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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
I'm so sorry to welcome you smiles4Dakota, but you are very welcome indeed. My Dad was diagnosed at the end of 2017. He started with upper limb onset, so his hands / arms were first affected. We have completed the second opinions and the diagnosis is confirmed. He's lost approximately 20% of his upper body strength in the past six months.

We've now moved on to getting prepared. We've hired outside help part time. We're re-checking estate planning. We go for a wheelchair consultation tomorrow. We laugh. We cry. We try to count our blessings every day.

I'm sure that you're both still in shock. I furiously hope that his diagnosis is not confirmed by second opinion. In case it is, my advice is this:

If there is anything on his bucket list, do it now. Do not wait.
Do not invest your time, energy, and financial resources in non mainstream medical adventures.
Live in and treasure the present moment.
 

Cherise77

Active member
Joined
Jun 18, 2018
Messages
60
Reason
Loved one DX
Diagnosis
07/2018
Country
CA
State
BC
City
Vancouver
Thispresentmoment - i’m Sorry to read about your Dad’s diagnosis. My Dad just got diagnosed this week and it’s been devastating for him and my family. It’s just not something you ever expect to hear.
I was just wondering how your Dad is doing as my Dad’s symptoms first started in his hand/arm too. He now has twitching in his legs which is scaring him. He has an appt with a ALS clinic in two weeks, wish it was sooner.

How do you cope day by day? And what do you feel has been the best thing you can do for your Dad? I feel so helpless right now. Thanks for any advice.
 

vafords22302

New member
Joined
Jun 19, 2018
Messages
7
Reason
CALS
Diagnosis
06/2018
Country
US
State
VA
City
Alexandria
Who are you seeing at Hopkins and when? We have our first appt there next week for a second opinion. All the waiting is hard. Would love to hear your experience if you've already gone.
 

ThisPresentMoment

Distinguished member
Joined
May 30, 2018
Messages
124
Reason
Lost a loved one
Diagnosis
12/2017
Country
US
State
MN
City
Minneapolis
Cherise, I'm so sorry that it's taken this long to reply, and so very sorry to hear about your Dad's diagnosis. In my very limited experience, I think we all cope in different ways, and come to accept changes at a different rate. I know I can't control the beast ALS or change the diagnosis. I can learn as much information as possible and try to help my parents be informed and prepared for the coming changes. For example, my days in the past week have been filled with researching power wheelchairs, vertical wheelchair lifts, and wheelchair vans. None of them are completely resolved yet, but progress is being made. There are only three steps into my parents house, but it's come to the point where that's three steps too many. Dad can still get in and out with help, but it's really not the safest option. We need to resolve it soon. I go to any appointment that I can with them, but also accept the help of their friends because I work full time too.

I strongly encourage you to read the sticky thread "Anticipatory planning - trying to stay a step ahead"

https://www.alsforums.com/forum/gen...anning-trying-stay-step-ahead.html#post312536

There's really good advice there of the things you need to begin to think about.

At first I could barely tell anyone about the diagnosis. I've gotten to the point where I can usually say it without tears. I don't think I would cope very well day to day if not for my faith. Life is short for all of us and I believe that we have eternity without pain and tears.
 
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