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ThisPresentMoment

Distinguished member
Joined
May 30, 2018
Messages
124
Reason
Lost a loved one
Diagnosis
12/2017
Country
US
State
MN
City
Minneapolis
Hi,

I'm new here, so I thought I should introduce myself. After going from doctor to doctor for over a year, my Dad was diagnosed with ALS at the end of Dec. 2107. (I would say his symptoms started in about July 2016.) From what I'm reading it seems to be limb onset, with the greatest affect on his arms, but he's also having more difficulty standing. (They just got a lift chair delivered this week. Yay!)

He and my Mom are about 45 minutes from me. Because there was discussion about the possibility of other diagnosis, we're at the beginning of physical preparations. I can already see that the information here will be invaluable. I will be recommending we get started on a PWC immediately.

Thank you all for all the time so many of you have invested here. After reading a couple of days, I feel much more informed to prepare for is future needs.

My love and prayers are with PALS and CALS alike. May god bless you all with peace and His presence.
 
Welcome here! The occasion is a sad one but under the circumstances I'm happy to see you here, know you're tackling this thing in exactly the right way to help your parents and even jump into the discussion. Come here often to read and rant, give advice and ask questions! :)
 
Welcome and I'm sorry you need to be here.

If you haven't already, you will want to get him involved in an ALS clinic. They have the medical staffing for all the different fields he will need along the way. And by all means keep him safe with no falls, more than small ones can seem to speed things up.

Come back and ask questions, there are no dumb questions, unless you go to the DIHALS sub forum. Things will get better along the way.
 
Welcome, TPM, and sorry to hear about your dad. A couple of your fellow CALS here are in your fair city and can perhaps be of help. No question is too large or small.

Best,
Laurie
 
I noticed that there were a few in MN! We are probably passing each other in the halls at UofM and Mayo.
 
Welcome to the forum nobody really wants to be on but everyone loves.

There is so much information. I was fortunate to find it when I was going through the diagnostic process. It helped me to understand how and why so many tests were necessary.

Laurie recommended that I get a lift chair because I was having so much back pain and I've had two wonderful years using my lift chair. I have to remind myself to get up and stretch every so often or I'd sit in it all day long. I think every PALS and CALS should have a lift chair.

I got my PWC early (a year ago after falling and spraining my good ankle.) The ankle healed and I'm not using it daily yet but it's available if I decide to go far. It was a lengthy process and you must push to get all the required features. One of the things I found was that when they do the evaluation, they will recommend what features you need. I also have fibromyalgia so they recommended special padding on arms and memory foam supports instead of the harder ones on some chairs. I had to fight hard for the elevator function and, in the end, Permobil ate the cost of it.
 
Thank you for the comments on the PWC, Kim. We had an appointment at the U last week and ordered all sorts of goodies from the ALS org. We also started the process for a PWC. On to Mayo this week! The advice here has been invaluable. It has given us an idea of what questions to start asking. Thank you!
 
Welcome to the journey.

Get it before ya need it. Not need it before ya have it.

Good place for real info.
 
Sorry to have to welcome you. This is a great site for support and information. Wishing you the best,
 
I don't see how to send a PM? Should I have access to that on this forum?

We have a wheelchair assessment tomorrow. My poor parents have a different appointment every day this week. We're all feeling the stress.
 
New members need a certain number of posts before they are able to send PMs (25+, I think?). If you wish to contact someone in particular, you can go to their profile page and leave a visitor message for them, but it will be publicly viewable.
 
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