new member / single person

[Lynne K]

Thanks Pan...' X

[panniertank]

Hi Lynne. That sounds like a big achievement especially achieving it in your 40's. And on top of your other massive achievement of being a mum. Well done.

[Lynne K]

Hi again Pan.. Same here. I was discounted at school, refused to do GCE's despite having a career idea that needed biology GCE. They didn't seam to care. Only my Art teacher had confidence in me and put me into an Art and Design GCE. I got a Grade 1 English Language CSE so could have easily done a GCE in that. I was very interested in all things Sciences so I could have done Biology and Chemistry GCE. But left school feeling that an injustice had occurred and they had written me off.

I did an Access course aged 39 after my kids had grown up. That was equivalent to 2 A Levels so University access level. I got various percentages and averaged 73%. That gave me immense satisfaction and Liverpool University was the following year. When I first entered the University Library I was elated. Looking around my eyes got a real treat.

Like you I had to work hard for every piece of work. But by the second year I knew what they wanted so it was like building a wall. Thr bricks were my research, reading, note taking and keeping up to date with current social policy on extracts, the radio, broadsheets and TV. I thoroughly enjoyed it despite the obvious stress. I left behind the feeling that I'd carried since school. It altered my whole outlook and lead to a lifetime of critical enquiry and love of reading. I recommend it to anybody of any age who is prepared to work hard. Lynne

[Gillette]

Hi Gillette,
I see your location is Greater Manchester. I went to university in Manchester ( back in the 80's ) and use to drink with my mates in a local pub which was popular with students and also local citizens ( sadly it's a pub that is long gone now ). When speaking with northerners about various things my non northerner mates and me used to laugh about a saying the northerners had;- " oh well, life's hard and then you die ". . It made us laugh back in those young days but, it is a very simple and very true saying. Especially now!!

Hi Panniertank
Although I live in Greater Manchester I’m actually a southerner (shock, horror) so a lot of the sayings up here are a mystery to me. However, my late husband (also a southerner) used to say the one you mentioned.

[panniertank]

Hello Lynne. I studied an engineering degree and back in those days it was at UMIST. After working a number of years I went back to uni to do a masters degree. I don't think or feel I am exceptionally intelligent ;- I felt I got my degrees through concentration and hard work. When I look back on my life they were one of the hardest things I did but also one of the things that make me feel I have had a good life. Stretching my brain as far as it would go;- almost equivalent to climbing a steep mountain for my brain.

[Lynne K]

Panniertank , my youngest daughter is in her second year on an English degree at Manchester Met. She had an offer for Manchester but preferred the course outline at Manchester Met. What did you study? I did Sociology as a mature student at Live 1994 /1997.

I hope that your front step gets sorted out quickly. Lynne x

[panniertank]

Hi Gillette,
I see your location is Greater Manchester. I went to university in Manchester ( back in the 80's ) and use to drink with my mates in a local pub which was popular with students and also local citizens ( sadly it's a pub that is long gone now ). When speaking with northerners about various things my non northerner mates and me used to laugh about a saying the northerners had;- " oh well, life's hard and then you die ". . It made us laugh back in those young days but, it is a very simple and very true saying. Especially now!!

[Gillette]

Hi Panniertank

Unfortunately MND has a nasty habit of moving the goalposts when you think you have it sussed. It can feel as though it’s impossible to stay one step ahead.

[panniertank]

Thanks Barry. Today I climbed out of my front doorstep to put rubbish in my rubbish bags. Another difficult task as I have to keep one hand on the handlebars that my OT arranged to be fitted to my front door. Like you said I was trying to be positive and carrying out a task I was used to ( and it was necessary as my kitchen bench was full of paper, cardboard and plastic or glass rubbish, each requiring putting into a different rubbish bag ). But , as ever with MND, positive attitude and kick back with a new negative incident. My front doorstep is quite high but with the door handles I have been able to climb up and down it safely and my weak right leg has the strength to do the climb. But today it didn't and it was the first time I had never been able to climb that step. I tried several times but eventually had to press my lifeline pendant and wait for the team to assist me back into the house. So, that will add to my anxiety now and I won't be able to climb up and down that doorstep to access wheelchairs ( for ambulances or a company I use to take me out in wheelchair accessible cars). Hopefully the doorstep can be modified (eg extra step fitted) but I can't imagine that will be done till the new year. Happy days.

