The Wicked Step Sister

[Katie C]

OK crash course on bulbar symptoms: bipap and cough assist already mentioned. Heavy duty blender... puree EVERYTHING.... and thickit or other thickening agent (available at your local drug store) to thicken thin liquids like water and juice. Small pills can be placed in a spoon full of applesauce or pudding rather than trying to wash them down with water. Larger pills can usually be crushed, capsules emptied then again mixed with pudding.. we used Ensure pudding, got a little extra nutrition into him at the same time. Be sure to check with your doctor about crushing or emptying. Sometimes they can even come up with an alternative form. Depression meds and anti-psychotics can help with the anger, and any obsessive behaviors.

Get as much help as you can... help with the house, the yard, caregiving....

All that being said... understand that compliance IS going to be an issue. Do the best you can and accept that it's the best you have to give.

If he will tolerate it, range of motion therapy can be very helpful.

Best piece of advice I was given at the beginning: Get yourself a notebook.. multi subject. I the first section I had a copy of the power of attorney and health care directive (get those ASAP if you don't already have them) On the first page I had Glen's Social Security number, Kaiser member number, employee ID number then phone numbers of the doctors, ALSA, company HR department, etc. Then label a section for medical... write down any questions that come up between appointments. A section for Insurance, a section for Social Security and a section for work related issues... disability, etc. It will help keep you sane.

We're here to answer questions ... hang in there!

 

[themommy]

Thank you all for pointing me in the right direction....My mind has been in turmoil since the diagnosis. Try to talk to the Dr.'s at the ER - they have NO CLUE what-so-ever.
There is really no one that you can talk to - that will give you the REAL answers and not hold back - the really important stuff. Or the really hard stuff....EXCEPT YOU GUYS....Thank you. I know it is hard. But without you all I would have no one who understands any of this....

 

[Barbie]

Amy, My husband and I go to the clinic in St. Pete. I have never been to the one in TAmpa but heard good things about it. I found them to be through and helpful. We use to go toMayo in Jacksonville but St. Pete is closer to Orlando and it became too hard to travel that far. I realy liked Mayo alot. we got all our equipment from Mayo so I don't know much about how st. Pete responds. I do know that the pulmo tested my husband at clinic and ordered a bipap for him right away with no hassles. (of course my husband sent it back!) One thing I like about them, it is easy to get scripts refilled and ordered.

My husband is 51--also was very healthy and active pre ALS. so sorry you have joined us here...

 

[panguinjen]

Amy,

You are on a rough road... So quickly! I have an expandable file with categories for the neuro, respiratory, pulmonary, nutrition, speech and hearing, social worker, physical therapy, insurance (do you have a case manager yet, ask for one to get approvals and coordinate benefits), the VA (if he's a vet this is a presumptive condition). I put all my questions in my phone and I don't leave til they are answered...the ALS organization may be able to help you with a lot. PLEASE take care of yourself... Lotsofhelpinghands.com is a website to use to coordinate friends so you can get a break! People here are amazing! Keep us posted about clinic!

Jen

 

[themommy]

@ Barbie - thank you! Thank you! Thank you! You know when I first called the Tampa ALS chapter - I talked to a woman over there - and she was plenty nice...So me - with my big mouth just flat out asked her - "Hey - is this Dr. Lara Katzin a quack or what? She is my husband's diagnosing Neuro - Do you know of her at ALL? Or is she just some schmuck?" Quietly she cleared her throat - and said, "Uh..noooo. She isn't a quack. She is OUR Dr. and the Director of Neuro at USF". Nooo...quack is not the word I would use to describe her at all.."
I laughed and said "Darn - I was hoping she was..." LOL! Ok - open mouth - insert foot....

At Jen - All good ideas. I will look up the website. Frankly the day to day management is daunting to say the least. It just wears me out. A month ago I was a pretty blonde woman - now I am just haggard - with big black circles under my eyes - because sleep is something I desperately want - but find it hard to come by.

 

[Toto's Dorothy]

Mommy,

I can't add anything to the information that has already been given. Welcome to our family just wished we could have met somewhere else. And like someone said, ask, ask and ask some more. There is always someone here who has gone through it.

And again, I'm sorry you have to be here. My prayers to you,

 

[themommy]

To toto's Dorothy - why do you take tramadols? You know originally I thought ALS was not supposed to be painful - (which is why I was in denial). Because my husband is in a lot of real gripping pain. He says its like a toothache - only in a larger area... Does it hurt you?
I'm sorry to ask such a personal question - but lets face it - it is personal. Very personal.

 

[susanf]

Educate yyourself as much as possible. I still get shrugs when I go. They never mentioned Riluitek to me at USF. I'm on the dex trial and by the time I learned about it (here on the forum) I couldn't go on it and still be eligible for the trial. When I asked why It wasn't mentioned they said they forgot. Empower yourself, be your own advocate.

 

[momap53]

Many report pain from the cramping and muscle spasms, joint pain comes into play when the surrounding muscle tissue atrophies and no longer supports the joint.

 

[Barbie]

Amy, our clinic is the Suncoast in St. Pete...USF was not open at the time we started there. Dr. Didio. LOL on the doctor slip up! They all think t hey are hot stuff anyway!

 

[cubcake]

When I started to read your post, my first thought was "where is Katie C?"

There is a ton of knowledgable people here, some are 'specialists.'. Ask, listen and learn. You are in excellent hands.

We, too, are bulbar with a side of FTD. Ask anything.

Peace.

 

[themommy]

Peace. Funny thing that word. Isn't it?
FTD has made my husband angry at everyone. It is crushing my kids - because not only is he dying - he is hateful to them. Their last memories are going to be that he was mean. And although they know it is the disease - it still hurts them terribly. My son has stopped eating. Sad? Oh my - you have no idea. When the cardio Dr. told me he UNDERSTANDS - I nearly flung myself across the bed and choked him myself. You understand? You couldn't stand one moment in my shoes. How dare you say those words to me!
Because truly they have NO CLUE...So stupidly they speak about things they simply do not know about. We have Hospice to help with the kids - a counselor - who is wonderful...But it doesn't take it away...sadly.

And peace be with you all too...sorry for the rant....it just sucks.....

 

[Barbie]

Amy, big hug comig your way. The FTD is icing on the cake...

You are doing the best you can, and it is good you have your kids in therapy. I hope your children will keep ahold of the good memories of their dad and not let ALS rob them of those too.

 

[themommy]

Ok - Sorry - I have stopped (for the moment) feeling sorry for us - and am trying to get on with the business of life. Thank you to all for helping me and letting me rant and rave. Clearly you all do understand - for each of you have walked in my shoes - in some form or fashion. I wish so much, for each of you, that it wasn't so. Honestly though - if it wasn't for this forum - I would be a total wreck. (I am sorta = but it would be way worse). At least I can write it down and get it out. Maybe help someone else who - like me - is trying to make sense of this entire mess and put things in some sort of order. Restore order to a chaotic disaster. Today I am going to go fight with the insurance company and disability....At least I will have some place to put my aggravation. Poor, unsuspecting, insurance company....;-)

 

[panguinjen]

Ask for a supervisor right off the bat, then have them get you a case manager so all approvals go through one person who know the history.... Write down the name of everyone you talk to...good luck today!

Jen