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BlueandGold

Senior member
Joined
Feb 28, 2015
Messages
634
Reason
PALS
Diagnosis
04/2015
Country
US
State
WV
City
Sandyville
I have my first ALS Clinic visit on Thursday. Was wondering if any of you might share what to expect? I understand there will be multiple providers that will be "looking" me over. Should I expect my first FVC test and blood tests since I'm taking Riluzole? Will they "stage" me, for lack of a better term, to determine my progression? I'm taking my two sisters and my wife with me. I figured it would be good for my wife to know that others are being educated too. Don't want her to feel like she has to shoulder this by herself. I'm hoping someone will talk to me about SGD's as well as my speech is getting pretty bad.

Thanks in advance for the input.


Vince
 
Vince, plan on a long, exhausting day! A word of caution: taking 3 people plus yourself might slow the process down considerably and derail the conversations. You might want to consider designating only you and your wife as far as participating in the discussion, questions, and asking your sisters to take good notes. Also consider if having your sisters there will inhibit some more personal topics, like your sex life, end of life questions, etc. You know best if you can speak freely on all topics with them there. The other issue that slows things down is asking questions that pertain to the specialist that is with you at the time. For example, restrict questions on weight, food, etc. to the dietician, and questions regarding making life easier to the physical or occupational therapist.
Think you will find clinic worthwhile and will want to have much time afterwards to process all the information. We often found that my husband heard things differently from my understanding, and notes were vital to clarify. Good luck.
 
It will be a long day, but it's a great time to get all your questions answered. Something that's helped us is bringing a notebook and having questions on separate pages with an extra page for writing down answers and other notes, grouped by specialist, ie:

1) Speech (including questions about SGDs and swallowing)
2) Occupational Therapist (assistive devices)
3) Dietician (nutrition and weight)
4) Pulmo or Respiratory Tech (questions about breathing, any coughing or clearing excess mucous)
5) Neurologist (progression, medications, clinical trials)
6) Social Worker (referrals, links to services)

At the first visit, they should be asking you a lot of questions to get an understanding of where you are and what you need and then giving suggestions. Pulmonary function tests and neuro exam as well as a quick cognitive test should be done. It can help to have a history of symptoms, too--what you've noticed and when and how it has progressed. My PALS and I sit down about once a month and go over that list to note any changes so we have that list ready at clinic.

I hope it goes well, Vince.

Cindy
 
Can I suggest you take a voice recorder with you, that way you can go back over what they have told you.
Love Gem
 
Organized lists as 4 suggests are so helpful. I go one step further and print out a list of question and hand it over ( this probably only works if the list is fairly short). One list for each specialty of course. I also print out a couple of lists of meds and supplements. Of course it should be entered into the record to start but sometimes I seem to get asked more than once. Only you can decide about who to take with you but I do agree with Donna to at least review the idea. focus is important and also this is the time you are going to start building relationships with the team. Not just the neuro but the pt, st,nurse,research team. After a couple of visits you hopefully will have a real bond with them. it is great that your sisters are willing to be involved. Could you consider maybe bringing them one at a time to subsequent visits?
 
hey vince, are you a vet? what clinic you going to? i am here in WV also and go over to UVA als clinic. it will be a long day with repeated questions from your "team" take some snacks. keep a sense of humor if at all possible and good luck! chally
 
Hi Vince, thinking of you for your first clinic, with all this awesome advice you will be prepared.
God bless, Janelle x
 
Thanks everyone. Love this forum. It is so helpful. Chally, I'm going to the WVU ALS Clinic. I'm not a vet, wish I was as they seem to offer a lot of awesome assistance. Good idea about packing a lunch or snack. As for my sisters, they are there as support for my wife (they are like her own sisters). They will be taking notes and helping us to remember everything that we are told.

I have already begun making a list of questions for each specialty but I'm sure I won't be able to cover everything.

Thanks again.

Vince
 
Try to write down examples of things. Instead of saying I have hand weakness say I cant type more than 10 characters without cramping or I cant pick up a soup can.

I am able to walk 100 ft on my own with no problems. The specifics help.

Like cheerleader said they will ask about erectile dysfunction, bladder/bowel issues etc. You can always ask your sisters to leave for this part if you are uncomfortable.
 
Steph very good tips. I am jotting down stuff for September, things I never would have thought of, except for this thread.
God bless, Janelle x
 
This is great info! I'm taking notes with each post.

We've only had one clinic visit with different people meeting us in the room and checking different things. It wasn't near as extensive as the descriptions above. We are transferring to a different institution with the hopes of more expertise and better care. Reading the experiences written about above validates the move.
-Michael
 
One thing to remember, its all about how you feel. They will ask this a lot. How do you feel? Do you have pain? My husband said no, but I would remind him sleeping on his shoulder bothered him and he needed medicine. They might not specifically ask "the" question but explain if a part is affected. Next time you go, that will ask these same questions in relation to this baseline visit.

Going forward, you will want to keep a journal...or your cals can , of any changes or other doctors you have seen. Write everything down. You never know what might be important.
 
Hey Vince, I hope clinic went well and wasn't too exhausting for you...

God bless, Janelle x
 
Oh no hang on...read that in about 10 hours...(damn time difference:shock:)
 
Hey Vince
I went with my dad to 2 different clinics in the past 7 months. They were each very different.
One was in a rural setting, in Salisbury MD, and the other in downtown Miami FL. Hands down, the Maryland clinic was much much more friendly and caring. Caring is the operative word.
One piece of advise I have- is that you do not underestimate your difficulties. You have a life threatening progressive disease- and you need and deserve every bit of aid available. If you have difficulty walking 100 feet, but "can" do it- don't show off. Also, I was told at the Miami ALS clinic that getting a power chair approved by Medicare is NOT contingent on how far you can or can not walk. Just the diagnosis of ALS qualifies you for the power chair, and other machines- like a Trilogy. Start the process of getting a power chair immediately. It takes a long time, and you most likely will need it by the time you finally get it in your possession.
Good luck. Let us know how it goes
 
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