An MND sufferer newbie

[Maidinkent58]

Hi all, I was diagnosed with MND September 21st 2018, after 20 months of a living hell. In 2016 I noticed a very weak left arm, which then lead to nocturnal muscle cramps in both calf muscles for around a year, that was unbelievable agony which always left me in tears of despair. Then came the falls, SEVENTEEN in all, many injuries as a result, along with total embarrassment, loss of pride, freedom & independence !! I manage somehow to remain positive 90% of the time, the other 10% is filled with frustration, disappointment, floods of tears, wanting to go to sleep & not wake up, anger at why this ghastly disease came to me. I have always enjoyed my freedom & independence, & travelling the world with my husband, but I never had any intentions of my husband being my carer. At the moment I am still mobile (albeit slowly) with the aid of my walking frame, & I can still speak, also slowly. I have had to dismiss all of my life's hobbies, I can no longer write, which I have always loved, I can no longer use scissors so crafting has had to be left, & cooking which has always been a passion is definitely a no no. I occupy myself daily by typing (also slowly) my memoirs on the computer. The day after diagnosis I documented all instructions for end of life care & beyond, also made a will, & Power of Attorney, just in case I DID lose my voice. I left no stone unturned, even contacting funeral directors. I guess it helped me cope with diagnosis, & of these were essential topics to be covered. I'm glad I did because my family will not have to 'wonder' or 'worry' what I wanted, it is documented for all to see.

[Ellie]

Hi Maid & welcome to the Forum, but obvs sorry you had to join us

I think most of us have been through your range of emotions, and some!

I hope by now you have good support from local OT, Physio, Community Nurse and/or MND Nurse?

You've broken the first rule of having an MND 17x - that all important "Do Not Fall" rule, but as most members break this rule, so you'll fit right in it seems

Several members have written memoirs, poetry etc. and have found it a positive experience, so I hope you will too. Are you using a convential keyboard to type? Have you predictive text? I wonder if typing can be made easier for you, that's all.

I usually wouldn't mention this on an Introduce Yourself thread, but given you mentioned you've your final prep done (I also am organised in that way) I wonder if you know about brain & spinal cord donation for MND Research? I don't need you to answer but you may wish to ponder it.

Love Ellie.

[Terry]

Hi Maiden and welcome to the forum,

Seventeen falls, I can't even count that high. Hope that you are safe now. Guess that you have read my tip about putting a gallon of water in the rollator for extra stability.

Good to hear that you faced things and got things sorted early on, it means that you faced it and moved forward.

If there is any not so bad side of Mnd, your progression seems fairly slow. Do you know what type of Mnd you have?

Yes it's horrible not being able to do practical things.

Please feel free to ask any questions or share things with us.

Best wishes, Terry

[Barry52]

Hello Maidinkent and welcome to the forum.

I admire your courage to do all the practical things soon after diagnosis. It took me a while longer to get around to it as my head was in a bad place. Not anymore since I live for today and plan for tomorrow.

Ellie is right when she talks about avoiding falls however all you can do if you want to keep ambulant is concentrate on every move you take and analyse risks. Having said this you are probably well practiced given your record.

Best wishes,
Barry

[Iron Will]

Hi all, I was diagnosed with MND September 21st 2018, after 20 months of a living hell. In 2016 I noticed a very weak left arm, which then lead to nocturnal muscle cramps in both calf muscles for around a year, that was unbelievable agony which always left me in tears of despair. Then came the falls, SEVENTEEN in all, many injuries as a result, along with total embarrassment, loss of pride, freedom & independence !! I manage somehow to remain positive 90% of the time, the other 10% is filled with frustration, disappointment, floods of tears, wanting to go to sleep & not wake up, anger at why this ghastly disease came to me. I have always enjoyed my freedom & independence, & travelling the world with my husband, but I never had any intentions of my husband being my carer. At the moment I am still mobile (albeit slowly) with the aid of my walking frame, & I can still speak, also slowly. I have had to dismiss all of my life's hobbies, I can no longer write, which I have always loved, I can no longer use scissors so crafting has had to be left, & cooking which has always been a passion is definitely a no no. I occupy myself daily by typing (also slowly) my memoirs on the computer. The day after diagnosis I documented all instructions for end of life care & beyond, also made a will, & Power of Attorney, just in case I DID lose my voice. I left no stone unturned, even contacting funeral directors. I guess it helped me cope with diagnosis, & of these were essential topics to be covered. I'm glad I did because my family will not have to 'wonder' or 'worry' what I wanted, it is documented for all to see.

hi, your story could mirror my own, cramps, falling and so on. if I had my time again I would get things in place to help in the practical things sooner. stair lift, scooter and so on. my legs went very quickly and really I should have reacted quicker than I did to avoid the falls. make sure you ask whoever you need to for help, doctors, friends and of course your husband.my wife has been incredible from the outset. she has a full time job and cares for me. I have been very lucky, since my legs went I have progressed very slowly, I don't accept the timescales laid out for MND, I am going to smash them. I still work 7 days a week and I aim to continue to do so. I would say to you, and anyone with this illness, get a mobility scooter (i'm now in a power chair), get a mobility car with a ramp and whatever else it takes for you to continue as close as possible to your every day life before diagnosis.it takes so much pressure off your care/ family.

good luck and don't forget we are all with you and all in the same boat.

