Mum just been diagnosed with MND/FTD - Sydney, Australia

[MartinB]

Hi everyone, I have just joined the forum after finding it following some googling.

My mum (60yrs old) got her final diagnosis last Friday here in Sydney confirming she has FTD/MND (the PBP kind).

Her symptoms of minor speech and swallowing problems first started in March of this year and is now at the point (approx 7 months) where she is very hard to understand and I am asking her to write what she wants to say more and more now.

I am still in the stage of learning about MND off the internet and will be attending an information evening next week at a local MND association.

Her neurologist basically told me that this FTD/MND form of the disease is like 'motor neurone disease on steroids' and usually progresses faster than MND/ALS on its own. Not sure what to believe at this stage but either way it doesn't sound good.

I have had many late nights reading about this insiduous disease on the internet and will be back on the forum to share my experience with mum's disease when I can.

Martin (Sydney, Australia)

 

[CindyRN]

Hi Martin, sorry about your mom! There is a great group of people here so if you have any questions, just ask.

 

[cubcake]

Hello Martin, and welcome. My husband has the same combination. I'm so sorry that we're here. Please PM me with any questions you may have. I'll share all I've got.

While this is awful, let me tell you about the GOOD part of this combination, that I've experienced. Because of the (Language Variant, or PBP) FTD, my darling husband is incapable of understanding that he has ALS or what it means to him. He knows he's not able to do the things he used to do (speak, run, work, even walk without assistance) but he has no idea where this is all leading. Even though he hears that he is dying. Even though he chokes on every meal. Even though Hospice is here every other day. He has no idea. And he is HAPPY! Every morning when he wakes up, I just give him a big kiss and a huge smile, and it sets his day on the right path. He smiles and laughs through his day. We continue to share great humor and many loving moments every day (although most times I think he's laughing AT me, rather than with me). He is content, has no worries or anxiety and I couldn't be happier.

I pray every day that he can pass with this same feeling of wellbeing that he has displayed throughout his illness. Will all of this place a little more burden on your Mom's caregivers? You betcha! But I would gladly carry a boulder on my back for the rest of my life to keep my beautiful man from feeling the annoyance of a pebble in his shoe.

Peace be with you and your family as you come to terms with this.

 

[pscheffel]

Cubcake, I have to say that my Mom is happy too! I'm over here scared like crazy and she just smiles. I never cry in front of her because I don't want to ruin her happy feelings, it is a blessing in disguise. I have asked her if she is scared, worried, hurt, etc. and she shakes her head no and smiles at me. At first thought I want to believe it's her being the protector and comforter that she has always been for me, but I know it's part of the FTD and ALS combo. I know each day is a blessing.
Martin, you have come to a great place for advice and support. I am sorry for your Mom's diagnosis.

 

[momap53]

Martin, I'm so sorry about your Mom's dual diagnosis. Please check our archives for more info or ask your questions as they arise and someone will try to help you find an answer.

The Forbes Norris Center produced a trio of excellent videos. You'll find them on you tube. It's called The ABCs of ALS.

Good luck to you and your family. You're not alone on this journey

 

[Katie C]

And the UCSF memory center website has a wealth of information on FTD. Somewhere in this section there are a lot of links to excellent information. And yes.. if you have specific questions please ask.. if one of us doesn't know an answer we'll certainly know where to direct you!

 

[vzandt]

Cupcake...I love your post. I'm glad your husband is happy.

 

[KrisS]

Welcome Martin, even though this is so hard to do, I hope this forum will be helpful to you in taking care of your mum (love the accent.) Cubcake put it very well. My husband is also ALS/FTD. He is basically the same as her pals, although I'm not sure I would say he's HAPPY but content for the most part. He has not gone through depression or anger or mourning. It does have it's benefits and I hope you can see any blessings there are with this double diagnosis. If you have specific questions, please don't hesitate to ask. You will find the people here a wealth of information.