Lining alone#2

[panniertank]

When I fell in the beginning of August it had a big impact on my confidence to get out of the house and I have now been largely housebound for the best part of 2 months. My main symptom at the moment is poor balance and weakness of my right leg. But it can be very variable both during the day and from day to day. The physio has lent me a wheeled walking frame and I started trialling it last week. But it doesn't help my balance 100% and I feel that even with a walking frame the amount of walking outdoors I can now do will be limited. Also, inside the house, my balance and leg strength feels as though it is worsening. I had another fall inside my house on Saturday, fortunately not breaking anything. My left wrist was initially painful and I struggled to put weight on it but it is now ok, no bruising etc. After getting out of bed today I am surprised at how weak my leg feels. I just climbed out of my front door to take some rubbish out. It is quite a high step and thankfully the OT arranged for handles to be fitted shortly after my diagnosis. But climbing back up that step today was the hardest I had ever found it.
So, I am concerned that my right leg strength and balance symptoms are progressively worsening and that soon I will be wheelchair bound. But my house still hasn't been converted to be wheelchair accessible. It has been taking ages and ages to get quotes and all the companies are maxed out. And it will not be relatively simple building work, probably an extension to provide a downstairs wetroom and bedroom. So my main question is what will happen if I become wheelchair bound soon and my home hasn't been made wheelchair accessible? As stated many times before, I live alone and feel very isolated and I am terrified and stressed out by the prognosis of MND. A part of me has been proactive and considering planning ahead about some things. But I am struggling to cope on my own, I am largely housebound and often stressed and depressed. And I feel I hardly have a life beyond MND. Every day it seems like I am constantly thinking and worrying about MND.
SORRY this thread should be titled LIVING alone#2. Spelling mistake

[Lynne K]

Hi Panniertank, I'm sorry that you are almost housebound. Maybe speak with your GP about treatment for stress and depression. Meds may help you cope and sleep better.

About getting out of your front door with a wheelchai, temporary foldable ramps are available but it depends on your step and the available space beyond. Other than that get a quote from a builder for converting your front step into a ramp. A simple job ought not be overly expensive and MNDA may give you something towards it. But some jobs are more complicated so could be a few hundred pounds. Ring MNDA helpline for advice. I hope that they can offer advice and this will put your mind at rest.

About your walker. Is it 3 or 4 wheeled. I had a 3 wheeled for about eighteen months but swapped it for a 4 wheeled about 3 weeks ago. 3 wheeled do let us down. I fell several times with mine. I haven't fallen since I got the 4 wheeled but it won't be long until I'm wheelchair bound too. I have to use a wheelchair outside now.

Good luck finding solutions. Lynne x

[Sheila]

Hi panniertank, good to hear from you. Sorry to hear about your stress and depression. I had a meltdown today cried and cried. Got myself really down. This Mnd scares me, so you are not alone. My best way to cope is to try and not think about it. Difficult I know.
I have a 4 wheeled walker which helps, but like Lynne I am finding myself more in the wheelchair. It is so frustrating losing my voice and legs. No wonder we get so down, we have alot to try and deal with.

Take care

Sheila x

[Terry]

Hi PT;

No magic words of wisdom, I'm afraid but as Lynne said, give MNDA Connect a ring and they should help you.

Love Terry

[kd1]

I too have no simple solutions but would encourage you to follow all the suggestions others have made. But I would add that I have found you don't have to be wheelchair bound immediately. You can use it for outside (is there a shed or anywhere you could keep it?) and just on the days when you feel wobbly or tired. I moved to a powered wheelchair which was really liberating and for well over a year I only used it outside (walker, 4 wheeled, inside). Even now, many falls later I still do a little walking inside though the balance has changed. Yes, it's obvious where this is heading but every day I can keep going is a bonus.
I know coping alone is extra hard for us and in order to do that we need to be robust psychologically. So do please speak to your GP and MND nurse. I went to a course at the local hospice which was generally helpful; I wonder if you might be referred to something similar?

[MNDConnect]

Hello Panniertank,
I was so sorry to hear of your recent fall and understandably how this has knocked your confidence. Firstly, I wondered if you have had recent contact with your occupational therapist. As it is really important that you bring to their attention the recent falls you have had.
In addition, as others have advised, your GP maybe able to provide support in relation to your emotional wellbeing.
Please know that we are there for you and as such, please can I suggest that you make contact with us either on our freephone helpline number 0808 8026262, or alternatively via email at [email protected].
We will do all we can to support you.
Regards
Ruth

[panniertank]

Thank you all for your responses. My physio is coming tomorrow to teach me how to use 2 crutches. I'll explain things to her. My leg and balance felt better this morning and it wasn't gusty outdoors, so I went out to practise using the 4 wheeled frame again. But, as before, I didn't feel safe especially on anything but flat surfaces. Not long after I went out I felt my balance and leg strength worsening and I feared I would not get back to my home. So I turned back but, when I got back to my street I felt a bit better so continued walking for the best part of an hour. Ever since my symptoms started I felt I had to try to walk as much as possible to counter this cruel condition. But it looks like walking reasonable distances is coming to an end. Ironically walking ( especially in the countryside and my beloved Dartmoor) was one of my main hobbies and very important to do weight bearing exercise with my spinal rheumatic condition. And it was one of my main ways to deal with stress and anxiety. But now it is so difficult and a major source of anxiety!!

