ALS Diagnosis Confirmed Today

[gjbuddy]

Hello all,

I had my clinic visit today at Ohio State Wexner Medical Center. I've had 6 MRIs, 2 EMGs and lots of blood work with two different neurologists.... all fairly normal. So today my diagnosis was confirmed. Its ALS. My husband and I were prepared for the news. We had the same diagnosis in July but went for a second opinion. I got signed up at the clinic and met with a breathing specialists. All is well there. I'm above normal. All those years of aerobics paid off. Then met with a care service coordinator with MDA. She will help with all medical paperwork, finances, etc. Through a grant to OSU, MDA covers all medical costs not covered by my insurance! One good bit of news.

The next thing my husband wants to address is getting us moved to a one story house or condo. I hate the thought of that. Moving is exhausting even when you are at your best. We live in a two story and my husband is really scared about me using the stairs. I'm doing ok with stairs right now. I take my time and hold the hand rail. Does anyone have suggestions on how we might stay in our house?

gj

 

[Nikki J]

I am sorry for the confirmation of your diagnosis.

If you must move the sooner the better. If you want to stay where you are you should look at 1 stairs both inside and also outside. Is it reasonable to have a stairlift and ramps? The thing about a stairlift though is that if you lose torso strength it won't work for you. Is there somewhere downstairs that could be a bedroom?
2 accessible doorways are they wide enough for your wheelchair?
3 bathroom/ shower. You will need space to maneuver and a roll in shower. Just being able to squeeze a wheelchair in is not enough there needs to be room for your caregiver to do transfers.
Your size and your caregivers' strength matters too. I think a majority of people end up needing a lift some sooner than others. Maybe the MDA can advise you as well?

There are members here who have chosen to move. I am sure they will reply soon

Again very sorry for your news
Best
Nikki

 

[ottawa girl]

Oh GJ,

Very sorry. I'm sure it was hard to hear the diagnosis in July - but hearing it the second time, in some ways, is even worse. Glad you're getting support and that your breathing is terrific.

My move story - I was diagnosed April/12 - we lived in a two level condo until May/13. I managed the 15 dastardly steps (upstairs bathroom) but I gotta tell ya, the last month was physically draining. I asked the same question to my neuro in August/12 ... "When should we move?". He told us firstly " death is not imminent" and I'd likely be ok with stairs for several months (but no real way of knowing). We took the chance and stayed as long as we could - preparing to sell it - completing an enormous purge (was actually easier than I thought) at a leisurely pace. In between we traveled, a lot. Our move was tiring but with the gang of family & friends pitching in, I recovered in a few days.

If you have a house, you may be able to adapt it to your needs, be it by enlarging or re-fitting. There are lots of options available these days. There are great websites dedicated to ADA approved remodels. Of course these could be large protracted projects, depending on your house - and living in a construction zone can be, in my mind, as daunting as the prospect of relocating.

 

[gjbuddy]

Thanks for the info. It's only my husband and myself, no kids to help with a move. My only sister is out of state. I know my husband is facing some big challenges in the future. We both still work. I'm 58 and he is 60. Retirement isn't in his future for a few more years. Our house is paid for so it would be nice to stay. We have a 1/2 bath on the first floor so I already limit the trips up the stairs. My husband will take stuff up and down the stairs for me so I don't have to. Once I go upstairs in the evening... I'm up for the night. I will bring this up with the MDA coordinator or our local ALS chapter. Too much to think about!

 

[hjlindley]

We decided to put in addition onto the house, that has a great deal to do the neighborhood values of the properties. Mine is been slow progression, and we do have a bedroom on the 1st floor. But I still have to walk to the bathroom and I don't how much longer. Really think this through. Many ALS patients die from falls. Our legs don't always give us warning before they collapse. Perhaps you have a closet for an elevator?

Take a week to take this all in, talk to the ALS social worker, and feel free to talk to us. Your life isn't over yet. It's just different. We are here for you.
Hollister

 

[zoohouse]

First I want to say that we are sorry that you have to join our ranks, but welcome.
When Tim was diagnosed we were living in a 3 way split level home, with no bathroom on the main level. There was a bathroom off the the master bed room, and a bathroom with a shower on the family-room level. Tim moved to Canada in Oct/12 and by April/13 we had to move our bed down to the family-room, because Tim could only manage the shower. We did sell the house, which I had owned for 27 years and started construction of a new home Dec/12. We finally moved in at the very end of May/13 and it was not a day too soon. Thankfully we had ceiling lift system installed right away, because he progressed so quickly that he could not transfer anymore without it. We were actually using a portable lift, and had to move into my sister's home for the last 2 weeks, before moving into our new house as there wasn't enough room in the family room for times electric chair and portable lift. We were also using a commode chair, as the doorways were to narrow, and bathrooms too small for the lift. So as you can see there are a lot of things to consider.
1) 36" door ways.
2) Larger bathroom, and bedroom that allows off loading from an electric wheelchair to bed, or toilet, commode shower chair.
3) A lift system for transferring when mobility is gone.
We actually had to live in the house with some construction going on, and it was far more stressful than dealing with the move. The other consideration is whether you present home has appropriate joist system for ceiling lift, and enlarging doors.
It is most definitely expensive to sell and build, but we thrilled with the accessibility that we have for Tim. We have a very open floor plan, and I like it because I am not being blocked off from the places I need to go, by Tim's chair.

 

[ECpara]

Dear gjbuddy. So sorry for your diagnosis! It's a tough one. My husband was diagnosed Feb. 2012. I hope by sharing our experience you can use it in your decision making. We put our large 2 story house in NC on the market the next month after his diagnosis. It finally sold in October, we moved to GA (near our grandkids) in Dec. to temporary quarters and had a house built. We are SO glad we did. We're one step ahead of this disease. We were in our new house by June of this year. We designed the house to be one floor, all hallways and doorways 36", hardwood floors, a totally handicap accessible master bathroom with a roll-in large shower and electric outlet by the toilet for a bidet seat, and not more than one step into the house from any entrance (we will use a small ramp later if needed). The other nice thing was, when we moved into the house he was still totally able to unpack boxes, organize his closet and the garage, not to mention enjoy the backyard and yard work. If we waited to make this decision he might not have been in a position to help and it would all be on me. If you plan on a move, act quickly for both your sakes! This disease has no guarantees when it comes to progression. So far my husband is enjoying the slow progression to his limbs, he just can't talk or eat. However the telltale signs are there - his right leg and both arms are becoming very thin. It's just a matter of time now. My best to you during this difficult time. God bless! Nancy

 

[FirstMate]

My husband was diagnosed in September 2013 and we thought about selling our 4 level split that was built in the 60's but the thought of moving was daunting. We decided to stay and make modifications. We moved out in January for about 6 weeks while the work was completed. We moved the master bedroom to the family room and converted an in-home office to a wet bathroom. We had a wheelchair lift installed and a ramp into the house. The best investment was a bidet. Worth every penny! We are so glad that we decided to stay in our home of 28 yrs. Our neighbors have been very supportive and I don't think this would be the case if we had moved. It's been a fast progression and we have tried to stay one step ahead of this disease. Good luck with your decision.