zimmer frame indoors or the trolley or my 4 wheel walking frame (which I feel safest with ).But I don't know now how I am going to get outside safely and walk to/get into my car, especially as my driveway is on a slope. And when I wash my clothes my tumble dryer is outside and in my garage so I don't know how I am going to access that.

[panniertank]

I have just had a horrid experience. Yesterday my walking improved indoors and i wasn't using the Zimmer frame. It gave me the confidence to try and get in my car and go for a scenic drive. I hoped that would then give me the confidence to drive today to my weekly supermarket food shop. I went, but found it difficult getting my walking frame out of the boot of my car. A member of staff got me a trolley but, as I walked around and did my shopping I felt my balance and right leg strength worsening. A member of staff assisted me back to my car and I struggled to get my walking frame back in the boot, so she had to do it. Once I got home I struggled to walk up my sloping driveway with a crutch. I eventually did but then it was a massive event getting my shopping out of the boot of my car ( I used my newly supplied indoor trolley but it was very difficult getting it up and down my doorstep). So , a positive attitude to the day kicked back by MND and my worsening balance and right leg strength. As stated before, I now have no confidence to negotiate my sloping driveway to get in and out of my car. And I have lost my confidence to get my walking frame in and out of my car boot. I was hoping my shop would give me the confidence to drive to my mum's care home to visit her. But MND has made sure it has destroyed any confidence. I am at the initial stages and it is so difficult living on my own with it. I am terrified of my future.

[MNDConnect]

Dear Panniertank,
I am so sorry to hear about your ongoing difficulties and concerns in relation to your mobility problems.
From your previous post, I understand that your physiotherapist takes the lead with mobility aids. But given the difficulties and challenges you are facing, it really is essential that you seek guidance from an occupational therapist in order to seek advice and support in relation to staying safe in your home environment. If you do not currently have an occupational therapist, your GP could make a referral on your behalf.
Kind regards
Ruth

[Lynne K]

Hi Panniertank, Ruths advise is great from MNDA so good luck with those suggestions.

I think that you need a powered wheelchair and if your arms and hands are ok then a WAV that you can drive to your car with, drive into the back or side of your car and then after securing your wheelchair transfer to the drivers seat. Suitable new WAVs might have a whopping expense down payment (such as £10,000) but there may be nearly new WAVs available with a more manageable down payment. As soon as you get a powered wheelchair and suitable ramp to get you over the threshold of your home you could get a wheelchair assessable taxi or dial-a-ride disability bus to do your shopping and other stuff while you decide about which WAV to get. These options might suit you now on good days if you can get down your drive with a walker. Look at Topro walkers. I feel much more stable with mine. It has a good seat so you could rest your bad leg and it might give it more strength for you to carry on. My physio ordered my Topro 4 wheeled walker after I sent her a link.

Take care,
Lynne

[panniertank]

Thank you Ruth and Lynne. I do have an OT as part of my MND clinic. She has been very helpful and visited me last week. She mentioned things like powered wheelchairs or scooters but my home still hasn't been adapted to be wheelchair accessible and getting quotes etc is taking ages because the builders and the careandrepair charity are maxed out. And something the OT and careandrepair surveyor have mentioned a lot is difficulties with ramp access due to various issues such as the size of my front door and sloping driveway etc.

[Lynne K]

Hi Panniertank, sounds like you need to have your front door frame widened and a suitable easy to open door ie automatically opening by clicking an associated key fob. Also you need that any internal doors and back door of your home that are not wide enough for a wheelchair and/or need another ramp to be adapted. Would threshold ramps do the job if you have door access widened? Lynne