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Wildemom

Member
Joined
Feb 5, 2014
Messages
14
Reason
CALS
Diagnosis
04/2013
Country
US
State
Illinois
City
Carthage
This is my first post so I am sure by the end it could have many titles. My husband was diagnosed 10 months ago and until the last week things have been a slow decline almost to the point I thought they must be wrong with the diagnosis. We have had to make few modifications to our home but I can now see the changes are coming. We are needing a lift to help him up the stairs and I was wondering if anyone had any dealings with them? Does private insurances or Medicare cover these if prescribed by the doctor? Any recommendations on brands? My husband is also very reluctant to use these accommodations for fear it will make him weak by not using the muscles. So getting him on board when I can see a need is a bit tricky, any thoughts on this? He has never been a complainer and rarely shares declines or how he feels, I have to guess and play investigator. I am sure like most people this was not in the plan, my husband and I are young (or at least we felt that way) with three young children and big plans that will probably never materialize. I have always been a planner so dealing with all of this has been a real struggle. I never know when the next issue will arise or how to deal with it. I have great friends and family but none that know how to get me through these bumps in the road. My husband was my go-to person and now I know the stress is to much and this I must handle on my own. I feel so alone. I visit with a counselor every other week but at the end of the day, it is all up to me.
 

affected

Guru status reached
Joined
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Messages
13,500
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Lost a loved one
Diagnosis
05/2013
Country
OZ
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AU
City
lala land
Welcome!

I'm so truly sorry that you have become 'one of us', but you have come to the right place to receive and give support.

Same here with me - I plan ahead, he resists and thinks 'use it or lose it'. Well um hey, it's really use it, drain energy and risk injury, lose it anyway...

Somehow we bumble along
 

Wildemom

Member
Joined
Feb 5, 2014
Messages
14
Reason
CALS
Diagnosis
04/2013
Country
US
State
Illinois
City
Carthage
Bumble along is so true. At PT, we are told use it. At the ALS clinic, we are told not to fatigue the muscle. Who do you listen to? He really likes PT, he almost finds a support group there so what they say is the gospel. Of course, if I suggest it then we do the opposite. I believe that is just showing that he is still going to be in charge of his body. Which is okay! I want him to keep his independence as long as possible as long as he is not risking his health.
 

zoohouse

Senior member
Joined
Jan 14, 2013
Messages
958
Reason
CALS
Diagnosis
07/2012
Country
CA
State
B.C.
City
Salmon Arm
Hello and welcome. This is a tough one to deal with. We started the PT route early in the game, but it didn't take long for my husband to realize that if he pushed it just a sliver over the line it took a coupe of days to recover. Then the falling started to happen more frequently and that really sent him into a tail spin. Even if he didn't fall, but faltered he shook for a couple of hours, and then was exhausted. When he started using his manual wheelchair he started having more fun as the fear of falling lessened. Then his trunk became too weak to sit upright, so moved into a motorized wheelchair that changed positions. We go out a lot, and he maintains his independence as he is able to buzz around, with his chair raised 16" making him slightly taller than me, and can see everything on the shelves at stores. He is a people person, and he draws attention with his outdoor package wheelchair. Think Tim the Tool Man Taylor, and we are always finding ways to soup up his chair. It has been 2 years since I started noticing problems with him tripping, and he is a partial quad using a sip & puff ventilator to assist his breathing during the day. He has a major smile and a bigger than life personality and attitude, touching anyone that comes in contact with him. Your are going through probably one of the most difficult times of this disease in my opinion, because your husband is just becoming aware of what this disease can mean, but he will slowing accept and adjust.
This forum is a major support for me, and at times my husband reads over my shoulder and has me make comments. Feel free to rant and rave, cry and be angry here without judgement.

