new member / single person

[panniertank]

Hello Scotty. I did read your introduction. I am sorry you have been diagnosed with MND especially as at one stage you were told you definitely didn't have it. I think it is difficult to diagnose especially as there is no specific test for it but the tests done are to eliminate other mimicking conditions. It was interesting that one of your doctors suggested a lumbar puncture. My neurologist has suggested the same but isn't insisting on it. I may be wrong but I think it maybe eliminates/ diagnoses multiple sclerosis.
Take care.

[Terry]

Hi Panniertank and Scotty,

It's just one of the normal tests that most of us have to eliminate other things. They don't give you a diagnosis of Mnd without being pretty certain.

Love Terry

[panniertank]

I am sorry. I am just offloading and probably repeating myself. It is over 3 weeks since my last fall. I have lost all confidence to get out of the house, especially walking. Apart from doing essential things like driving to the supermarket to do my weekly food shop, I have largely been housebound and I am incredibly bored. My brain and concentration seems to have changed in recent years so I can't concentrate on watching tv or reading books. And then at night I have my chronic insomnia to deal with. If my life is this bad at the early stages of MND I just don't know how I will cope as I become seriously disabled. I said in previous posts that I sometimes had suicidal thoughts and/or wished I would just die peacefully in my sleep rather than endure the prognosis. But now I am feeling afraid of death;- I value life and I am devestated how much it has already being ruined. I am only 56.
I have asked my clinic about walking frames etc, as a number of you have suggested, but for a number of reasons it is going to take a few weeks to sort out. I feel so isolated and alone and am now really struggling with life at the early stages of MND. I just don't know how I am going to cope in the future as this condition progresses.
Last year I was on early retirement and for a number of reasons I was holding back my spending. I often beat myself up that I was wasting the year but on reflection I achieved so much compared to the nearly 12 months since my MND symptoms started seriously!!

[Lynne K]

You ought get an OT (Occupational Therapist), Physio, Speech Therapist, maybe a Social Worker and soon Wheelchair Services to give you at first a manual wheelchair. OT can get you aids for at home. Physio can get you walking aids ie walkers to keep you safe when walking whilst you can. If you don't have any of these services yet ring MNDA for advice. X

[Gillette]

Hi Pannier Tank,

Sorry that you are feeling so down. Have you asked at your MND clinic for a referral to the Community Palliative Care Team? Alternatively, you could ask your GP for a referral. Once they have been in contact things should start happening in terms of equipment and so on.

Good luck.

[Terry]

Hi PannierTank;

There should not be any reason you can't get any basic equipment. Contact Mnda connect and explain things. Also I don't know if you have had any contact with your local hospice as they too will help with advice and equipment.

A week in hospital would cost many tens as much as some basic equipment.

Please stay safe.

Love Terry

[Deb]

Hello Panniertank,

I am so sorry you are feeling low but it's not surprising as it seems like you have been left to cope alone. There is no reason why basic mobility aids like a Walker take time to sort out and you may feel less vulnerable when you feel safer, especially as you live alone.

There seems to be such a lottery with the care and mobility aids we receive. My OT and physio have been proactive at staying one step ahead of my changing needs. They have ordered things before I needed them ( or was ready to accept I needed them !) They just said Its there if you need it ! An electric wheelchair would give you so much more independence and make you feel safer, especially if you are tired or having a bad day.

I really hope your clinic gives you access to a multi disciplinary team, including wheelchair services, ot and physio. They should be coming to your home to look at how they can make life easier for you.I would ring them back tomorrow and tell them how you feel. It's not the time to put on a brave face.

Take care of yourself.. hope today is a better day for you,
Love Debbie x

[panniertank]

Hello, thank you all for your feedback to my offload.

[Terry]

I can only imagine how things are for you, Panniertank,

If we can help,, we will, even if it's just listening to you.

Don't worry about venting your feelings and frustrations.

Hugs Terry

[panniertank]

Thank you Terry. As I have said before I just can't come to terms with the prognosis and I just can't make / work on all the major decisions I have to make like whether to convert my home to be wheelchair accessible, whether to move into an extra care home and sell my home, sorting out a power of attorney etc etc. I have done some basic essential things like applying for my pensions, applying for PIP, getting a blue badge, informing DVLA etc etc. But given how much time I now have and especially because now I am largely stuck in the house all day, I feel guilty about not making or thinking about all those major life changing decisions I have got to make. I just can't come to terms with how cruel my life has become.

