Hi all, My first post

[podgeuk]

Hi everyone, my name is Steve, I live on my own and I am 72 years old. I was diagnosed with MND just over 3 weeks ago, although my consultant believes I have suffered with it for over 18 months. The reason is, I have had problems with my left leg with walking being virtually impossible. I have fell over most days and once broke my shoulder in three places. During this time, I have seen various doctors and consultants, had MRI scans and x rays all with no indication of what was wrong. In the end I paid privately to see a Consultant neurologist who sent me for an EMG test and 2 days later he rang me and gave me the news. With my consultant’s recommendation and after blood tests I am starting to take 50 mg Riluzole twice daily. Obviously, I have loads of questions which include why am I forever rushing to the toilet? Sometimes not making it. Help with claiming Attendance Allowance and as I drive why can’t I claim Mobility, why does it cut off when you are 65?
Hope everyone is staying safe and not visiting to many pubs and restaurants. LOL

[Shaun]

Hello Steve and welcome
sorry I can’t answer your first questions, you will learn this illness effects all differently, but someone will be able to advise on your question and any others you may have
just a quick one for you, have you made contact with your local MNDA group yet
And remember, you are not alone now!
s

And yes I am going to pub and restaurants enjoy life....

[podgeuk]

Hi Shaun, thank you for your post. I have been contacted by my local MNDA group but have not had chance to contact them, but I will. Reading this forum, which I have found extremely useful, I have learnt this illness appears to affects all differently.
Enjoy your pub and restaurant visits and have one for me.
Steve

[Ellie]

Hi Steve and welcome to the Forum nobody wants to join...

You don't say if it's bladder or bowel urgency affecting you (oh yes, nothing is off the table here 😏)

Diarrohea is a common side effect of Riluzole, particularly as your system is getting used to it.

If it's your bladder, it may be spasms causing frequency urges and meds usually help this.

Either way, don't assume all your ailments are down to the MND - we're as prone to normal ailments as the next person so if something doesn't feel right, check it out with your GP.

And Steve, no more falling!!! Have you got mobility aids to keep you upright?

Love Ellie.

[podgeuk]

Hi Ellie, thank you for your reply and warm welcome. I hope you are keeping as well as can be expected,
I cannot believe nobody wants to join. Although I have only been on a few days but feel there are a load of caring people and lots of useful information. It is my bladder and have had problems for over 12 months. Thankfully, my doc is arranging for me to seen a urologist, or the wee man….. unless he or she is tall then it would be the tall wee person
Occupational Therapy sent me two stools with arms, but I purchased a Rollator, 4 wheels with a seat. This has changed my life. I now even go shopping if I have someone with me.
Hope to hear from you soon.
Steve

[DeeH]

Hi Steve

Just on this forum for the last week, as husband joined the club last month. Regarding benefits, see if you can access an advocate for disabiltiies, they can push on your behalf. Mum (has Alzheimers ) has one, he was amazing, to get her self directed support (in Scotland). In England and Wales called Direct Payments, these are to help you remain independant. Mum gets Telecare 24/7 as she lives alone plus a support worker for 6 hours to help with shopping and other things.

The Rollator sounds great.

Good luck

All the best

Donna

[Mary C]

Hi Steve ,I have been diagnosed 8 weeks so a newbie to MND.I sorted a blue badge for parking,I am 65 so got awarded Personal independence payment .Most equipment ie frames, hospital beds, orthotics(in my case an ankle support) are available via NHS.My neurologist referred me to the MND palliative care team and within weeks I had met the physio, the occupational therapist and speech and language therapist.I was a bit concerned about losing the ability to talk in the future so the speech therapist is helping me to do voice banking whilst my voice is strong.I made sure my lasting power of attorney was registered so my hubby and kids can act on my behalf if for whatever reason I can’t be independent.I was a social worker in a hospital.Hope you get on well.xxx

[miranda]

Welcome Steve. There’s a lot to get your round but ask away and someone here will have an answer or’Know where to direct you and your obvious sense of humour will help! There’s a benefits advisor at MNDA.

[Ellie]

Mary C Hi Mary, I just want to welcome you to the Forum, though sorry you had to join us. Hope to hear more from you in time - your past experience as a Social Worker will be useful 👍

Take care.

Love Ellie.

[Ellie]

Yes Steve, as Mary says, your rollator ought to have been provided but many people end up buying some small aids & equipment rather than 'beg' and/or wait ages - it shouldn't be that way but sometimes it is 😫

You should always first ask for equipment, although I know you may not know what piece of kit exists for your needs and, as you get to know your OT, you'll get to know how squeaky you need to be! You'll find your bank account depletes as aids and mobility equipment tend to be very expensive...

If you find the rollator runs away on you, an old friend of the forum used to put weight on it (he used a large, full bottle of water) and it behaved better.

Yes, I am well, thanks for asking 😘

Look after yourself.

