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MaxEidswick

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Joined
Sep 1, 2013
Messages
5,567
Reason
PALS
Diagnosis
08/2013
Country
US
State
Texas
City
Pinehurst
Paul, are you happy with the exercise plate you bought? I weigh in at ~240# now, so ot may be a factor. The exercise bike comes on Thursday. I am planning on starting the DP this weekend, next week at the latest. I am onset q4/2010 but still walking and learning to type one handed :)

Max
I have an exit strategy.
 

dbltree

Distinguished member
Joined
Jan 3, 2013
Messages
217
Reason
PALS
Diagnosis
01/2013
Country
US
State
Iowa
City
Birmingham
Paul, are you happy with the exercise plate you bought? I weigh in at ~240# now, so ot may be a factor. The exercise bike comes on Thursday. I am planning on starting the DP this weekend, next week at the latest. I am onset q4/2010 but still walking and learning to type one handed :)

Max
I have an exit strategy.

Yes it is my favorite exercise tool Max, bought on Amazon for $300 but better quality ones are in $1500 range. Helps with spasticity and atrophy and pretty safe to boot.
 

dbltree

Distinguished member
Joined
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Messages
217
Reason
PALS
Diagnosis
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Country
US
State
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City
Birmingham
Physical therapy can be very helpful and my MD ordered in home PT for me. They stretch muscles and give helpful advice for ROM exercises to help avoid paralysis. I have arthritis in my neck and PT has been beneficial in reducing pain and stiffness...something to talk to your Dr. about...
 

allformom

Member
Joined
Nov 24, 2013
Messages
11
Reason
Loved one DX
Diagnosis
11/2013
Country
US
State
va
City
chesterfield
My mother is a 49yr old, previously very healthy and active woman who was diagnosed Monday with ALS. Very beginning of June we started to notice slowing of her speech and a random "giddiness" about her. By end of July she was slurring and having some difficulty with the strength in her hands. By September she was having stiffness in her joints and trouble swallowing. By end of October she could barely walk, unable to step up on a street curb on her own, severely slurred speech, severe weakness in her arms and hands. She is losing weight(only 110lb prior to this!) and falling often. She did a breathing test MOnday and was at 50%. I guess my question is, is this progression "normal"? She just seems to have gone from 0-100 in 5 and a half months and it's terrifying. the diagnosis its self was devastating. I fear that she is declining at a fast pace.
 

Nikki J

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Joined
Mar 22, 2012
Messages
10,483
Reason
PALS
Diagnosis
04/2014
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State
MA
City
Boston
Allformom, I am very sorry for your mom's diagnosis. Progression rates vary greatly so there is no one " normal". It does sound like a fast progression so far unfortunately. Is she planning on a feeding tube? If so I hope she will get one soon before she loses too much weight or her breathing gets worse. My sister is delaying and I greatly fear waiting too long. This must be a terrible shock to all of you You will be in my prayers
 

dbltree

Distinguished member
Joined
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Messages
217
Reason
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Diagnosis
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Country
US
State
Iowa
City
Birmingham
Contact your state ALS society for help and guidance in how best to care for your mom, waiting too long to get a PEG might mean a trach will be mandatory. This forum is filled with wonderful, caring and compassionate people, so as you have questions just ask!
 

allformom

Member
Joined
Nov 24, 2013
Messages
11
Reason
Loved one DX
Diagnosis
11/2013
Country
US
State
va
City
chesterfield
Thank you both so much for your responses! Any and all guidance is greatly appreciated! I felt the best resource is experience so wanted to reach out to the people who know best! I have contacted the local chapter today and am hoping to get some guidance there. We have a follow up appt w the neurologist on dec 2nd as well. I'm not sure what a PEG is?
 

Nikki J

Moderator
Joined
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Messages
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Reason
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Diagnosis
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Country
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State
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City
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Peg is a feeding tube.
 

dbltree

Distinguished member
Joined
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Messages
217
Reason
PALS
Diagnosis
01/2013
Country
US
State
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City
Birmingham
In the begining of this thread there is helpful info regarding signing up for SSDI and once that and Medicare is approved you have 6 months to sign up for supplemental health insurance as well.
 