[Kayleigh]

Dear Panniertank,

I'm sorry you are feeling isolated. I'm not an expert about how to cope with this diagnosis but sometimes it helps to talk things through with someone who has an understanding of what we are faced with. The MNDA and local hospices offer support and advice which can help us to come to terms with things and they can help with sorting out the practical side of things as well.

Please don't hesitate to get in touch with the MNDA for support and advice, if you would like to. In addition to the Advisers on the MND helpline, there is also local support available from your Regional Care Development Adviser and at local Branch meetings. In some regions, the MNDA also offers us visits from one of their Association Visitors. Perhaps give the MND helpline a call and have a chat with one of their Advisers - it might be useful to find out what support is available for you, even if you don't need it straight away.

If you havn't been referred to your local hospice, it might be worth considering a referral because hospices can often offer us a range of support and practical help (e.g. help from an OT, counselling, support groups and therapies). Even if you don't feel like visiting a hospice, they can often provide help and support for us at home. I know that getting in touch with a hospice might seem daunting at first, but perhaps consider looking into what services and support your local hospice offers and then ask for a referral if you would like to. Many hospices have their own website, and there is a search facility for local hospices on the hospiceuk website:-

http://https://www.hospiceuk.org/?gclid=EAIaIQobChMI2eL6946h5AIVQ53VCh1wWADpEAAYASA AEgLiQfD_BwE


I'm sorry that I can't be of much help - all that I have to offer is advice, in the hope that it will lead to you receiving more support and hopefully you will not feel so alone and your quality of life will improve as well.

Please feel welcome to share your thoughts with us and ask for advice as often as you wish. Also, please try not to be shy about contacting the Mnda or your local hospice, if you would like to.

Take care,

Love,
Kayleigh x

[panniertank]

Thank you Kayleigh. I am aware of and contacted many of the people you have mentioned. Many people on this forum had mentioned hospices before so I asked about it at my last MND clinic. But , I was advised that there wasn't a hospice available in my area and most of the services one could provide are provided by my MND clinic ( OT, physio, respiratory nurses, palliative care etc ).
At the end of the day, when I have asked for advice, it is usual that very rarely can a definitive answer be given, due to the variable nature of MND progression . And even when advice is given, it is still up to me make any decisions, and I am struggling to do that as I am so burned out. Before my symptoms started I had been through many life changing events that were often very stressful. I was struggling to cope with change but now I have some massive and stressful changes to deal with and I am very very concerned that I will not be able deal with them. As stated before , there are many things I should be sorting out but I just keep avoiding them.

[Gillette]

Panniertank, have you asked for a referral to mental health services either at the MND clinic or your GP? Or, perhaps there is an MNDA Visitor in your area? You could ask MND Connect.

[panniertank]

Sorry just offloading again. It is nearly a year now since my symptoms started suddenly. And 7 months since my diagnosis. But I am still largely in denial and just can't come to terms with the diagnosis and prognosis. I have spoken to MND clinic, MND connect and Mnda etc like many of you have suggested, but I often just can't accept or come to terms with the advice given. I just can't come to terms with losing my independence. And as I have stated before, I feel burned out and was struggling to cope with adult life before my symptoms started. I was especially dreading having to deal with big life changes. So having to deal with MND now is extremely difficult. I am so dependent on my house and it's fittings, my car, my computer/iPad etc and I am dreading anything going wrong with them.
As a part of fear of change and valuing my independence I am terrified of the massive changes of having to move out of my home. So I want to convert it to be wheelchair accessible but I still don't know how I will cope with living alone, and nobody can provide definitive answers about that. When I provided care for my parents I could see how maxed out social services and the nhs were. And I am starting to experience that with the company the clinic use to assess / implement house conversions etc. It has been taking ages and ages just to get quotes and the company have apologised for the delay because they are experiencing substantial demand for their services. Thankfully they have sorted out fitting handrails to my staircase and front door etc as I depend on those now as my leg strength/ balance has gradually worsened.
I feel my brain has changed, like I have said , feeling burned out. My memory has worsened and I feel I have lost some of my intelligence as well. During all my tests, the report on my Mri scan of my brain mentioned atrophy;-my brain was smaller or more aged than it should be at my age. My neurologist ruled this out for understandable reasons but, I wonder why the radiologist mentioned it. As the old saying goes, speak to several doctors and you'll get several different opinions!! Medicine is very complex.

[Streetwise]

do you think you’re at the point where the house is too much of a burden? if not start shopping for a carers agency ,don’t necessarily just take one social services offers , don’t pretend about anything .