Looks like I joined the club.

[Mtzu]

Yesterday the neuro told us that I'm still in the "Probable" category but she has not seen progression like mine that was not ALS. She gave me a prescription for Riluzole. We are still in the shock and denial phase.

From the time it was first suggested that this may be what we are facing we have been in a "let's play as much as we can mode." I expect we will continue that as long as we can.

That said, we know that there is a lot of planning to do and will jump on that soon. Any insight and recommendations are appreciated.

 

[lgelb]

Mtzu/Michael,
Welcome to the dubious honor of joining the club. As I recall from your previous posts, you seem to have slow progression. Any time you want to share more about your situation, we're happy to advise.

--Laurie

 

[Nikki J]

Sorry to hear this. One day at a time while taking time to plan ahead, contradictory as that sounds

 

[Vincent]

Sorry to meet you here. You are among friends.
Vincent

 

[Blondrea]

Hello. Mtzu is my partner of almost ten years. Let me tell you a little bit about him. This will be slow typing, as I am heaving with sobs as I write this. He is an amazingly kind man. And so handsome. We never, every go anywhere without someone coming up out of the blue and asking good-naturedly which TV show or film they recognize him from. He's never been vain, though. He's always devoted his life to helping people. He was on ski patrol for years, and lately has been coast guard auxiliary. Both volunteer positions. He is very athletic. He's taken and taught martial arts for years. He is brilliant. He has an engineer's brain, able to figure anything out. And he is an adventurer. He climbed forbidding Mt. Washington in New Hampshire just a few weeks ago. I really appreciate all of the support we've been getting from this group. And I have a slew of questions coming your way. But for now, I just wanted to introduce this amazing man. Thank you for your kindness and generosity.

 

[ECpara]

Mtzu, so sorry you have gotten this probable diagnosis. This is not a fun club but this forum will give you comfort and answers " free for the asking"! Blondrea, what a beautiful tribute to your partner. Sorry you will have to watch this disease take its toll on your partner. My husband has had ALS for over three years and it takes a lot of faith, strength and courage for both of us to face this. Interesting to note, a majority of PALS were athletic. Blessings to you both!

 

[gooseberry]

Firstly, welcome. Sorry you are here but you will find a wealth of knowledge and support from this group. Breathe as deeply as you can. Okay if you want to start planning, read the planning sticky. Lots of good info and all in one place. Don't feel like you to do it today. You will be bombarded with info if you choose. I wish we had given ourselves some time to simply absorb the diagnosis, process it, and accept ita.little before we jumped into all the planning. If you are progressing slowly you may be able to do this.

 

[hjlindley]

Welcome to the club no one wants to be a member of. My ALS started in my right hand, my dominant hand in 2007. I had a probable diagnosis in 2009 and a definitive diagnosis in 2011. My only advice is to get to know your ALS social worker as they can be a great deal of assistance. In terms of modifying the house don't modify it for what is now but what will be. The best advice I can give you is to stay ahead of the disease. Many of us were athletes. I was teaching six hours of exercise including weightlifting when this thing started. After all these years I can still speak, swallow, and breathe. I took the advice of the durable medical equipment guy in town and gotten a chair before I took too many damaging falls. Every patient progresses differently.We are all here to help you. Many of us have been on this road for a long time. Celebrate every day, don't worry about a future you can affect and remember it only affects the muscle not the heart brain and soul.
Hollister

 

[MaxEidswick]

like all the others, sorry to meet you here but welcome!

The next weeks, months will be an emotional roller coaster. Try to go with the flow, expect fear, anger, bitterness, and a new awareness of life. I have found that being active here on these forums has helped me in way I cannot explain, but you will see.

before trying miracle cures, etc., ask here, go to alsuntangled dot com.

Lastly, anxiety can be debilitating so beware.

Lastly, lastly DON'T FALL, take vitamins, keep your calorie intake up, and stay away from sick people, especially w/ respiratory problems.

Kind regards and warm welcome,
------

> I do know it is healthier to be thankful for what still works than to resent what doesn't (easier said than done )

 

[Mtzu]

Thank you all for your replies, advice and encouragement. Yes, one day at a time. I think my moments of denial are helping a lot right now.

I guess I'm lucky in that I'm still in the early stages of this. My weakness is in my hands and somewhat in my upper arms. When I went to my first neuro appointment last summer I didn't notice any weakness at all. I went because of the muscle twitches I'd had for over two years. But, the weakness now real and is definitely progressing. So, if we can keep our heads on straight we are going to go play as much as possible while I can.

Now, for some irony. I do improv comedy shows here in LA. Last night we did a show. It was great to see people laugh and have fun. All the while inside I was a bit torn up. But, as they say "the show must go on." Talk about a surreal experience. In the end it proved to be good medicine. Now if can keep my finger from curling while I'm typing that would be great. Wow, what a crazy roller coaster ride already.

 

[skipper66]

Hi Mtzu,
Welcome but so sorry for your need to be here. They had my dad where some braces on his hands to keep them from curling as much. You might check into them.
Also, my dad drinks Boost and Ensure and I think the extra vitamins and nutrients do help a little with his immune sytem. You might give them a try.
I'm not my dad's caretaker but if I can be of any support ot you. Please don't hesitate to ask. The PALS/CALS on here are great and are more lend willing to lend a ear if you need to vent and they also have alot of good ideas on making things at least a little more manageable with this monster. Hugs, Kim

 

[hjlindley]

There is something called a figure 8 split that will keep your fingers from curling. I got them sized by the hand therapist and bought them on Amazon.Good luck.
Hollister

 

[Mtzu]

Thank you for the advice about taking supplements and the brace/splint for the hands. I'll certainly look into those.

 

[anderkling]

It might be a good idea to get checked for "multifocal motor neuropathy," which is treatable. It starts typically in the hands and arms, but does not progress further. I know someone who was misdiagnosed with ALS.
- Charlene

 

[anderkling]

I would like to add to my previous post that I am very sorry to read of your diagnosis. I understand those heavy sobs, as we PALS all do. You may grieve deeply, then rise up to enjoy every day, create wonderful memories and grieve some more. But try to not let ALS define you or rob you of the many blessings of life. There is grief, but also life and joy after diagnosis. The journey is hard, but there are also blessings along the way. For me, the mutual love between my family and friends has grown stronger, and the experiences with them all the more precious. Don't let ALS defeat your spirit.
- Charlene