Just diagnosed

JimP

New member
Forum Supporter
Joined
Jul 3, 2021
Messages
4
Reason
PALS
Diagnosis
06/2021
Country
US
State
FL
City
Ruskin
Hi , just diagnosed ( June 23) with ALS, looking for all kind of help with bathroom remodeling , wheel chars "plan for the worst, hope for the best , fight like heell

I've been very active all my life ,ran 4 marathoners , bicycled 1000's of miles and Triathlons. Last September I began to loose strength in my left hand . My GP said it was apathy ! In February I began to have trouble on my morning walk. After 2 wasted doctor visit a neurologist diagnosed ALS.
I am scheduled into Tampa Hospital ALS department 9/7/2021.
 
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ShiftKicker

Moderator
Joined
Mar 16, 2015
Messages
4,236
Reason
DX UMND/PLS
Diagnosis
06/2015
Country
CA
State
BC
City
Vancouver
Hi Jim-

Welcome to the forum. I'm sorry you have reason to be here, but happy you found us.

I've moved your thread to the Newly Diagnosed section. I recommend you poke around in Resources when you have the time. There's a fair amount of information there for you. Also please feel free to introduce yourself a bit more. You may find others here who can provide you more information specific to your location, etc.
 

KevinM

Distinguished member
Joined
Mar 30, 2019
Messages
394
Reason
PALS
Diagnosis
06/2019
Country
US
State
FL
City
Tallahassee
Hi Jim. Fellow Floridian here, and there are several others. It is the worlds worst club, but the club members here, both cALS, former cALS, and pALS, are incredibly knowledgeable and helpful. We look forward to more interaction with you.

Since you’ve been diagnosed recently, I know the shock and fear can be overwhelming. We are here to help in any way possible. Kevin
 

Mary2

Active member
Joined
May 1, 2021
Messages
84
Reason
CALS
Diagnosis
04/2021
Country
US
State
GA
Hi Jim, My PALS and I are in GA. So sorry that you are here. The people on this forum are wonderful and if you have any questions or anything you want to say this would be one place to do so
 

JimP

New member
Forum Supporter
Joined
Jul 3, 2021
Messages
4
Reason
PALS
Diagnosis
06/2021
Country
US
State
FL
City
Ruskin
Thank you all so much !!!!!
 

lgelb

Moderator
Forum Supporter
Joined
Nov 5, 2009
Messages
10,294
Reason
Lost a loved one
Diagnosis
00/0000
Country
US
State
WA
City
Seattle
Welcome, Jim, while sorry you are here. If you use the search button up top you can search on terms like bathroom and wheelchair. Of course, feel free to ask specific questions as well.

Best,
Laurie
 

lisa g

Distinguished member
Joined
Apr 17, 2019
Messages
405
Reason
PALS
Diagnosis
04/2019
Country
US
State
FL
City
Fort Pierce
Welcome Jim although we didn't want to have to welcome anyone. Another fellow Floridian here. You will find alot of helpful knowledge here. We're all in this together.
 

Fusia

Distinguished member
Forum Supporter
Joined
Oct 26, 2019
Messages
145
Reason
PALS
Diagnosis
08/2019
Country
US
State
MT
City
Big sky country
Welcome, Jim, although I'm very sorry you are now part of this club that no one wants to be in. My symptoms also started in the left hand - I first noticed it in August 2018, was formally diagnosed in August 2019. There are lots of great resources here and very helpful, knowledgeable people.
 

Mary2

Active member
Joined
May 1, 2021
Messages
84
Reason
CALS
Diagnosis
04/2021
Country
US
State
GA
Jim, Did the GP say you had atrophy (a wasting away of muscles) or apathy?
 

JimP

New member
Forum Supporter
Joined
Jul 3, 2021
Messages
4
Reason
PALS
Diagnosis
06/2021
Country
US
State
FL
City
Ruskin
atrophy my bad spelling. said same thing in February !?! After failed physical therapy finally went to a neurosurgeon , after 4 mri's went to a neurologist , in 20 minutes he said ALS. So much wasted time !
 

Cathy H

Member
Joined
Oct 7, 2020
Messages
11
Reason
PALS
Diagnosis
09/2020
Country
US
State
FL
City
Bartow
<link that includes solicitation of donations removed> I have gotten the best help for my ALS journey from this free website and its affiliated support groups that meet via zoom. I am also seen in Tampa, but they use only conventional practices. For more broad minded treatments you have to look elsewhere.
 
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Firefighter58

Senior member
Joined
Jun 21, 2016
Messages
587
Reason
PALS
Diagnosis
05/2014
Country
CA
State
ON
City
Oakville
Hi Jim welcome aboard, it really sucks to be here, but we are loyal and some some folks here have great knowledge of ALS and related diseases, Iam not one of them , i’am just along for the ride. As I am sure you know there is no cure as of yet but we all hope someone comes up with one and soon. But in the meantime make yourself as comfortable as you can because there is nothing you can do other then wait like the rest of us. There are many things available to make the wait as enjoyable as possible and as you need them you are welcome to ask our opinion and you will receive many answers in return it’s up to you to weigh the good from those that don’t apply to you and live life the best you can.
Al
 

Miss

Very helpful member
Joined
Apr 11, 2010
Messages
1,765
Reason
Lost a loved one
Diagnosis
04/2010
Country
US
State
In the Land of Cotton
City
Way Down South
Hi Jim ~

By now, you have been to your clinic visit. Hopefully, the team at USF have been able to answer many of your questions. As an ALSA Certified Treatment Center, there should be a full staff (Neurologist, RN, Social Worker, Physical Therapist, Occupational Therapist, Speech and Language Pathologist, Dietician, and Respiratory Therapist) at each clinic visit. If you still have questions, reach out to them. You do not have to wait until your next clinic visit. If you have still have questions, please reach out here. After my late husband's journey with ALS 2009-2011, I became an LMSW and work in an ALSA Recognized Center of Excellence. I'm glad to be of help any time.
 
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