Good advice, Shomy. I'll keep it in mind. This is my morning 'off' so I'm going to go look at some wheelchairs and then, this afternoon, I HOPE I can get my husband into the store with his walker to try some out. We'll probably rent one for a month before deciding what kind to buy.

Not much respite in taking care of the LO's needs on your morning 'off.' That's the way it is with this. Only so much time and never enough for ourselves. You are in my thoughts today. Nan

Pat,

Mom has an Invacare that was fitted for her by the wheelchair supplier's specialist and her occupational therapist while she was in rehab, recovering from her broken shoulders. Robin and Irene are right on about having it fitted to Derek and to your home and situation. A lot of people don't think about one wheelchair activity that is really important to caregivers, whether at home or in an SNF: self-ambulation. That's the ability to move around an area while sitting in the wheelchair and "walking" the feet. I'm sure you're familiar with this, but not everyone thinks about it at the time. This is a big reason that chairs need to be fitted so that the feet comfortably reach the ground.

Aside from the Mobility Specialist, the Occupational Therapist is a great resource.

Kate

Thank you. We're still in the research process but picked up a 'loaner' today. Will ask the doctor for a PT or OT in-home assessment. I'm not sure he will be able to propel a chair independently at all for the same reason he is sometimes unable to walk. Signals to the feet/hands just don't connect. When he's able to propel the chair, he is probably also able to walk. But it will be a way for me to get him from point A to point B which I am unable to do now except struggling with his seated walker.

In order to get a lightweight chair (that utilizes titanium wheels, for example), the patient must be said to be able to self-propel the chair. Medicare doesn't pay for lightweight chairs for the convenience of the caregiver.

Thank you, Robin. I found out today I can easily load a 'regular' w/c into the car so I guess I don't need a lightweight one, after all.

The reason I had first thought a transfer chair might work is that he can't propel it, anyway, but found that those smaller wheels are hard to push on a carpet or on uneven surfaces.

Pat, a friend told me a few months back that Medicare would cover a wheelchair or a motorized version chair but not both. Since the motorized ones are so expensive, it might be worth looking into whether that is true or not, in case you might ever need the more expensive kind for your husband. Just a thought.

Pat, Derek could never drive a motorized wheelchair. Even if he could manage the controls [doubtful] he would be running into things all the time. We picked up a regular 'loaner' wheelchair today. I posted the following on the LBD spouses web site:

The wheelchair we picked up today has proved interesting. "How do I make it
go?", he asks. Well, now, I didn't get it for him to 'make go', I got it for me
to move him around in, but I patiently showed him how, with the footrests off,
he could use his feet and, with his hands on the wheels, move it forward. Of
course, he couldn't do it so he's lost interest in it altogether. With all the
physical decline he has also declined cognitively so it's quite impossible to
tell how much of his immobility is physical [e.g., neurotransmission deficit]
and how much is forgetting how.

And, of course, it's all variable. He walked with a cane from the car into a
fast-food place with me today for lunch. However, it took about 15 minutes for
me to get him into a seat. Funny thing was that he is totally without
inhibitions now and doesn't get embarrassed in public like he used to. I might
add that it doesn't embarrass me, either. People give us nice, sympathetic
looks.

We are still early stage, so I guess that is why I have had to think about regular vs. motorized wheelchairs. John shows more physical issues (parkinsonisms) most of the time, but can still do that "I don't know quite how to do this thing" issue as well.
He responds much better to the cognitive meds than he does to the parkinsons ones. And he gives up quickly when he cannot master something.
Those of you who are farther along than I am must think I am clueless, and offer too many "pat" answers, but I am struggling just like everyone else at the stage where we are living and desperately want to prolong Stage One as long as possible.
I hope you get the right mobility solution for your situation.
PatS

Pat, I don't think you are 'clueless' at all. When my husband was in Stage I, I was the clueless one. I literally had no idea what was wrong with him, with us, with our marriage. He was defiant about his condition and I could not persuade him to see a doctor about what I saw were definite neurological problems . His daughter-in-law, who is a neurosurgeon in Seattle, finally got him a consult with a colleague and he agreed to go.

This disease is difficult at any stage. I look back, maybe two years, and if someone had told me then I would still be doing this two years hence I would have run shrieking from the room and maybe jumped off the nearest cliff. But here we are, still living in Lewy Land. If there is one useful thing I have learned from others and from our experience it is this: Don't look too far ahead. Take a day at a time and make the best we can of it. It's just too depressing to look into the future.

That's funny, Leone! And so true!

Pat (Mockturtle),
I certainly agree with not trying to look too far ahead. I also agree with running shrieking off that cliff, but somehow here we are, another day! I'm glad I don't have a crystal ball, I might be tempted to take a peek. I have one thing to add about the wheelchair: make sure it's comfy. They make some add-in pads that are well worth their cost. Ken's boney butt and spine can't handle the wheelchair for very long without the extra padding. If only I could share some of mine..........Sher

Yes, Sher. We already have a nice gel pad that he used to use in the car for long trips. I think I'm going to take him outside in it today if it doesn't rain.

You all make me laugh!!!
One day at a time is the most profound lesson of this disease so far, in my opinion.
And we could all use a little extra cushion whenever possible, especially, Sher, when it is removable, huh? (I am trying to remove my "cushion" the hard way during holiday season and not having much luck--haha.)
Take care,
PatS