Caregiver awaiting a diagnosis, todo list

[JohnHMich]

My wife had her follow up physical exam and EMG today. There was increased weakness on the left arm and leg. There was also some weakness starting on the right thumb and right leg. They confirmed the ALS diagnosis. They have us going to the ALS clinic on Wednesday afternoon next week. We met with the physiatrist after the neurology appointment today. Now to figure out who to tell and what to tell them.

 

[lgelb]

I'm very sorry, John.

Give yourselves time to process before you share, even though you had suspicions. Your family's responses may be guided in large part by yours.

We'll be here when you need us.

Best,
Laurie

 

[JohnHMich]

One surprise was there wasn't the melodramatic terminal illness discussion. They issued the conclusion and then got us on the clinic schedule. It was clear that the neurologist was taking my wife thru some variation on the ALSFRS scoring, but they did not mention the score or provide any idea of where she is on the timeline, what her score was on the Dec EMG and what the range was for her instance of the disease based on the change in score. Perhaps this is covered during the clinic 1/2 day. I will poke around the forums to see what the consensus is on ALSFRS.

 

[KimT]

Hi John,
I'm so sorry.
Some doctors are reluctant to make progression predictions. Mayo gave me generalizations and made no mention of my individual case....at first. No doubt, at clinic they will test her breathing and she will see PTs, OTs, a neurologist and any other type of professional they think she needs. They will track her ALSFRS.
I got tired of clinics and stopped going. I have a group of providers locally now and that works for me. I do to to Mayo a couple of times a year because my primary care is there but I have another local primary care within 10 minutes. 2.5 hours each way was taking a lot out of me.

 

[ARCG]

I am sorry, John. You will find good support and information here. There is no one size fits all with this disease, which may be why the clinic is hesitant to make predictions. I found honest feedback from the caregiver forum and suggestions here. It’s a matter of listening to different experiences and then deciding which suggestions meet your particular needs. We found support from many different sources, family, friends, church, neighbors, local ALS support groups and this forum to mention a few. My pals, too, tired of the clinic after a while, but it was helpful in the beginning as they had a loaner closet and fitted my pals for his wheelchair. Later, not so much, as it just measured his progression, which we could see without the day long, exhausting visit, which actually, in our case, always sped up his progression, probably from all the stress and exhausting tests it entailed. He decided to listen to his body and make his decisons based on that.

 

[lgelb]

You can score the ALSFRS yourself but it's not all that. Categorical scales should not be used in linear analysis.

Docs will be better able to prognosticate a few visits from now, and if you keep asking (because you want to know; not everyone does), they will generally be forthcoming with the best answers they can provide. Meanwhile, hoping for the best and preparing for the worst is a good strategy. Typically, the disease is fast/slower/fast, but with fast progression, there is less of a lull.

 

[JohnHMich]

Hopefully the first ALS clinic is the hardest. 12:30 to 5:30. We met with everyone except the dietitian. We get a second leg brace, bipap, cough assist. I assume this means that I make the transition to another part of the forum since we have a confirmed diagnosis?

 

[lgelb]

Yes, no worries, but you can start posting in the General (if you are open to PALS comments) and CALS forums.

Clinic sessions often feel endless. They serve a purpose while you need tangibles like rx and equipment, and may not when you don't. You always have the right to ask for an itinerary and the opportunity to shape it to your needs.

 

[Jrzygrl]

Hi John,

Yes, clinic days are often long and draining for both PALS and CALS. One thing that my husband, then later I did, was email a list of questions/concerns to the clinic team a few days before each visit. It gave them a chance to prepare and kept me from forgetting things as the day wore on. The clinic team appreciated it too. I also emailed them between visits, and they usually got back to me right away.

You will find many helpful caring people here also. I gained a wealth of information from the Caregivers forum . Sorry to welcome you, but welcome none the less.