Finally confirmed...

[elemkay80]

Hey guys,

So after what has felt like the LONGEST 2 months on the planet, I finally had my clinic day at Duke for my 2nd opinion, where Dr. Bedlack has confirmed it as ALS. So much for that Lyme's disease hope! This morning I'm going in to be fitted for a hand brace, just to support my MCP joints (the big ones at the finger/hand junction) and hopefully it'll make typing and other fine movements a little easier. They also noticed a slight bit of a sluggish right foot when I was walking for the PT & OT ladies - I just thought it was my shoes, but it really has only been my right foot that I've been getting caught up on. Doesn't happen often enough to bother me, so I've decided to let it slide for now.

I was absolutely thrilled to hear the doc give his blessing for me to start trying for a baby soon; in fact he said the sooner the better, so that is a big weight lifted. But I do have to quit working in my beloved ICU and move on to a more "low-risk" position - for myself and my patients! I knew it was a bit too physically taxing for me to keep lifting and turning people for 12 hours, but it never occured to me how silly I'd look now trying to do CPR and going limp after only 5-10 compressions. Ah well. 8-hour day shift, here I come!

It's been a helpful 2 months though... allowed me to digest a lot of this and be mentally prepared for the worst while still hoping for the best, so it didn't come as too bad of a blow. Still sucks, but what can ya do other than stay positive, right? I figure I'll just be a work in progress!

Thanks for all the support so far from everyone! It's been truly great!

~Michelle

 

[brendapals]

Michelle-
Bless your heart, I'm sorry about the diagnosed, but I'm so glad you found the forum! It has been a true blessing for me over the last 6 months.

I completely understand that feeling of leaving the ICU, I left the ER, and I realize there is no way I could do it now, but I still love it! Crazy, isn't it?

Keep the positive attitude, it will work wonders for you,

take good care,
Never give up,
Never let up,
Never lose faith,
brenda

 

[rose]

Oh Michelle, I had such high hopes that this would not be what it is for you! Life just isn't fair.

You've got such a positive attitude, which is going to get you far!

I was actually telling someone about your aspirations with your career, and how interesting it sounded. Is this something you still plan to pursue? It does make sense to get yourself out of the ICU, stress, both physical and emotional are just horrible for ALS.

Did they give you reason to hope that because you're so young, that you can expect to have a slow progression?

About your foot... I was skeptical about how much AFO's would help me, as I reasoned that I didn't trip that much, and, have always been a little bit of a klutz. However, I went ahead and got them as the PT thought it would be best. I am amazed at how much they help me propel myself forward. They have helped me to walk much more than I anticipated. On the downside, it seems like my calves tire easier when I wear them. Anyway, don't rule out getting an AFO, wearing one may help you feel more confident. The ones I have are made of carbon, they're thin and lightweight, and are pretty much invisible under the right style of clothing.

I wish you all the best with you plans for a baby. I think it would be wonderful to have something like this to focus on, instead of your own personal 400 pound gorilla ~ yes, see, he's sitting right over there....

Please let us know how you are, and what you're able to accomplish with your career (and with the baby news too!)

(((hugs))))

 

[elemkay80]

Thank you Brenda & Rose for the encouraging words!

Brenda,

I will certainly miss the ICU a LOT! I've worked in the same one off and on for 5 years, since I finished nursing school and everyone there feels like family, so it's mildly depressing to leave, but I'll still be in the same hospital so I can always go say Hi! I think I'll miss the interesting cases the most though.

Rose,

I actually have 2 apps in with my state's ME's office, both for part-time positions but in different localities (mine and one about an hour away) doing death investigation. I'm keeping my fingers crossed! Well, the ones on my left hand anyway! (haha!) I did get a pretty awesome brace for my right hand/wrist today which is already helping typing a lot. Dr Bedlack reassured me that my age and onset will most likely signify a slow progession. So far it's been a year and I'm still only feeling the brunt of it in my right hand. It was uplifting to hear that, almost like the silver lining on it all. Here's hoping anyway!

~Michelle

 

[awieleba]

michelle~

Sorry for the final diagnosed, but I am wishing you the best for your starting of a family and a slow progression!
I hold you in my thoughts and I admire and stive for your positive attitude!

Bless you!

april

 

[ptich]

Very sorry for your diagnosed, but with your attitude and age let's hope for a really slow progression.

One thing you should be aware about, though (and please correct me somebody if I am wrong): when you become pregnant, you will not be eligible for most of the medical trial treatments. While none of them showed any success so far, there are more and more resourses farma companies are putting into ALS (because it becomes less and less of a "rare" disease, unfortunately), so you may well benefit from such a treatment, especially considering your age. I would suggest you think about it before making any decisions.

 

[Icanmanz]

Hi Michelle, so sorry for your diagnosed. Your post left me in total awe! You are such a strong person with such a piositive mind. May God bless you in every step of the way. I will keep you in my prayers. Please keep us posted, and God bless!

Irma

 

[Zaphoon]

Michelle,

Well, now you know what you are dealing with and there is some consolation in that! I hope your progression is so slow, they'll tag it "Sloth Progression ALS".

Zaphoon

 

[elemkay80]

ptich,

Thank you for your concerns, however I have already thought extensively about the risks vs benefits of having to delay any pharmacological treatments (research or otherwise) while pregnant. It was also something my neurologist and I talked about, and he agrees that if having a biological child is that important to me, that now is the best time and not to delay, no matter what trials or treatments are going on. I can still participate in other trials, just none that involve experimental medications, and I am ok with that. It's just a matter of weighing what's important in one's life, and it is important for me to be a mother and leave a piece of myself on this earth. The fact remains this is a progressive disease, and time spent waiting could be time wasted when it comes to having a healthy pregnancy and healthy baby. But again, I do appreciate your concerns.

Thank you April, Irma, & Zaphoon, too, for your positive comments! I especially like the "sloth progressing ALS" - sloths are my favorite animals so it could be very fitting!

~Michelle

 

[CindyM]

Wow, Michelle! ALS and a new work schedule and now a baby! I'm anticipating the excitement already. Just wish the DX could have been something else. Cindy

 

[lovelily]

Hello Michelle...You have a very beautiful attitude of life! May God bless you with your future plans, and a very slow progression!

 

[jonsjr40]

Michelle
God bless you. I hope every thing goes well for you with your Baby. Sorry for your DX. I wish your ALS is slow like mein is. When I was DX my son was 1 and my girl was 6 now there 18 & 23 and I'm a grandad. So you never know what's going to happen. The Doctor told me I had 2/4 years that was 17 years ago. I well pray its that way for you. Well you take care.
GOD BLESS
Johnny