Finally ALS diagnosis

[Just J]

Well, finally we have diagnosed of PLS. No surprise here but I guess when you finally hear it and its reality it is a bit of a shock to the system. My husband got the diagnosed on Jan 13. The doctor is going to put him on Rilutek b/c his progression has been insanely fast since May of last year. Went from using cane in September to walker in November, now cannot go out of house without wheelchair. He is no longer able to drive, hands have lost fine motor skills, gripping a glass of water is a bit touchy. Last EMG in Sept 09 was clean.

So I am replacing our stoneware and glassware with plasticware! I am a gourmet cook and have always been against plasticware but you gotta do what you gotta do. :grin: Safety first!

Fortunately my husband is still working from home but we've moved the office to the kitchen rather than our 2nd floor loft. Master bedroom is already on main floor so that helps. I feel like he could really use a scooter but I don't want to get to these things sooner then when we truly need them. Meaning I am happy that he gets a bit of exercise moving about the house with the walker. I know this is exhausting for him at times but I want him to get the exercise since PT was too exhausting!

Anyway, we just live day to day hoping its a good day but knowing tomorrow may not be so good.

Thanks to everyone on this sight. You've been more helpful these past few years then you can know.

 

[Zaphoon]

Re: Finally Dx

Well, here is a hearty welcome for your husband into that illustrious, neurological winning lottery club of those diagnosed with PLS! (odds of 1 in 10 million)

I'm sorry his progression has been so fast. It makes me feel bad for being such a slow progresser.

Zaphoon

 

[seand777]

Re: Finally Dx

Hi Just J,

I am sorry to hear about the final diagnosis and to hear how rapid his progression is. That must be very scary to see and I must say your support as a spouse is phenomenal. People might not tell you enough but it's true. I am happy that your husband finally received a proper Diagnosis because it is important to have a name to the Monster that has caused some panic and havoc. I think any diagnosis helps with the closure of facing such ailment and also to provide any treatment available specifically for that type of disease.

My fingers are crossed that it does not develop to ALS in the future.

If you need anything or just need to vent, please let us know. We are all here to help!

Best Wishes

Sean

 

[shelleynshaggy]

Re: Finally Dx

J -
It sucks when those threads of denial snap one by one. Everytime I think their gone it seems something else sneeks up and snaps one I didn't know I was holding onto.

I too found plasticware useful - haven't replaced the dishes yet - but I bought a set of big "chunky" cups this summer from Walmart for about $1. They work great - he seems to be able to grip them better and they are husband & kid friendly.

 

[MtPockets]

Re: Finally Dx

I know it is hard to finally get a diagnosed. At least some of the mystery now may go away, but it does now change anything for your husband. I'm sorry to hear he is progressing so fast.
As a husband with ALS, I just want to thank you for being there when your husband needed you the most. These diseases are scary enough to deal with without loving support.

 

[DBowman]

Re: Finally Dx

Y'know...my walking went downhill quickly, too, in just a couple of years- from a cane to a walker for stability over greater distances. And I had ALREADY started Rilutek. But, I keep moving to try and "exercise" that connection between the brain and body part.

For small distances I may "wall-walk" or move along taking hold of this or that...I can shuffel(toddler-like) without holding on to anything but for only a few feet 'cause I don't know if might get a "glitch" and buckle momentarily.

God bless the both of you!
Diane

 

[Just J]

Re: Finally Dx

Diane, my husband went from cane to walker in 14 months. He cannot do anything without the walker. He is just too unstable on his feet. That's just for moving about the house. We must use a wheelchair outside of the home these days.

Doc from Johns Hopkins followed up today and is suggesting to turn my husbands case over to doctors at their ALS clinic.

 

[tajmom]

Re: Finally Dx

Just J, I go to the ALS clinic at Hopkins and can't say enough good things about the wonderful staff there. Your husband will get excellent care.