New to forum

[Tess]

Welcome Lesley

[CW100]

Hi Lesley. Welcome to the group. I’m also a newbie and like you was fobbed off before getting a diagnosis privately (my GP suggested RSI and rest, and then a trapped nerve). Thankfully once diagnosed the NHS support is really good (albeit I’m at the beginning of this journey).

[LesleyB]

Thank you , Mary. Can’t wait for this lockdown to end. I have a lot of friends who would love to help.But at the moment it’s just me my hubby and the dogs . The MND team have been in touch and have been happy to come to the house and a couple of online meetings too. Even collected a wheelchair so we can start having a few trips out. When it stops raining of course.

[Mary C]

Hi Lesley ,I too started having footdrop and some similarities to your experience until eventually getting diagnosed June 2020 at age of 65.We too had retirement plans for walking holidays and travel which we no longer want to pursue.. This forum has helped me in many ways plus good professional relevant support and a circle of close friends and family plus my catholic faith to find the blessings in each day. Its not easy but many people on here have found a way to adapt to changes and of course there are frustrations. A house move is a big change too.I wish you well Lesley.Best wishes Mary

[LesleyB]

Hi Everyone,

Thank you all for the support.Ellie , my doctor is a neuroligist at St Lukes in Bradford. So not sure about MND team. I got his name originally from a Neuro Physio who was a friend of a friend. I don't live in Bradford but only six miles away. Yes, I have already had contacted from my local pyhsio, OT team and had a call from speech therapy. Plus my GP has spoken to me a few times.As I said to my husband, as soon as you give a name to something then the action began.At the moment we are taking one day at a time. It has come at a junction in our lives when our plan of retiring after running a pub for 26 years has been thrown a little.I have always been the get up and go one, rushing around getting things done etc.We are in the middle of selling up and moving house .All has to be done with me directing and him doing! Bless him he has taken it in his stride. The lockdown as you all no, is difficult when you can't have family or friends along to help.

[Suefromwakey]

Hello Lesley B,

I sympathise with you and know your position as it took absolutely yonks for my husband to get his diagnosis, it would seem as some of the others say this is not unusual whereas some seem to get a diagnosis almost straight away, they must present differently.

Best wishes Sue

[richard]

Hi Lesley welcome to the group no one ever really wants to join however upon joining you find an amazing bunch of people on the same journey.

Richard

[Lynne K]

Hi Lesley, welcome to our forums and well done for posting. As said already first posts can be hard. Also, I’m glad that at least now you have a diagnosis you can receive help from your local services. I certainly hope that this happens very soon. I don’t wish to overburden you but when you feel up to it please have a look at previous posts about voice banking. Take care, Lynne x

[Barry52]

Hi Lesley and welcome from me. I hope you have a good support team set up and you can be sure of support from the forum family.

[Deb]

A warm welcome to the forum, Lesley. Its a good place for friendship and support from people who really understand.

I'm so sorry you've had such a hard time being diagnosed and have been given the runaround. Unfortunately I don't think that's unusual. Hopefully now you can access thx support you need to make life easier and safer for you.

Take care of yourself,
Love Debbie x

[GaryM]

Hi Lesley and welcome to the forum from me. You've done the difficult thing, which is that first post. Lots of helpful people on here with lots of useful experience.

[Gordan1111]

Hello Lesley. xx

[matthew55]

Welcome Lesley, In the immortal words of D:Ream...... Things can only get better. It doesn't always seem that way but something good will come from somewhere. Stay Strong Matthew 😁xx

[Bowler]

Hi Lesley. Welcome to the forum. I look forward to chatting

[denise]

Hi Lesley
it's horrible that you had to go through that.
I hope you join our forum and we will be hear to help and support you as much as we can.
love and hugs Denise xxx