Paulette
 

Rhonda J

Member
Joined
Jan 24, 2014
Messages
20
Reason
CALS
Diagnosis
06/2009
Country
US
State
Oh
City
Fairborn
Hello and so sorry for the reason you are here.. but Welcome! In reading your post your husband is in the early stages, which my husband tried and tried to ignore symptoms, such as the walking and falling. He would not relent and admit he needed assistance, therefore making it harder than it needed to be.. on him, on me. It would take him an hour to go down 3 steps and get to the garage. We had a home that the bedrooms and bathroom was upstairs and after his walking and balance became an issue, we moved our bed downstairs to the 1st floor. Blocked off the dining room. Bathroom still upstairs and he went up as long as he could. Ended up having to use a potty chair. We did look into the stair lifts, but our stairway was not wide enough and then if he did get upstairs, he could not get around up there. Tight quarters. My husband started out at 195 lbs. and it got to the point I could not safely transfer him from his bed to a chair. Luckily.. my husband was in the Air Force for 20 years. All of the equipment we get is from the VA. Also.. the VA will give you a grant to modify your home or purchase another home. We used our grant to build a new home, it is made for him. We have a stand assist lift, with a sling that goes around his waist and under his arms, and we use it for bath rooming, too. I understand the aspect of the pride and the will to not accept the things you need to to get through this damn disease. or to even help a little. My husbands Dr. (after a trip to him that took over an hour to get into the building and to his office)..told him.. this cannot continue this way (him not using a wheelchair)..its not fair to him.. its not fair to me..it was Hell watching him crawl along the house standing up.. gripping the little edges of the siding to hold on to. and if he fell.. I could not get him up and he could have been seriously hurt. The VA installed aluminum ramps for him... (we no longer live there)...
My husband now (5 years in).his seems to have hit a plateau and stopped progressing. has had a hospital bed (for 3 years)...with an air mattress..he cant get in and out of bed by himself (hasn't for 4 years)...
he cant roll over or change positions, we use silk sheets to make it easier to move him around on the bed. He has a power wheelchair that can stand up..he cannot talk (for 4 years) and we use Instant Messenger on Yahoo or FB to communicate. The Dr's told us about the weakening of the muscles and the PT. One says do it .. one says don't...my husband does "range of motion" every day with his aide.. she comes in every morning and gets him a shower, up and dressed and the range of motion. Keep your chin up...every day is different. We are here for you!
 

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
Hey!

glad you have found us. I would recommend you forget about the stairlift and accommodate to the ground floor--even if that means moving to a new house. he will get to the point where the lift is not working, and then he will be trapped up stairs or you will not be prepared. And, where will his PWC go? upstairs or down? will he want to be isolated from the family? or living in the family room? Or, he could fall on the stairs and be seriously injured. Injuries lead to a faster progression.


My husband also did everything until he couldn't . But using accommodations doesn't make you weak--it saves strength so he can do the things that are really important like playing with the kids! Was the PT suggested by the ALS clinic? traditional PT is not what is best for pals--there is no building muscles when those neurons are not working right.

this is a tough disease and you have little kids so no wonder you are stressed. We all understand REALLY! this forum will help you get over the bumps in the road now and later.
 

pearshoot

Senior member
Joined
Feb 6, 2011
Messages
633
Reason
PALS
Diagnosis
02/2010
Country
US
State
mo
City
nixa
I agree with Barbie, no stair lift....take a carful look at down stairs....does it have a bathroom and room that can be converted to a bedroom....bathroom close to that room so you can gain space for large roll in shower...consider this before transferring becomes an issue...doors wide enough without tight turns for PWC...PLEASE CONSIDER STAYING AHEAD OF SITUATIN...SUCESS
 

FSHolbrook

Distinguished member
Joined
Oct 14, 2013
Messages
216
Reason
PALS
Diagnosis
09/2013
Country
US
State
ND
City
Fargo
You may or may not have gotten hold the your local ALS local office they have many resources that cost you nothing. Are you involved with an ALS support group? they also can be of great help. I am sure that talking to a counselor is is a very good thing. Kept it up and you and your spouse are on my prayer list.

Rick
 

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 husband was diagnosed in February 2012. My world changed. I'm a planner also so I immediately started making calls for renovating my home to be handicapped accessible. For some reason my husband was very reluctant to say the least. We live in a two story home. To make a long story short - my husband is bedridden and on a ventilator. He had more insight into this disease than what I did. I'm glad he bucked me on those ideas, it would have been a waste of money.

We had PT and OT here at one time. My Pals was so worn out after they left. It would take him 2-3 days to recover. It wasn't worth it for him. I do ROM exercises with him every night. Sorry you had to join us but this is the best place to be. We know exactly how you feel and what you are going through.

