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Wildemom

Member
Joined
Feb 5, 2014
Messages
14
Reason
CALS
Diagnosis
04/2013
Country
US
State
Illinois
City
Carthage
Thank you for all your posts. I feels good that people care enough to respond. We have been connected with MDA and an ALS Clinic and they have been very helpful! After a couple crazy days with some big falls we have let the idea of the stair lift go and are moving downstairs. How long did you find when your legs became weak and started going out from under you did you find you needed a wheelchair? I will read the book you suggested, I find those that have been suggested so far to really be helpful and give me insight into what we are dealing with. I try to let him make the decision and I follow his lead but I cannot stand by and watch him get hurt when I know we can be smarter and safer. Our children have good days and bad days. When they see him struggle or get hurt it takes a toll on them. They are in counseling and I think that is helpful but each deal with it in different ways. I know that at this point we are in the easy stages and the worst is yet to come. I long for the life we had. I have to ask another question...How do you deal with friends and family giving you advice on alternative medicine, getting your house ready and how you are handling life situations? I want everyone's help and thoughts but sometimes it is all to much to digest. I also don't want to hurt anyone's feeling.
 

affected

Guru status reached
Joined
Apr 26, 2013
Messages
13,337
Reason
Lost a loved one
Diagnosis
05/2013
Country
OZ
State
AU
City
lala land
Wish there was an easy answer.

I opt for risk management.
My PALS says I would rather die trying to do something than just do nothing.
He views any safety I try to put into place (walker, wheelchair etc) as being punishment!

Somehow you have to get across to him that everyone is involved. I did a family meeting and everyone got a chance to speak and say their view on safety. (his last fall split his head open, broke a rib, damaged shoulder and hip)

It was great, as we all had slightly different views, and we all acknowledged that he doesn't want to be dumped in a bed to rot. We did come to some agreements so everyone was taken into account. However with each new step as he rapidly progresses we seem to go through it all over again.

I've learned to smile and nod and thank people that give stupid advice. Funnily they often forget it all pretty quickly if I don't make an issue of the stupidity of it.

We have rearranged the house bit by bit as he progressed. Some things work and some don't and we rearrange again. No magic formula as each house is different. My PALS only uses about half the house now and lives in the lounge room (minus everything that used to be in there)
 

Santa joe

Senior member
Joined
Oct 14, 2013
Messages
637
Reason
Lost a loved one
Diagnosis
02/2012
Country
US
State
South Carolina
City
Goose Creek
My den looks like a hospital room. I have a hospital bed, ventilator, oxygen tank, oxygenitor and 2 rolling carts for supplies. It is what it is. When anyone offers suggestions I don't think will work, I just nod my head yes and then do what I think is best for us. I have scars on my tongue from bitting it so much.
 

Barbie

Extremely helpful member
Joined
Dec 29, 2007
Messages
2,659
Reason
Lost a loved one
Diagnosis
01/2007
Country
US
State
FL
City
orlando
Hello Nuts, as far as knowing when to get a PWC, your clinic should help out with this. it is hard but the big thing is safety. most pals don't go walking straight to chair...there are canes, walkers, scooters. my husband was too proud to use a cane, so he tried a walking stick. since he was home alone during the day and he had fallen several times I insisted he get a scooter. I didn't want one of our kids to come home from school and find him in a puddle of blood. That argument worked. he loved his scooter and used it for a long time--it was safe for him and really has little stigma.

you are doing the right thing to let him stay in charge of his decisions, especially if he does not have FTD. it is a fine line to make him safe, plan for the future and still let the pals be in charge. it will get easier, but in the beginning you really can't blame him for not wanting to believe what is going to happen to him. learn about options, and suggest them. I think the walking is one of the big hurdles, and so dangerous too.

Remember to take a deep breath, and be kind to yourself.
 

poppies

Distinguished member
Joined
Apr 2, 2013
Messages
233
Reason
Lost a loved one
Diagnosis
02/2013
Country
SA
State
Kwazulu Natal
City
Durban
Gosh I needed to hear what you had to say today. Thank you so much Dave. :)
 

barneyswife

Distinguished member
Joined
Jan 10, 2014
Messages
224
Reason
CALS
Diagnosis
08/2013
Country
CA
State
b.c.
City
magna bay
My youngest son came home for a visit with us shortly after the diagnosis to share that he had put aside a very large chunk of money for dads future needs. We went on the internet and found and priced the things that we would need in the future. (I am dying inside at the beauty of his soul) Barneys needs in the future were going to be very expensive! Long story short I did not order anything. Phew am I ever glad I did not! As we are all finding out everyone with this horribly cruel disease progresses at different speeds. And there are a lot of groups and organizations that have the necessary equipment at no cost. If I had to give any advice it would be to find and access all of these wonderful organizations and become a member.
Hugs
Linda
 

zoohouse

Senior member
Joined
Jan 14, 2013
Messages
958
Reason
CALS
Diagnosis
07/2012
Country
CA
State
B.C.
City
Salmon Arm
Linda, how proud you must be, that type of compassion and love did not happen by accident, it is learned. What ALS support group do you go to. We have been going to the one in Kelowna once a month, but I imagine that would be too far for you guys.
 

barneyswife

Distinguished member
Joined
Jan 10, 2014
Messages
224
Reason
CALS
Diagnosis
08/2013
Country
CA
State
b.c.
City
magna bay
Paulette we are very proud of him. Unfortunately we do not go to any support groups as they are all too far away. This forum is our support group! I should say my support group, Barney is in total denial and has completely tuned out ALS and all of its disasters! As far as he is concerned this is just another bump in the road and the magic pill will arrive any day now.
Hugs
Linda
 

Wildemom

Member
Joined
Feb 5, 2014
Messages
14
Reason
CALS
Diagnosis
04/2013
Country
US
State
Illinois
City
Carthage
Linda, what a wonderful son you must have! I can only hope that our three children can be that kind as they get older.
 

DreamsEnd

Distinguished member
Joined
Jan 24, 2014
Messages
445
Reason
Lost a loved one
Diagnosis
01/2014
Country
US
State
AZ
City
Cottonwood
What a wonderful thread this is. Thank you all for your posts!

Sherry
 
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