Independence and Quality of Life

I suffer from a progressive disease, I have less stamina now than 6 months ago, everything calls for a greater effort and it will only get worse.

How important is independence and Quality of Life?

How important is independence and Quality of Life?

A couple of questions

Do you think your disease is robbing you of your independence and taking away your quality of life?  What steps are you taking to retain your independence and to stop your quality of life slipping away? Some people put their head in the sand – don’t do that.

My thoughts

It is vital that I retain my independence and maintain my quality of life.  I must look at things positively and find out what I can still do. Use what I have not lost to retain both my independence and my quality of life.

Why a Musmate?

My left leg has very little strength. I cannot lift or even control the left foot. It has a mind of its own so I use a Musmate . The Musmate helps the mechanical process of walking by lifting my left leg off the ground when I swing the leg forward as I walk. Incidentally my left leg is a reason why I fall over so frequently.

Bladder control

This is a big issue with so many people who have MS. It was becoming a serious issue for me. Wherever I went I was looking  how to get to the nearest loo just in case. It was controlling my life, I had to find a solution.

Self Catheterisation

In 2007 the MS nurse showed me how to use a catheter for my dysfunctional bladder.  Suddenly I was much more independent. Bladder control is something that is taken for granted until it starts to go wrong.

A car is an essential aid to modern life

I have double vision and bad peripheral vision so I cannot drive a car,  too big a risk 🙁  At first I put on a brave face, saying that I was quite relieved not to have to drive again. I was working abroad at the time so I did not need a car during the week. I live in the middle of a town so getting to the shops was not an issue. The problems of not having a driving licence only hit me when I was at home between contracts. We thought a wheelchair would give me independence.

The Hermitage Museum, St Petersberg

The Hermitage Museum, St Petersberg

We bought a wheelchair

To get around in a wheelchair is much easier if the ground is flat and with no camber. I do not have the strength to push myself up a slope or across a camber. We originally bought a wheelchair because we were going to St Petersburg and I would not be able to manage the walking.  I have not used it since we returned.

A Rollator

In 2009 the MS Therapy Centre at Halton suggested a rollator. Its wonderful, it means I can walk and sit down when I get tired. I can use it to carry my shopping.

Its really helpful

Using a rollator I can walk much further and faster. With a stick I can manage 200 metres, it takes me about 5 minutes and I must be on a flat and level surface. Using a rollator I can manage to walk about 1 Km and it does not have to be completely flat and level.

Travelscoot, my mobility scooter

Quality of life and independence

Quality of life and independence

I bought a Travelscoot in the summer of 2011, So many places suddenly became accessible. I do not have to depend upon other people to take me anywhere. It has given me independence and my quality of life has improved.

Your quality of life and independence?

Tell me about your quality of life and how you have overcome the problems that affect you. MS is bound to have been affected your independence, What steps have you taken to retain you r quality of life?

Problems, problems and more problems

Yes we all have issues and they need to be resolved. Have I given you any ideas?

5 responses to “Independence and Quality of Life”

  1. Kathryn says:

    Hi Patrick
    I am in the South Yorkshire area and its quite a recent new rule that was brought in at the end of last year, in the first instance to use on trams, I think they were getting a few problems with people taking the large mobility scooters on them, the kind that are used on roads. I think it was a space issue really as there are wheelchair places on the trams, but i think that the larger mobility scooters were too big to safely fit in them. They have since started using the permits on the buses too, basically you have to have the mobility scooter inspected to make sure its in good condition and safe for use, and also to check the size that it will safely go on the vehicles. Once you have a permit thats it, it has the make model and maybe a photo , its just to show the drivers that the scooter is approved to travel. You still have to pay to travel if you normally do or show your travel pass, its purely a scooter pass. Its just more red tape, I feel sorry for those that had a large scooter and can no longer use the services, I don’t know how they have gone on, but it seems bad that one week its fine to take them on and all of a sudden they can’t use the public transport anymore.
    Kathryn

  2. Patrick says:

    Hi,

    I use public transport, the buses and the trains and also aeroplanes. The requirement of a permit has never arisen. I take the train to London and then use TfL buses. If travelling by plane then I tell the airline in advance that I am disabled and have a mobility scooter. If it uses a dry cell then I will have to keep it with me as hand luggage.

    Out of interest who says that you need a permit? As I have said that is a new one on me
    Patrick

  3. Kathryn says:

    Hello Patrick
    Thank you so much for the quick reply and for the information you have given. I know it would be classed in group 2 by the speed you have given, which is fantastic as it means I would be able to get a permit to go on public transport with it. I still drive but I tend not to use my car very often as my problem is I can’t walk very far before needing to sit down again, so even if I go out, I never seem able to stay out very long. I think the travel scoot would be just the right thing for me, and allow me more freedom and independance. I shall have to ponder on which version I fancy now. Thank you.
    Kathryn

  4. Patrick says:

    Hello Kathryn,
    I do not know about classification details. Top speed is 4 mph. It has enriched my life and given back independence that I lost when I had to stop driving.
    The European Travelscoot rep said in an email I received earlier this week “In about 3-4 months a new version of the scooter will be available. It will have a rim motor (built inside the wheel) and the belt is eliminated. Also it will have a reverse function and much better brakes.”
    Regards,
    Patrick

  5. Kathryn says:

    Hello Patrick
    The travel scoot looks great, I fancy one myself, I think it would help me out lots. Do you know is it classed as a grade 3 mobility scooter ? I ask this because it can go up to 6 mph. It is the only thing stopping me from getting one , as if it were to be a class 3 I wouldn’t be able to take it on the local buses or trams without dismantling it every time. If you know the answer, I would be most grateful. I hope you are managing to get around on it ok and that it has enriched your life. It looks a handy scooter to have, and much nicer to look at than the standard square ones, but I guess its a matter of personal taste.
    Regards
    Kathryn

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