My wife has been diagnosed with MND-ALS + FTD

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Dave Kerwood

Senior member
Joined
Nov 29, 2015
Messages
717
Reason
Lost a loved one
Diagnosis
12/2014
Country
UK
State
South Yorkshire
City
Barnsley
Good mornng

This is my first post here, will keep it short and to the point.

My name is Dave (52)

December 23 2014 my wife (Julie) (68) was diagnosed with Frontotemporal Dementia and Motor Neurone Disease (ALS). Devastating News.

I have been a full time carer from the start as I were self employed working from home. Sadly I could no longer do both so I gave up work on the 12 Dec 2014 to be able to dedicate my life to my wife 24/7.

Although on the FTD side was expected which played a prevalent part in our lives for approximately 6 years the MND-ALS was a bit of a shocker.

The reason I have come to this forum is that I would like to hear, help and share thoughts, ideas, information with similar people that are caring the same types of illnesses my lovely wife unfortunately has

Thank you (in advance)

Dave
 
Welcome, Dave. I'm so sorry for the devastating diagnosis.

You'll find several people here with experience caring for FTD/MND. Feel free to share, ask questions, or just rant.

--Mike
 
Welcome, Dave. I'm so sorry for the devastating diagnosis.

You'll find several people here with experience caring for FTD/MND. Feel free to share, ask questions, or just rant.

--Mike

Thanks Mike
 
Sorry to welcome you here, Dave.

We have many European (and Australian!) members but be aware that there is also a UK based MND forum.
Not trying to chase you off, just thought you should know. 8^)
 
Thanks Greg...

I am a forum member of the UK MNDA too. But there is not a lot of folk that have both FTD + MND (ALS)... In fact I think I am the only one there that I can find. All have MND but not FTD hence the reason for me stopping by here...

Dave
 
Hi Dave
My mum had the combination and she began with dementia My sister and I have "just" MND. I am sorry for your situation but there are several of us here who know the path. Welcome ( sadly)
 
Thank you Nikki...

Although the UK MNDA forum is a great forum I have not found a single person that has both the ALS/MND FTD combination. There are great MND forums and then there are great FTD forums but not the both together, this is the first forum (recommended by a friend) that I have found that covers both.

I have found it nigh on impossible to communicate with folk that have both diseases or carers of a loved one that know about both diseases so Have sort of felt alone and adrift for the past 11 months.
 
I'm so truly sorry to welcome you Dave.

My husband Chris had FTD and was bulbar onset MND.

He was rapid progression, so was gone 11 months after diagnosis.

The FTD was far harder for me to deal with than the physical issues as you would know.

I noticed personality changes starting about a year before the very first tiny bulbar symptoms.
 
Hi Tillie.

I do realise that life is short with the onset of both, Julie (my wife) first started to show the signs of dementia 8 years ago, very slow at first but I never suspected MND (I thought that happened to other folk), anyway, I had to take Julie to the Dr's to find out what was wrong with her and after nearly a year of every test imaginable she was diagnosed with ALS/FTD. I were told the diagnosis the day before Christmas Eve last year (2014) over the phone.

I kept it quiet until after the New Year as not to spoil anyone's holiday's, this was a good idea I thought.

Anyway, to cut a long story very short, Julie has declined so rapidly since the diagnosis. The FTD has basically rendered her a child now, unable to do anything for herself, unable to make decisions, being very inappropriate in and out of the home and the such like. The ALS has also affected her speech and swallowing (on fully puréed food now which I make from normal food), her muscle wastage is evident on a weekly basis, she has lost so much weight, about 10% of her body weight in the last 3 or 4 months.

Julie has fallen so only walks outside if attached to my arm but she can only manage 100 meters, further than that we take her Wheelchair ('Chariot' as she like to call it).

The only blessing is that Julie thinks that there is nothing wrong with her at all, this is the FTD side of things. Julie is not in denial, she simply does not recognise that there is a problem so I never mention it. Julie even denies that there is anything wrong with her when we visit the hospital to see various Consultants etc.

I have set up SALT, memory services, dieticians, FTD Consultants, MND Consultants, Physiotherapy, Occupational Therapists... The list is endless. Julie is getting the best possible help that I can give her.

It has come to a point now that we are having to move to a bungalow from this house with stairs, hopefully this will happen very soon.

Anyway... Not wanting to bore everyone to sleep I will leave it at that for now.
 
If I may add...

The saddest part of all of this is that many family members have their head buried in the sand, rarely visit or phone even after nearly a full year from Julie's diagnosis. On the plus side though, Julie with her FTD does not remember when they last visited, however, for myself though it is very lonely.
 
I am on my own now as Julie has just been picked up for her 'Day Centre', she goes twice a week (Mon & Wed)... Now to do the housework, washing, ironing, floor & dishes... Got music on loud... Today is my day off...
 
Welcome, Dave. I'm glad that you found us. You will find information and friendship here, and we will know how important both are.

My husband is approaching two years since D-Day (diagnosis) with ALS. No FTD, but plenty of people here deal with or have dealt with both.

Enjoy the loud music and freedom to clean today!

Becky
 
Welcome, Dave. I'm glad that you found us. You will find information and friendship here, and we will know how important both are.

My husband is approaching two years since D-Day (diagnosis) with ALS. No FTD, but plenty of people here deal with or have dealt with both.

Enjoy the loud music and freedom to clean today!

Becky

Thank you Becky...

I spent 8 hours last night reading and reading topics within this forum, I read that much that I forgot to go to bed. HAHAHA

Music has stopped, chores are done, Julie is at Day Care and I am having lunch whilst watching a film on Amazon Prime (Hannah). It is 12:15 here in the UK
 
Not sure how I broke this forum but I am unable to post, something about:

Thank you for posting! Your post will not be visible until a moderator has approved it for posting. You will now be taken back to the forum.

Is this normal?
 
Yep- we've all hAd it happen. Just means you used a "trigger" word that sends it automatically to moderation. We all would love a list of those trigger words but..... Welcome and hang in there Dave. Donna
 
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