Hi

[Gillette]

Serenity, I simply looked back to when I was first diagnosed and how it felt having all these people passing through. I am very fortunate as I have a terrific community team, who liaise with my MND clinic and both those teams work closely with tbe ventilation unit where I am currently imprisoned! I sincerely hppe you and your husband will cope well with all of these visitors. Please don’t forget that we are here to help and support you both, should you need us.

Sending more hugs as you can never have too many! ((((()))))

[Serenity]

OMG Dina that helps more than you can know. you are wonderful...hugs you back.

[Gillette]

Dina,
I would love to ask questions but I feel like I dont know what to ask. I just wish I could wake up and find out this was just a bad bad dream.,
sending love and hugs
Serenity

Try not to worry about what questions you should ask. Here are some basic pointers for you:
Name
Job title and what it means
What they can do for your husband and you
Contact details for when you need them
Their working hours (in case they are part-time).

It might be a good idea to have a notebook where you keep information about MND so that you only have to look in one place to find information

If or when your husband needs help or equipment, ask the Occupational Therapist or Physiotherapist first. You can easily end up spending a lot of money and buying equipment that isn't really appropriate for his needs.

I hope the above helps, Serenity. In the meantime, lots of hugs from me, too.

[Serenity]

Hi Deb,
thank you for your warm and huggy welcome sending warm huggys back, yes since contacting the hospital the social worker has started organising people to visit us. lol i am even scared about that, I really don't know is if I will ever come to terms with this. I seem to have infinite tears lol
again thanks for the hugs...it really helps knowing people care
Serenity

Dina,
I would love to ask questions but I feel like I dont know what to ask. I just wish I could wake up and find out this was just a bad bad dream.,
sending love and hugs
Serenity

[Gillette]

Hi Serenity,

It can feel overwhelming when your home starts being visited by what seems like a never-ending troupe of healthcare professionals. If you're unsure what they do or what to expect from them, just ask. Ask them whatever you want or need to: it may not feel like it, but they are there to help you both. As for the OT, he or she could be the most useful member of your husband's community healthcare team. If there's a problem, the OT should be able to help get it sorted.

[Deb]

Hi Serenity, I would like to wish you a warm and huggy welcome to the forum. I am so sorry for you husband's diagnosis, it must have been such a terrible shock with no time to prepare so it's no surprise that you're struggling.

After I was diagnosed I was totally overwhelmed by the amount of health care workers visiting with their very well meaning advice. It took me a while to come to terms with it and look ahead to what i might need in the future and I needed to step back, initially.
It does calm down and I now know who to contact for advice or support.

Sending you and your husband big hugs and thinking about you in these early days.
Love Debbie x

[Serenity]

Ellie,
I am almost dreading the procession of health care workers...but I have contacted the hospital who is arranging an OT visit to our home. This disease is very confronting and I am overawed by your bravery and that of others on this forum.
Sending HUGE hugs.
Love
Serenity

[Ellie]

It's only natural you're overwhelmed and struggling, Serenity - the fear of the unknown is horrible.

I don't wish to overload you with information right now, but your husband does need input from an Occupational Therapist (OT) to keep him safe (from falling) by providing appropriate equipment, such as your borrowed aids, and to make his day-to-day life easier.

Now your husband is home and has mobility challenges, the OT should be the first healthcare professional he sees. The others can wait until the emotions aren't as raw - it can be very daunting to see a procession of people and hear what they've to say

Big hug.

Love Ellie.

[Serenity]

Dina,
You are a true gem...humor... even with what you are going through...I think, considering, that tears are normal... I still think you are courageous. I am sending huge hugs to you and wiping the tears away (with my slightly used grotty tissue}.

[Serenity]

Terry,
Hi...thank you for your very kind welcome. Yes it has been a huge shock and I feel totally lost and scared, my husband has always been the strong one now I have to learn to be strong for him...I wish I could take it from him.....