[Lynne K]

You are not alone Panniertank. I hill walked and did lots of local walks for multiple reasons: the joy that doing these activities gave me and the benefit for my back condition (degenerated discs, arthritis history of slipped disc and ongoing pain). I suffered anxiety through a horrid divorce and the mental breakdown/turmoil of two of my children.

Walking flooded my system with endorphins. I was hooked on this. It kept me on an even keel and kept my weight where I wanted it. I could go on.

I knew that my back would deteriorate once I couldn't walk much. It's seriously painful nowadays when I lie down. Tramadol with paracetamol makes it bearable at the moment.

For keeping me mentally fit I've substituted reading for the walking. The more complicated the factual books and the more deep and exciting the thriller books the better. These are good distractions.

Good luck with your physio meeting tomorrow. Please update us afterwards.

Love Lynne x

[panniertank]

Cheers Lynne. I am so sorry you've got MND after all you had gone through previously and especially as you are a mum. With my love of walking I am so sorry that you enjoyed it so much as well and now it is in your past. Life can be hard enough at the best of times, I wouldn't wish MND on anyone. I often wonder why humans can have so many self destructive illnesses.
Take care

[panniertank]

Uggh. Every day seems 150% dealing with MND. I have been trying to sort out getting my house converted to be wheelchair accessible. It has been taking months and months and getting nowhere. And meetings I have had this week have had so much information to take in and often contradictory. So difficult to make a decision.There are loads of other things I have still got to sort out such as my power of attorney and again, so much information to take in and so difficult to make a decision and loads of paperwork. And there are other basic ( for a healthy person ) things to sort out such as getting my car mot'd and serviced. I have had to e-mail the garage about a number of questions such as safe accessibility when I get out of the car, maybe with a walking frame and transport back and forth. But over a week and they still haven't responded. It was the first day of reasonable weather today for several days. So I should get out to practise using my walking frame. But my day was 100% MND until about 3.30pm with hospital appointments and meetings about various things. So I just didn't have the energy or confidence to get out;- my head just full of anxiety about falling or struggling to negotiate difficult parts of the pavements. I have been largely housebound for the best part of two months and as much as I hate that I am becoming so anxious about getting out of the house. The walking frame hasn't given me the confidence I hoped it would.
I am at the early stages of MND and struggling to cope, especially as I am so alone. I dread to think about how I am going to cope in the future as the condition progresses.
,

[Terry]

Hi PT;

Sorry to hear of your struggles and not making any headway.

From a useless, Terry

[Lynne K]

I can understand your fear of getting out with your walking frame Panniertank. I've been there even though I've got a partner. I've been stuck in myself for a couple of weeks, other than one day out to the 10k. Actually I was fed up before the 10K. That's not like me at all. I normally keep upbeat.

It might be a good idea to get a motability car on one of their leases. At least then if you had to give up driving in the future they'd pick it up and give you something back from your contract. You could sell the car that you have now and maybe use any profit for your up-front fee on a suitable WAV. Lots to think about I know. I hope that I haven't caused you even more stress.

Good luck with having a more relaxing day soon and hopefully you can get a powered wheelchair soon and a ramp so that you can get it out.

Hugs, Lynne

[panniertank]

Thank you for your feedback and suggestions Lynne. My house has a sloping driveway and that is one of the complications about whether to build an extension or convert the garage etc. A ramp for wheelchair access might take up a lot of space and might even take away the parking spaces. So getting a powered wheelchair and fitting a ramp wouldn't be straightforward;- nothing seems to be!!
I am sure you are not useless Terry. I feel I am. Like I have said before, I was burned out and struggling to cope with life before my symptoms started and I had been through several life changing events. I struggle to cope with change and the changes that MND are bringing are terrifying. If I was a pannier tank i would be scrapped!!

[Lynne K]

Hi Panniertank. I have a ramp to the right of our front door. It starts sloping to the left to join the steep path down to our car. It's a serious challenge with my best walker, the Topro, and too dangerous with my lightweight one. My powered wheelchair manages the slope but to come back up I have to put speed on and stop immediately at the top before I hit the flat wall in front of me. But I 've coped so far with some trepidation.

I guess having a good ramp is more important than parking spaces. Unless you are able to have a ramp at your back door. That's if you'd be able to get around the front ok. Good luck with sorting something out. Lynne x

[Lynne K]

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