allformom

Member
Joined
Nov 24, 2013
Messages
11
Reason
Loved one DX
Diagnosis
11/2013
Country
US
State
va
City
chesterfield
So moms totally open to the idea of a feeding tube! Which was relieving and somehow deflating all at the same time. On the one hand, I was afraid to approach her about it, as all of this is so new and so sensitive, so to have her agree was great! On the other hand, I cant help but feel immense sadness because she seems willing to try anything. Almost desperate if you will.. I can't imagine what she's feeling..
As for soc sec, I called the day after diagnosis. We have been approved and are awaiting the award letter. Three days later I contacted Medicaid and with a little persistence was able to bypass some of the typical process, do the app over the phone for her and have it escalated to a supervisor. Supervisor told me they'd send us a response in 10 days. Now I'm kind of at a standstill of what to do next. I just want to get all of her affairs in order but I honestly don't know where to go next. They've brought her out a face mask to assist with breathing along w a machine that assists with sucking out mucous for her. I went to my pcp for some anxiety meds who spoke to me candidly around her progression and said in his experience based on her decline he thinks we have around 6 months! Extremely deflating. I of course did not share this info w her. I'm in a bad place. We go to see her neurologist on Monday for our 1st follow up appt since diagnosis. I want to address what my pcp said but am afraid to upset my my mother. Upon initially receiving the diagnosis I freaked out so bad and my poor mother simply said I don't know what ALS is but obviously my daughter does. She's only just started researching and is going off of the initial 2-5yr prognosis he told her and I don't want to overwhelm her. Any advice would be greatly appreciated! I know I am writing a novel but this website has become my go to as I just don't know who else to ask.
 

Elizabeth 328

New member
Joined
Nov 25, 2013
Messages
1
Reason
CALS
Country
US
State
NC
City
Raleigh
Hello to everyone out there. This is my first time reading the site. My husband was diagnosed in August 2013. He is able to walk, but not without his walker. Wheel Chair has been ordered. I just want to say, we were extremely upset when we learned of his illness, but being the happy upbeat person he has always been, it is impossible to be sad around him. He has accepted this illness and we live each day as upbeat as we can. We have so many things to be thankful for and we try to concentrate on that. Our thoughts and prayers go out to all who read this.
 

dbltree

Distinguished member
Joined
Jan 3, 2013
Messages
217
Reason
PALS
Diagnosis
01/2013
Country
US
State
Iowa
City
Birmingham
Only God knows how long we have so trying guess is not productive nor necessary. Discuss things with mom so things are in order, then care for and shower her with love. Talk to your local hospice as well, they'll be very helpful in helping you care for your mom.
 

MaxEidswick

Legendary member
Joined
Sep 1, 2013
Messages
5,567
Reason
PALS
Diagnosis
08/2013
Country
US
State
Texas
City
Pinehurst
In the begining of this thread there is helpful info regarding signing up for SSDI and once that and Medicare is approved you have 6 months to sign up for supplemental health insurance as well.

Paul, I am a Veteran, do you (or anyone else) know if the SSDI and VA benefits are mutually exclusive? I will also query my PVA rep. What does SSDI do for us?

Thanks,

Max
 

MaxEidswick

Legendary member
Joined
Sep 1, 2013
Messages
5,567
Reason
PALS
Diagnosis
08/2013
Country
US
State
Texas
City
Pinehurst
Hello to everyone out there. This is my first time reading the site. My husband was diagnosed in August 2013. He is able to walk, but not without his walker. Wheel Chair has been ordered. I just want to say, we were extremely upset when we learned of his illness, but being the happy upbeat person he has always been, it is impossible to be sad around him. He has accepted this illness and we live each day as upbeat as we can. We have so many things to be thankful for and we try to concentrate on that. Our thoughts and prayers go out to all who read this.

>My husband was diagnosed in August 2013

Me too

>being the happy upbeat person he has always been, it is impossible to be sad around him. He has accepted this illness and we live each day as upbeat as we can. We have so many things to be thankful for and we try to concentrate on that


Elizabeth, I can learn many things from you both! Thanks you for posting ...

Max
 

zoohouse

Senior member
Joined
Jan 14, 2013
Messages
958
Reason
CALS
Diagnosis
07/2012
Country
CA
State
B.C.
City
Salmon Arm
My husband collects both his SSDI, LTD from his employer and his Veterans disability benefits. SSDI is a cheque every month and medicare, but as a veteran you qualify for 100% coverage, which includes all durable equipment, a mobility van grant, a substantial special adaptive housing grant, HISSA grant, for immediate adaptations for your home, CHAMPUS VA medical benefits for your family, and educational benefits for you children under the age of 27, and your wife. I am surprised that this isn't already set up for you by your PVA representative.
I don't know what we would have done with out the VA benefits. Also they will pay for your home care, even if it is your wife.
Paulette
 
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