Recently diagnosed - Uhhhh!

[JackieC]

Hello all

My Mother (who is 86 years old) but still feisty and has all her wits about her (and some) ! has recently been diagosed with Progressive Psuedo Bulbar Palsy. I am of course doing as much research on this as is possible (as she truely is the LOVE OF MY LIFE and a really wonderful human being) and I wondered whether, as a beginner, there were any associations (in the UK) or sites I can go to or ANYTHING that will help her understand what this is (via me).

I am dedicating my time to ensuring that my Mother is well-informed (she is a realist and doesn't like to be kept in the dark) and in doing something that will help her with this be it drugs, support, information, absoultuely anything.

She had a massive heart attack 18 years ago caused by a coronary thrombosis. The doctors said that "IF" she survived "and it is 50/50 then she will be in a wheelchair"! Well they didn't know my Mum and for the last 18 years (with the expected maladies from suffering 3 heart attacks at the same time, one massive) she is still cooking her own meals (and mine when I go to visit her, which is often), cleaning her house, gardening and is still very mentally astute and lucid.

In the last 3 years her speech has deteriorated and is quite slurred now, this is obviously getting worse and it is frustrating the hell out of her. She has become a little withdrawn as she finds talking an effort and a bit depressed. The Doctors have told her that she "probably" has Progressive Psuedo Bulbar Palsy.

Can you help me help her more please.

Any advice, words of wisdom, information is VERY VERY VERY welcome.

Thanks

JackieC

 

[Blackpool]

Hi Jackie, I am new to this MND/ALS I just wanted to say hello and I am sure the well informed members on this site will be able to give you some good advice.It is great that you are so supportive of your Mum. I wish you all the best.

 

[rachelg]

Hi Jackie

So sorry to hear of your mums diagnosis.

My husband was diagnosed with Progressive Bulbar Palsy in May of this year.

We live in Somerset and so far the support we have received has been first class. We have the area respresentative from MNDA coming to see us soon and we also have a volunteer contact in our town.

We have a community matron who visits regularly and assesses Marks needs.

We will be having a community physio visiting us regularly to look after Marks chest.

Mark has a PEG tube fitted therefore he has regular visits from a nutritionist. We have a fantastic speech and language therapist who comes to our home and will be here next week training Mark on a lightwriter.

I don't know if we are just lucky in this area or if this care is standard throughout the uk. Marks consultant and GP arranged all this care.

Mark takes a variety of meds to ease symptoms and will be happy to tell you what they are if they might make your mums life a bit easier.

Mark is losing his speech, has difficulty drinking thin liquids, he finds eating anything other than soft moist foods practically impossible though does still try.

Welcome and I hope you get as much help here as I have.

Take care.
RACHEL

 

[Tfisher]

Hi Jackie,

My mom went to her first neuro about a year and a half ago and he was treating her for psuedo bulbar palsy, she went for a second opinion and the second neuro told her that psuedo bulbar palsy was not a diagnosis but a symptom and he diagnosed her with ALS.

Does your mom use a computer? If you can find an association that can provide a device for communication it might be best to get used to using something now. Hopefully you can find an ALS chapter to help, ours is amazing.

Good luck!