[Barry52]

Hi PT,

I am similar to you in that I don’t use a walker upstairs because I have two steps to negotiate. I believe the fear is caused by a lack of confidence as I ascend okay with two rails but coming down is daunting. Try to carry out the tasks you are used to but remember that every movement needs full concentration. Look upon movement as requiring choreography.

Best wishes,
Barry

[panniertank]

My balance seems to be worsening again. I have to use my Zimmer frame to walk in the house but, strangely I only use it downstairs. I don't use one upstairs ;- maybe it's psychological because the upstairs rooms are smaller and there are things like the bed to fall on. But, the past 2 days I have had to do my clothes washing and I have really struggled to safely get the clothes up and down stairs and into and out of the washing machine and tumble drier and into the airing cupboard. Just now I climbed down my staircase and even with both hands on the stair rails ( provided by my OT ) my balance felt bad and I struggled to descend the stairs. It is so confusing because my legs have the strength to climb the steps.
As ever I am terrified about my prognosis and the past months have taken me out of denial about my diagnosis. I have largely been stuck in the house for several weeks because I can't walk outside and/ or access my car. And now, if I have to use my Zimmer frame upstairs I fear I will not Be able to do things like my clothes washing or making my bed ( which I have to do every morning) . And I may not be able to access my en-suite shower.
Ever since my diagnosis a part of me has tried to be positive, taking one day at a time and trying to maintain my independence doing things like my food shopping, cooking, clothes washing etc. But, as ever, MND makes sure it negates any attempt to be positive. Living with MND is devestating for anybody but, living alone with it is terrifying. Sometimes I feel I am living in hell and MND is the devil. A part of me sometimes wishes I had the courage to murder that devil.

[panniertank]

Thank you Debbie,
You are right, it is good to try to focus on what you can still do and enjoy. I am glad you like music and reading. I used to as well, especially live music but something has happened to my mind and my ability to concentrate. I struggle to read and watch tv programmes or listen to music.
In my area there is a specialist MND clinic and it has been very helpful, especially my OT, physio and social worker who have arranged lots of things in my house like extra handlebars on my staircase and front door, a riser recliner chair ( paid for by MNDa, very kind ) provision of walking frames etc. So, I have a lot of practical help ( and from the local MNDa staff/ volunteers as well) but not much emotional support . But my palliative care doctor has told me about a course they run , one day a week for 12 weeks which can help with things like anxiety. So I think I will apply to go on that.
I went to my ( 3 monthly ) MND clinic today. I was taken in a wheelchair and ambulance ( I am fortunate in my area there is a non emergency ambulance service ). I can' t believe how much I have changed in just 3months because at my last appointment there I drove myself there and walked from and to my car just using one crutch. And 2 years ago I did a number of walks in the countryside near the town where the hospital is located, often up and down long, steep hills!!
My neurologist thinks my MND has been progressing slowly and observations by my OT also suggest that my balance and ability to walk is being exacerbated by my anxiety.

[Deb]

Hi Panniertank,

I am sorry you are so anxious and panicky, especially in the night. Things always seem the darkest when we cant sleep and it takes a while to get the dose of any meds right for you.

I totally understand how heartbreaking it is to give up something you love permanently and it must be doubly hard if you live alone. I really struggled when I had to give up driving, a job I loved and my independence. I am lucky to have alot of support from family and close friends but it is hard to have to rely on other people.

I totally understand that it's easier said than done but I try to focus on what I can do and what I enjoy still , like reading and music and I try not to look too far ahead. Noone in life knows what tomorrow will bring.

I hope you are getting the professional help you deserve with practical solutions in the house and also the emotional support to come to terms with things.

Look after and be kind to yourself,
Love Debbie x

[panniertank]

Thank you Gillette and Lynne. I am so sorry you can't drive anymore when you enjoyed it so much.

[Lynne K]

Me too Panniertank, I really miss driving and doing my last job as a driving instructor. As Dina says about keep using the service to get you out from your own four walls. I get fed up staying in too despite having a husband who takes me out sometimes. Lynne x