Debbie
 

Wildemom

Member
Joined
Feb 5, 2014
Messages
14
Reason
CALS
Diagnosis
04/2013
Country
US
State
Illinois
City
Carthage
Moving is not an option at this time. It is not something I think about but in our rural area there are not a lot of homes for sale. I keep my eyes open but I have not found a home that fits our needs. I have a husband that collects cars and our current home has a large garage. Even though I would give my eye teeth to sell them, he is not ready and I think forcing him would be very hurtful to him and would cause tension in our relationship. I must wait for the right time, it will come but now is not that time. If nothing else, I am a planner. Our ALS clinic has been very helpful in making us proactive. I have a ramp built that aids in getting him from the driveway to the front door. It also has an extension that will get us to a basement door. We do have a basement that offers a bedroom, bathroom and living area. We have made arrangements for the bathroom to be remodeled this Spring. PT was recommended by the ALS clinic and the therapist at the clinic has worked closely with where he goes to make sure he is not hurting the muscles. We believe PT has kept him walking. He enjoys the time there and socializing with the other patients. So in that aspect I think it has been good. I would never want him to do anything that would hurt himself or his abilities but I have to let him make his own decisions otherwise I know he feels like I am micro managing and there will be a time when he will not have a choice. At this time we do not use a wheelchair. When that time comes we will be moving our families activities down there. The stairs have just started to become difficult and I thought the chair lift would give us some more time upstairs. I am so green around the ears that this is all just a guessing game, I really have no idea what I am doing.
 

zoohouse

Senior member
Joined
Jan 14, 2013
Messages
958
Reason
CALS
Diagnosis
07/2012
Country
CA
State
B.C.
City
Salmon Arm
I agree with the others about the stair lift. We thought about doing the same thing, but decided to move into the family room that was at the front door level. We were there less than 4 months, and his ability to sit in an upright chair was compromised, so a stair lift wouldn't have worked, and they are very expensive. I know what you mean about keeping your husband's cars until he is ready to let them go. My husband has several things like that, but at least it didn't interfere with getting a new home. We had to sell our home as it was a 4 level spit and I knew it was going to be miserable trying to make it work. We purchased a piece of property not far from our original home and started building in December. We moved in finally at the end of May, but had to stay at my sister's house as we had to be out of our old home May 15th. We love our new place, and Tim has so much room to buzz around in, as well as there is a really good view. The grant that we got from the VA went a long way, and we got a good price for our other home as it was in a very good location. Would it be possible to do something similar, and you could even build another large garage for your husband's cars, you'll need one for the wheelchair accessible van that will eventually be needed. That is a whole other story, as we had to trade my husband's truck in to help differ the cost, and again the VA has a great grant for that as well.
 

Nuts

Extremely helpful member
Forum Supporter
Joined
Feb 23, 2014
Messages
2,564
Reason
Lost a loved one
Diagnosis
01/2014
Country
US
State
NC
City
Littleton
I just reread this thread. I'm also new here, and can relate to having to step up after years of being cared for by a wonderful husband--my go to guy. Right now he's focused on providing for my future while I am planning for him. I know I will eventually need to take over the things he's always handled, but the challenge is in reassuring him that I will be ok while not rushing to assume responsibilities that he can still handle. I too don't want to rush my husband into a wheelchair, but want him safe. Our children, however, are grown. I'm so sorry you have to face this at all, but especially at this point in your life. How are the kids coping?
 

david ray

Member
Joined
Feb 28, 2014
Messages
16
Reason
CALS
Diagnosis
6/2011
Country
cr
State
costa rica
City
san ramon
Hey there.1st read the book Hope Springs eternal.In it is the wise words,let the patient decide whats best for them.in the regards of a life changing experience? you are in for one.It doesn't get better but if you can take in the smiles he gives and the little things that went unnoticed that now can give you a small spark of joy you can make it threw this.my wife was diod.2011 of june.what a shock! we lived in Ca. and moved to Costa Rica.the house we bought doesn't have stairs so if he is being difficult tell him to walk up them himself.i learned that babying doesn't do much good.hes not the only one dealing with this thing.I am learning something new almost daily and not just from literature or dead beat doctors.hang in there.take the good moments and try to give yourself a break.YOU CAN DO THIS.I have and still do.David Ray
 

affected

Guru status reached
Joined
Apr 26, 2013
Messages
13,500
Reason
Lost a loved one
Diagnosis
05/2013
Country
OZ
State
AU
City
lala land
There is a fine line that we walk.

My husband was so stubborn about using it or losing it that he had 2 serious falls and did damage that never healed. I had to tell him that I was not prepared to have him die in a pool of blood on the floor in front of him and get his kids involved in conversations.

Not long after his legs declined so rapidly he accepted help, and now he isn't walking anywhere really.

How are you going with it all wildemom?
 

david ray

Member
Joined
Feb 28, 2014
Messages
16
Reason
CALS
Diagnosis
6/2011
Country
cr
State
costa rica
City
san ramon
My heart feels for you.My wife is in the late stages now and cannot do any thing for her self.She was a marathon runner so we always stayed fit.Stubborn can be a benefit but also a determint
 
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