He has a VPAP and a devise to help him cough...his CO2 levels were so high.
hugs

Mick,

Yes, his breathing scares me and him...We have two grown up children but they have their own lives and small children to cope with...it is hard on them all...we only lost my husbands dad to cancer last year and now this on top of that has shattered them all...

I have taken your advice and contacted the MND association today.
Thank you for your good advice ...huggles

Lynne,

Yes it was such a shock and so fast. No, really other than the VPAP machine and tube in the stomach for when he needs it we had no preparation.. He was sent home. I am just so happy he is home. I found his dads shower chair and walker and a friend loaned us a toilet seat that is raised and has handles. so he can get up off the toilet. I am still spinning and trying to do what I can.

Sending big hugs and thank you.

Ellie.
Thank you for your kind welcome. I love the big hug you sent me. No he doesn't have the trache and vent now and is breathing on his own...Yes the shock was horrific and I seem to not be able to stop crying. This disease is horrible and seems to attack the most wonderful and kind people. I hope that one day I can stop crying and feel some normality. Hugs do help and hopefully, with new friends and acquaintances who may become friends on here, we can all help each other, even if it just removes the feeling of isolation.

Thank you again and huge huge hugs. xx

[Gillette]

Hi Gillette.
You sound so brave and yes I felt so alone and crippled with fear. I am sending huge huggys to you and thank you for your kind welcome.
I hope your hospital trip is not too horrible hugs.

Hi Serenity,

You must have me confused with someone else! I'm not brave. I'm just trying to get through each day without flooding the whole hospital with my crying! I did offer to sell my tears as saline solution but the hospital didn't want them!

Hi Lynne,

Thank you. Hope to see you soon.

[Ellie]

Hi Serenity and a warm welcome to the Forum nobody wants to join.

Sorry about your husband's diagnosis. The initial shock can be very difficult to take on many different levels but, with time, it does lessen and 'normal life' takes over again.

Does hubby still have the trache & vent, or is he breathing on his own again?

I see you're a hugger, so sending you a giant one .



Take care.

Love Ellie.

[Lynne K]

Hi Serenity and Samkl,
I'm sorry that you both have family with this horrid disease.

Serenity,what a shock! Your husband has had an unusual start to his MND journey. Hugs for you both. It must be awful to have this thrusted to you both out of the blue, with no time to think of it's possibility and prepare. Even those of us with time to read up and discuss our fears before the diagnosis, it was still a big shock and took time to come to terms with it. I bet that things are moving so fast that you can hardly catch your breath. I hope that all the help, support and appliances are in place before your dear husband is discharged.

Samkl, I hope that your brother also has adequate support for whatever diagnosis he gets after his tests.

Both of you, be kind to yourselves as well as your loved ones. MND has consequences far and wide. But on the bright side can bring out the very best of people and even bring people closer together. I'm not suggesting that it's a bed of roses but being kind to one another can get you over most trials and tribilations.

Dina,
Sounds good that you've got somebody with MND beside you on the ward. This ought make your stays more bearable, mutual support (even just a kind word) from informed new friends. Hopefully see you soon. Love Lynne x

[mickmac]

Hi Serenity

I'm sorry you're getting such a difficult introduction to mnd. I think most of us on here had a slower and gentler time at the start and that gives you time to get set up and cope when times are tough. Terry is right about the breathing. Getting a handle on that quickly should be the number one priority I would think.

Do you and your husband have much support from your family. Grown up children can help with lots of things and having them at meetings and remembering things as well as asking questions you forget to ask is useful. Parents and siblings can also help.

Get in contact with the mnd association and they can advise you on your next steps. And try and reach out to friends. They can be a shoulder to cry on and offer support at the same time.

Mick.

[Terry]

Hi Serenity and welcome to the forum;

Sounds like you're been thrown if the deep end and must be devastating for both of you. Most of us have a little warning but it still comes as a shock that can take a month or two to come to terms with it.

You mention that he was having breathing problems before hand, has he got any breathing machine at home and have breathing and blood gasses been completed?

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

Best wishes, Terry

PS:- Hi Samkl, I am going to open a separate thread for you so you get replies directly relating to you. I hope you don't mind.