my first post - steve

[steve]

hi everyone
my name is steve. i was born in 1951. i was diagnosed with als/mnd summer 2019. my wife insisted i go to the doctor but i just kept saying i was alright. eventually i gave in and we went to see a doctor (we live in portugal) and he telephoned the hospital and we did get to see a doctor very soon. at first we thought it was parkinsons but then we received the als/mnd diagnosis. it was a shock but we decided to take every day as it comes and hope for the best. unfortunately the virus put an end to all of our hospital appointments. feeding tube, help with breathing came to an end. an appointment for august has arrived so we are starting to feel more hopeful and less alone. my problems started with the tops of my arms constantly shaking and then problems with my right hand and then the left. i find it difficult to use cutlery, pick up a cup or plate. getting dressed can be very difficult. sometimes i have problems swallowing.i am constantly tired. exhausted all the time. i wake up exhausted. if i could just have some energy to do some exercise it would help. one good thing is i do not have any pain at all. it would be nice to hear from everyone.

[Elvisfan]

Hi steve I'm tecently diagnosed mine started speech issues told it was rhinitis and post nasal drip finally got referred to neurology..my hob has gone as I can no longer be a special needs teaching assistant but I'm nearly 59 so time for rest anyway and spend time my family I have limb issues now both arms worse one left..I have same issues wth cutlery dressing is a stressful time but have husband to help or daughter when shes here ..I have git some aids to help open bottles etc but had no one visit at all due to covid since diagnosis not even seen consultant soiled ti him once on phone. I find the tiredness is wth me all day ....getting outside takes my mind off it but I always feel exhausted doing the smallest of tasks
Do you get very breathless too..

[Elvisfan]

Apologies steve for some typing errors in my post

[Ellie]

Hi Steve and welcome to the Forum - I don't know how I missed your post, sorry for the late welcome... (Thank you Elvis for bumping the post)

Have you access to an OT (occupational therapist) where you are? They assess how you physically cope with daily living and suggest (maybe provide?) equipment to make daily living easier. And an SLT (speech & language therapist) to give you tips how to swallow safely as you await a feeding tube. If you struggle to eat, I know myself that it's often easier to cut down on food but this only makes us more lethargic. ALS is a hungry disease which needs calories!

help with breathing came to an end.
i am constantly tired. exhausted all the time. i wake up exhausted.

Do you mean you had a breathing machine and it was taken away? It does sound as if you could benefit from using one, it's a pity you must wait until August for help - any hope of an earlier appt, I wonder.

Take care.

Love Ellie.

[steve]

hi elvisfan
no i dont get breathless. like you i love to be outside. it does take my mind off everything. i do like to go out to cafes but when eating out i do struggle with some foods. not so much with eating more like a problem trying to use cutlery or say trying to keep hold of a burger in a bun without it going everywhere. i also find it difficult to bring a cup or glass to my mouth without spilling it. i know i shouldn't smoke but trying to roll a cigarette is becoming a battle too. shaving is taking my like into my own hands! my wife helps with a lot of things. as for family they are all back in the UK and we have no idea when we will see them again. thankgoodness we saw them in October, christmas and february. i was supposed to be seeing an occupational therapist just before the virus changed everything and the same with a doctor who wasn't happy with my breathing and wanted more tests and that was when i was going to see about a respirator. i could try for an earlier appointment with the hospital doctor but i am not sure that will happen and the new appointment with an occupational therapist isn't until the end of october. i do love to listen to music. i can focus on that and it takes the nightmare away. i am trying to be positive. if having this wasn't bad enough having the virus turn up was far from helpful. talk about hit you when you are down!

[steve]

hi ellie
i think i replied to most of your queries in my reply to elvis. i did have a chance to see an occupational therapist way back - seems like a lifetime ago. it was early morning appointment and it takes us 3 hours to get to the hospital. thought about staying in a hotel but the virus was kicking off and the idea of staying in a hotel room was not a good prospect so we cancelled the appointment but i do think it was going to be cancelled by the hospital anyway. i do find i am going after sweet food, which is unusual for me. my wife keeps telling me off that i need good healthy food not sugary rubbish. i can still eat but sometimes i have a coughing fit when something hasn't made its mind up which direction it is going in. i will feel better when i can see a doctor again. this virus has pushed the rest of us into the background somewhere. nice to hear from you many thanks

[steve]

hi dont worry about typing errors. we all make them. i guessed the bits that you got wrong.

[Doug Carpenter]

Hi Steve

Sorry this welcome is a bit late. I haven’t felt too bright recently.

I just wanted to follow up on the eating part of your post. I’m not surprised you’re going for sugary things. Your body is seeking calories. Your wife is also right in that you must eat a healthy diet – for all sorts of reasons.

MND is a notoriously “hungry” disease. It’s a bit counter intuitive – we might think that as our muscles shrink and mobility decreases we need less fuel, less food. Absolutely not!

May I suggest that you start monitoring your weight, with the aim of making sure it doesn’t seriously decrease. Try to eat a healthy diet – all that lovely Portuguese fish – but also make sure you get enough calories as well. There are nutritional supplements in the form of high calorie drinks specially formulated to include all the vitamins and minerals we need. Ensure is one such brand.

Talk to your GP or MND clinic; most will have a dietician attached.

The MNDA has a useful book about nutrition and MND

https://www.mndassociation.org/app/uploads/2017/05/Eating-and-drinking-with-MND-final-web-PDF-2017.pdf

All the best

Doug

[Deb]

Hello Steve,

I just wanted to say a warm welcome to the forum from me. It must be so hard to be unable to access the support you need because of the pandemic and you must really be missing your family. I have always disliked hospital appointments ( doesn't everyone?) but I find I am missing going to the MND clinic. I always have questions saved up and I find it reassuring because everyone understands. Video calls are just not the same.

Before MND I always tried to eat healthily but when I was diagnosed I saw a dietician who told me to eat what I fancied ( within reason ) and to make sure I had enough calories. Eating healthily is important too and I find eating little and often suits me best but its different for everyone.

Take care,
Love Debbie

[Lynne K]

Hi Steve, I too only just found your post, sorry for my very late response. A warm welcome to you. Your post from sunny Portugal brought back lovely memories. It too made me think how you are coping with the narrow slippery pavements? I struggled 3 and 4 years ago before MND/ALS really took hold. I’d had symptoms in my balance and legs for a while but was still walking (the second year using walking poles).

I hope that your health service is good and post Brexit they’ll still care for you. Or do you have plans to move back to the UK. Am I right to assume that you are an immigrant to Portugal.

I’m still just about wobbling around our home with my 4 wheeled walker. Outside I have to be in a wheelchair. My hands are dodgy, especially the right but I’m mostly independent dressing. My husband (Steve too) helps when I’m stuck. No other help needed yet, although I recently had some useful tech gadgets installed and was loaned a stand for my iPad so that I don’t have to keep hold of it. Housemate is on my iPad and some of it on my iPhone. With Housemate I can turn some lamps on, operate the tv using either my fingers or an infrared headset attachment. I was given these early so that I can practice with them before my hands stop working.

Good luck for getting earlier appointments. I have 3 monthly appointments at the MND Clinic. Recently these are WhatsApp Video or the NHS’s own poor quality software. I can email my neurologist, my OT, Speech Therapist and the Clinic’s Specialist Nurse if I need anything. Wheelchair Services ring me regularly to ask if the wheelchair is ok and still offers enough support. I couldn’t ask for a better service.

Bye for now from another who takes each day as it comes, Love Lynne