Update on my PALS

[AlabamaGal]

We finally made it back to Vanderbilt MDA/ALS Clinic this past week. So many health issues for me and my hubby, not to mention overwhelming financial issues, had kept us away since May 2011. It is a 7.5 hour ordeal for us. He was diagnosed at Vandy and we are comfortable there. Anyway, after consulting with the neuro and the pulmonologist in regards to shoulder surgery (hubby fell and broke the head of his ride shoulder on his 50th birthday, Jan. 11), we have decided that surgery just poses too big a risk. His should is still displaced and not healed, but passive range of motion exercises are helping him make use of it some. His FVC had fallen from 78 last year to 63. I asked them to also test it in the supine position; they did and it was 48. So, finally they have prescribed a BiPap rather than the cpap he has had. The neuro still says my hubby's ALS is upper motor neuron dominant. She also noted multiple cerebellar issues and even considered an MRI, but after much discussion we all decided not to, due to expense and probable lack of treatment. She said his cerebellar symptoms may have a neoplastic cause. That stinks and I guess we don't really want to know. BTW, since his two week hospitalization in January, he has not been able to walk anymore. He can stand with a lot of support and pivot with lots of support.

 

[Toto's Dorothy]

I'm sorry gal,

You have been through it. I'm glad you're back.. so sorry about not having surgery. ROM is the next best thing. Do you have an OT that comes to your house? My PT has to do both because the company he works for doesn't have 1 in my area. Easier to dislike 1 masochist rather than 2.

Keep us informed and I will pray an extra prayer for your hubby.

 

[Toto's Dorothy]

Oh and I lost the last use of my only limb on November 8, when I suffered respiratory distress and my heart stopped. Husband swears its because I had gotten sick and couldn't take my meds, I thought if anything it would be from the lack of oxygen. I find this disease under the No Rhyme Nor Reason category.

 

[Poet Chistopher Robin]

|You and your Husband have certainly gave every sufferer something to think about there, I’m persistently losing balance more and more and keep saying to the wife I need to start using my power wheel chair in the home.

She thinks I am giving up by not wanting to hobble about any more but what choice have I got. I don’t want to end up like your husband with broken bones or limbs on top

I hope that a myriad of angels bless you both and thank you

 

[joni51]

From one Ala gal to the other, Bless your heart, you and your hubby..heck the whole family have been through so much.. It takes a lot to be that strong

 

[momap53]

Keeping you in our thoughts and prayers.

 

[DeansWife]

From another ALABAMA gal, I will keep you and your PALS in my thoughs and prayers. This disease is certainly no picnic!

 

[beckysuenc]

So sorry you both are going through so much. Hopefully things will ease up soon.
My prayers are with you.
Beckysuenc

 

[Judith Ann]

Prayers!

Judyd

 

[brooksea]

Good luck to you and your husband, bama. This disease does not make anything easy. I hope his pain can be controlled with the ROM exercises. Please take care of yourself.