Love Ellie.

[Barry52]

Hi Steve and welcome from me.

I’m pleased you have a 4 wheel rollator as the standard Social Services one tends to be 3 wheels and they are not as safe. Ellie has mentioned a weight for extra stability which is good around the home but not if you are outside as you may need to lift to negotiate kerbs etc. I have a few different walkers i.e. one lightweight one for lifting into the car, one with a tray top for carrying drinks and a heavy duty one for outdoors. There is a natural resistance to the use of walking aids and it is generally after a serious injury following a fall that we accept the need. We have a no fall motto on this forum.

As you have already discovered there are many anomaly’s with the benefits system and I fail to see why the motability scheme assumes we are passed our sell by date at age 65. I have campaigned with my MP about this but to no avail.

Best wishes,
Barry

[podgeuk]

Hi DeeH, Mary C, Miranda, Ellie and Barry 52,
Hope you all do not mind me answering you all together, it’s just easier for me.
DeeH, how do I contact an advocate? I have received a reply form Attendance Allowance and it will be at least 8 weeks before they contact me again. Typical Work and Pensions.
Mary C, welcome to the forum. Yes I have a Blue Badge but really need an automatic, so was really disgusted to find at 72 I couldn’t claim Mobility. My Neurologist is going to refer me to a physiotherapist and hopefully a speech therapist. No doubt this will be in a few months. Keep well Mary and think positive.
Miranda, thank you for your welcome. Yes, the one thing I hope I will always have, is a sense of humour. Being new to the forum and MND I’m still finding my way around. It would be good for me to contact a benefits adviser.
Ellie, yes perhaps I should have waited before purchasing a rollator but I couldn’t wait. It only cost £45 with free delivery and just as important it’s made in the UK. Bank balance what’s that! I don’t think I need any weight, as it is stable as it is. Being squeaky with OT, oil wasn’t inventive when I was born, so no problem there. I’m begging for an electric chair; some people say if I visit certain US states they will seat me down in one. Seriously I only have a 2 seater and am finding it difficult to get out of this.
Barry52, thank you for your welcome and I hope you are keeping as well as you can be. I did look at a 3 wheel walker but thought they didn’t look very sturdy so opted for a four wheeled one. Only problem with it is folding it to put in the car. I agree with “resistance to the use of walking aids”. I felt embarrassed the first time I went outside with mine, but now no problems.
Kind regards to you all. Stay safe.
Steve

[Ellie]

Hi Steve,

You might find this info about Advocacy helpful in the meantime:

https://www.nhs.uk/conditions/social-care-and-support-guide/help-from-social-services-and-charities/someone-to-speak-up-for-you-advocate/#:~:text=How%20to%20get%20an%20advocate,being%20made%20about%20their%20care.

Love Ellie.

[Lynne K]

Hi everyone, my name is Steve, I live on my own and I am 72 years old. I was diagnosed with MND just over 3 weeks ago, although my consultant believes I have suffered with it for over 18 months. The reason is, I have had problems with my left leg with walking being virtually impossible. I have fell over most days and once broke my shoulder in three places. During this time, I have seen various doctors and consultants, had MRI scans and x rays all with no indication of what was wrong. In the end I paid privately to see a Consultant neurologist who sent me for an EMG test and 2 days later he rang me and gave me the news. With my consultant’s recommendation and after blood tests I am starting to take 50 mg Riluzole twice daily. Obviously, I have loads of questions which include why am I forever rushing to the toilet? Sometimes not making it. Help with claiming Attendance Allowance and as I drive why can’t I claim Mobility, why does it cut off when you are 65?
Hope everyone is staying safe and not visiting to many pubs and restaurants. LOL

Hi Steve, I’m sorry that you had to join us. Like you most of us go around doctors and don’t get diagnosed until later.

I know what you mean about Motability and some benefits cutting off at different ages. It’s ridiculous. But you ought to qualify for a carers package and wheelchair services. If you get in touch with the MNDA Helpline they’d tell you what you’ll be able to claim for and what help and services you can get. Take care, Lynne

[Lynne K]

Hi Steve ,I have been diagnosed 8 weeks so a newbie to MND.I sorted a blue badge for parking,I am 65 so got awarded Personal independence payment .Most equipment ie frames, hospital beds, orthotics(in my case an ankle support) are available via NHS.My neurologist referred me to the MND palliative care team and within weeks I had met the physio, the occupational therapist and speech and language therapist.I was a bit concerned about losing the ability to talk in the future so the speech therapist is helping me to do voice banking whilst my voice is strong.I made sure my lasting power of attorney was registered so my hubby and kids can act on my behalf if for whatever reason I can’t be independent.I was a social worker in a hospital.Hope you get on well.xxx

Hi Mary, it’s great that you got all of the services quickly. Good luck with your voice banking. Love Lynne x