New to forum

[barneyswife]

Hello All,
I have been reading all of your posts and gotten a lot of information from you all and am very grateful. Thank You!
Now it is time to get my head out of the clouds and face reality!
My husband was diagnosed with Bulbar ALS by two neurologists in the spring of 2013, then we were sent to Vancouver to the ALS Centre where we met with a leading ALS specialist that has been doing research on ALS for many years. He diagnosed Barney with Bulbar ALS and threw in Dementia!
As it is a minimum of 5 hours to Vancouver it was recommended that we see the ALS Specialist in a city approx. an hour and half from us. She is great!
My heart breaks for all of us.
Barneys speech is almost gone as far as understanding him, he writes everything out and it has almost become a game of charades trying to figure out what he is trying to say.
His tongue and lips are in big trouble. I make him heavy duty smoothies every morning, lots of homemade soups, stews and pasta dishes. He drinks at least one ensure a day.
The muscles are wasting in his hands, PROP is coming with a BiPap machine on Thurs., the calves in his legs are cramping and his balance is not great.
I have to say we have all been ripped off in the cruelest form!
Hugs to you all

 

[Barbie]

Hi Mrs. Barney,

Welcome to the forum. I know you would rather be anywhere else and you are right we are all being ripped off. ALS sucks for sure.
Sounds like you are working hard to keep his calories up--are they talking a peg tube yet? We have a lot of people here who can give you good info on both bulbar tips and FTD tips as well, and a whole section for FTD.

I am so sorry you have to join us here, but rest assured, you will get a lot of help and support from everyone.

 

[Annie's Phil]

A very warm welcome to you, though I'm very sorry you have reason to join us.

 

[barneyswife]

Thanks Barbie,
Unfortunately because of the dementia he refused the PEG.

 

[Santa joe]

So sorry you have to join us. You will find this forum a blessing with all the wonderful, caring and compassionate members. We are all in this together. You will find a wealth of information and support here.

 

[barneyswife]

Thank you Phil,
I appreciate your welcome.

 

[barneyswife]

Thank you Debbie,
Life has taken some strange turns in the last few years.

 

[ottawa girl]

Hello from Ottawa -

Welcome. Lots of support here for you here.

 

[affected]

So sorry you have had to join us, the place no one wants to join, and yet the best place to be for the needs we have.

I still feel nearly every day the shock of the diagnosis. My husband is also diagnosed bulbar onset, and I know that he has FTD, but it hasn't been diagnosed. The only reason is that I haven't sought out the diagnosis. He behaves well in front of doctors and I have worried a lot about 'calling him out' and having him tested, as he would resent this so strongly.

He has been on anti depressants for about 3 months now and they seem to have contributed to lessening his behavioural issues enough.

I feel he is heading now towards the end stages, so I accept that it is what it is and just try to take a day at a time.

I hope you find this forum as helpful as I do now that you are joining in. Good on you for taking that next step!

 

[zoohouse]

Welcome to the forum, and I am sure your husband is seeing the same doctor as my husband. Do you find Magna Bay a long way away from people? How are you handling the snow? I grew up in Blind Bay and it was wonderful in the summer, but a bit remote in the winter, but I know that that has changed a lot in 35-40 years. It is a beautiful place all the same. Maybe we can meet sometime. The ALS society of BC is excellent about lending equipment, as you probably all ready know.

Paulette

 

[patgayle]

Welcome to our family...sorry you have had to become a member. You have a long road ahead of you and probably the roughest trip you will ever take. The folks on this forum will help you avoid speed bumps, pot holes and have your back when accidents happen. My husband who has FTD has also refused feeding tubes and a bi-pap and I have only just persuaded him to let me use a suction machine, it is a different situation for every person but the same in other ways. As they say ... one day at a time. Feel free to express you feelings and problems here, it is good for you and what is good for you will be good for him.

 

[barneyswife]

Thanks Elaine,
Yes, we have to trust!
Thanks
Linda

 

[barneyswife]

Thanks Tillie,
Barney is also very mild mannered with the doctor and usually with friends and family. It is almost like he stock piles his nasties for me. I have found the best way to introduce new things (Bipap for example) is in front of family and he becomes very submissive to the idea.
My son ordered a lightening writer for him several months ago and it was wonderful as long as someone was here, it was like show and tell. Then it just gathered dust until someone else came up. I have a pretty strong feeling the Bipap will be treated in the same way.
Tillie it was great chatting.
Linda

 

[barneyswife]

Thanks Paulette,
I would love to meet with you! So sorry it will have to be under these circumstances!
Yes, living in Magna Bay is challenging especially now. The snow on the roads is incredible. Our oldest son plowed our road top to bottom yesterday. There is no way an emergency vehicle of any kind could have gotten up here.
Sending hugs!
Linda

 

[barneyswife]

Thank you for the welcome.
Keep telling myself I can do this, I am strong! Then find myself hostessing one of my famous pity parties of course my guests are me, myself and I.
Hugs
Linda