[Lynne K]

Hi Maidinkent, sorry that you've had to join us. You sound very organised and strong willed to get all that planning done. I haven't done any of it yet. I'll have to take a leaf out of your book sooner, rather than later.

About your 17 falls: I can relate to that. I had at least that many on my last camping and mountain walking holiday.
I also did craft things (dressmaking, machine knitting and 5 needle sock knitting) so I can relate to your loss in that area too.

I still do a little cooking but my hubby lifts hot dishes out of the oven for me. I struggle these days with the preparation, which I used to enjoy. So my husband bought me frozen chopped vegetables to make it easier for me. But he does most of the cooking.

I'm at a similar stage regarding a walker, but outside that's become too dangerous. In the last month or so my husband has been pushing me in my light weight portable manual wheelchair. I hope that you have all the help from services that you need.
Lynne

[Sheila]

Hi maidinkent
Welcome to this very helpful forum. Just like you I miss doing everything that I use to enjoy, like writing, using scissors,it is so frustrating.. I never wanted my husband to be a carer, I am 9 years younger than him. It is true what they say you never know what is around the corner. I try to take one day at a time.
Take care
Sheila.

[shrew]

Welcome Maid. So sorry you have to join us. I am a carer for my Husband who who was diagnosed last july. first symptoms for him was arm weakness, a tremor in one arm, lack of grip etc, then morning headaches. He had cramps, but they arent new to him. He's always suffered from cramps. our eldest daughter at 31 remembers him taking quinnine when she was small

[Annb]

Hello Maid
I can understand your present frustrations and fear having recently being given your diagnosis.
I was diagnosed in August 17. I went for a carpal tunnel test and received my devastating news at my local hospital who just waved off to my car to return home to my dying husband for whom I cared. He passed away six weeks later. I was in total shock having to deal with both things at the same time and the disappointment that after more than three years as as a Carer I would not be getting my life back. I can fully understand your frustration at losing the hobbies you have loved all your life because that has happened to me too. I have lost the use of my right hand and my left is getting poorer. I live alone now with carers coming daily to shower and dress me. I am unable to cook and most of my meals are either cold or microwaved. I can only stand and as I cannot walk I use an in/out power chair. My independence has always been important to me and although I have family to help me I have found ways to do things for myself. It is the small things that give me pleasure now. I stress less about things I can't change. I have also learned to ask strangers for help when I am outing about and stuck. They are always delights to do so. A smile works wonders!
It does takes time to adjust and you will still be in shock. Give yourself time to accept your situation and try to stay calm because stress is very bad for MND.
I have recently discovered Dial-a-Ride in my area which allows me to go out on my own occasionally. It has taken me a year to sell my house and I will soon be moving to an adapted flat in an Independent Living complex where I will be on one level. The summer is coming and I will be able to go to my local park. It's the small things that matter to me now.
Try to enjoy the simple things that you can still do, it will help.
Take care
Love ANN xxx

[Annb]

To those who know Charles.
He is quite poorly at present and feeling very low. I am sure he would appreciate some cheery PMs
Ann

[Sueb]

Hi Maid

Welcome to the forum. I care for my husband who was diagnosed July 2014. His shoulders and arms were the first parts of his body that he had problems with. I can understand your frustrations with not being able to do the things you’ve always done. Steve gets very frustrated. He loved DIY and had done most of the work on our new extensions, he was on the roof putting tiles on when he couldn’t let go of the hammer. He and the doctor thought it was carpal tunnel, which after having both hands done they found it was MND. He also has written his Dads story, his own story up until we got married and wants to complete part 2. He writes poems too and this has helped his mental state. He did karate, long distance walks, he was never still. He now uses eye gaze to write, use the internet etc. He had many falls and it is something you need to be very careful off. He’s now in a power chair and uses his foot to control it.
You have been very proactive in getting things organised. We have done something things, power of attorney so I can sign things has Steve can’t hold a pen any longer., wills etc.
Sue

[Maidinkent58]

Thank you all for your kind words and advice. I no longer walk, I figured in March of this year it is far safer to stay in my wheelchair all day. Although I can still stand if I'm on my 'Sara stedy'. Also, I now wear a neck brace, as it is now impossible to hold my head up. My MND team are extremely helpful, as are my husband and children. My daylight hours are spent educating myself on MND, and continuing with my 'typed' account of Life with MND, even though I can now use only one finger to type. I am hanging on to this for as long as I can !! I have 'written' enough to fill a book, it is this that keeps my head above water, in the hope that one day it might help others. Also, part of my ultimate plan is.......along with all my literature, is to give others the 'greatest gift of all', I am now a registered NHS donor. I have informed my nearest and dearest that I wish to help others to live, not one person........but as many as possible. I want to leave a legacy when my journey ends.

[Ellie]

Great to hear you're positive and getting on with things.

Re typing/PC use: have you had any contact with Speech & Language, OT, Assistive Technology, Environmental Control/Services about your difficulties using a keyboard? There are other ways to use keyboards which should be quicker than using one weak finger - I use eye gaze, for example.

Love Ellie.

[denise]

Hi maid
nice to meet you. Nice people on hear. We talk, laugh, rant and share all ķinds of things. I hope we all make you feel welcome.
Denise xx

[matthew55]

Hi there, yep we are all a little nutty in here 😉