Finding easy fun things to do

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Thanks everyone. On the way home I took a detour to Mount Vernon in VA. Washingtons home is beautifully situated on a hill overlooking the Potomac. We used a loaner wheelchair and I had the experience of pushing up slight grades on a gravel walkway, and also going over thresholds. A kind person told me to go over thresholds backwards. Did not think of that! Then we went home. 9 hours from Richmond to Mt Vernon to home. I drank a fair amount of coffee, and I don't drink coffee.
I have ramp specialist coming tomorrow. I have requested a wheelchair evaluation/rx (but have no return calls). The ALS Association are the primary support group for us. Not the hospital clinic. Still thinking of leaving BigH and switching to RWJBarnabas NJ.
 
Mount Vernon is lovely. Glad you got to go. If your clinic is still unresponsive I would definitely make an appointment elsewhere You don’t have to tell hospital one anything until you decide. Don’t forget about Joan Dancy Foundation As a local resource
 
There are definitely tricks to things like thresholds with with wheelchairs.
I remember one time I was approaching one, and a random, well-meaning man, grabbed the chair from me as I went to begin turning around. He gave a really hard 'helpful' shove to get the chair over one. He nearly took the ends of Chris's toes off and my heart literally stopped for several seconds.
 
Nikki. I have spoken with JD Foundation after this forum suggested. They were very helpful. Thanks.
I also found oley dot org that focuses on tube feeding.
 
Affected. I almost hurled Tom to the ground trying my ram approach. I stopped raming. If Tom falls, and he does. It takes about 15 mins to get him back up. And we laugh a lot in the process.
 
We went with a metal ramp and it is very nice but it was expensive. I wonder if a wood one would have worked just as well. We were told wood ramps require a permit because they are attached to the house and metal ramps do not. At least where we live. We have the ramp in the garage and this has worked out okay.
 
I am glad you had such a wonderful trip. I have been to Mt Vernon many times and always enjoy it.

As you learned, pushing a wheelchair can be a bit limiting. On my last trip to Yellowstone without a power wheelchair (in 2014), we borrowed a wheelchair from the visitor's center and my sister pushed me around the boardwalks in the Old Faithful area. That was trying for her and occasionally for me as well.

After that trip, I started the process of getting a power wheelchair. I found that power wheelchairs have changed my life! I now have five!

I sure thought getting a power wheelchair would be an admission of defeat and would dramatically limit my ability to go places. It is just the opposite. Having a power wheelchair has allowed me to conserve energy so that I can do more of the things I really want to do. And, I have found that I can go many places with the power wheelchair.

I have a few threads about my experiences buying and upgrading power wheelchairs. In short, be proactive. Pick the kind of wheelchair that will work the best for you, as opposed to the kind the wheelchair vendor proposes. I have found that front wheel drive wheelchairs are my favorite. While I also enjoy rear wheel drive charis, there are very few practical choices for those in the US. I avoid mid wheel drive wheelchairs, because they can suffer from caster jerk and can become more easily stuck when riding on uneven terrain.

In the US, wheelchairs are classified into several groups. Most private insurance and Medicare will typically only fund up to a group 3 wheelchair (such as a Permobil F3). I find that group 4 wheelchairs (such as a Permobil F5) better suit my needs. Private insurance bought my first group 4 wheelchair, but I have bought 4 others off of craigslist.

I have used a lot of public transportation. There is a regular bus service that stops within a few hundred yards of my house. The buses run every 30 minutes in the summer and every 15 minutes in the winter (I live in a ski area). The buses are free and every bus will accommodate my wheelchairs without problems. They also have a van service that I can call (with 24 hour advance notice) that will pick me up at home and take me anywhere in town I need to go. It has been great.

I have also ridden busses at national parks, such as the Grand Canyon. My wheelchairs fit on those busses as well.

I have taken four flights with my wheelchair. That can be more of an adventure, but was worth it for the trips we took.

We purchased a used wheelchair van shortly after getting the first power wheelchair. I encourage you to get the wheelchair first and then get the van (if you are considering getting a van). Not all wheelchairs fit in all vans.

Wheelchairs have been very liberating for me. I typically put about 1,000 miles per year on my fleet of wheelchairs. It is great fun to do so!

Steve
 
You don't need an ALS clinic to write you and order for a PWC. All you need is a physician with a diagnosis code of ALS and you can call your local medical provider. They will have selections of approved PWCs and work with your insurance company to make sure you get it paid for. Sometimes, there are incentives. Permobil ate the cost of my PWC lift function. I also got some other add ins since I had fibromyalgia as a comorbidity. Upgraded cushions and arm rests.
Once the order is placed it might take up to three months to receive the chair. Meanwhile, you can get a loaner if your local ALS chapter has one. I'd get a loaner so both you and he can learn how to operate it. If it doesn't come with a manual, you can download one online.
 
So, follow up question on wheelchair. I am very early on—motor symptoms started 9 months ago with diagnosis in June , August and October. Disability limited to right arm but I suspect right leg will be weakening next. Considering buying an inexpensive folding travel chair for Amazon as an energy saver when we take our cruise from December through February. They have them that weigh only 40 lbs or so. I know they are no substitute for the proper power chair that I will likely need as the disease advances but for $1,000 or $2,000 oop it might serve as a bridge. Can someone comment?
 
You are correct to buy an interim mobility device rather than use insurance Who will be pushing you? an alternative might be a mobility scooter or cheaper electric wheelchair. Look on ebay etc as used mobility devices are commonly found. Look for a travel chair if you decide to go that route. Another option might be renting a scooter if it is specifically for the cruise. We rented a scooter once and power chair once for Disney.
 
For those with a hankering to go off road in a power chair, this looks like fun, though not available in all states.
 
I love the joyful travel updates! Our 35th wedding anniversary was in the spring, and I surprised my husband with a trip out west that started with Elvis renewing our vows in Vegas. Then we drove to Zion, Monument Valley, Moab, and Vail and flew home from Denver. I drove 1100 miles. So glad I took that on because he can no longer travel, and it is a great memory for us.

FYI- our power chair weighs 405 pounds. I argued with insurance and won the lift feature and a cup holder. Hell hath no fury like a woman whose husband has ALS!
 
I think 40lbs is a lot of weight to lift. I got this manual from Amazon. 399$

NOVA Lightweight Transport Chair with Locking Hand Brakes, 12” Rear Wheels, Removable & Flip Up Arms for Easy Transfer, Anti-Tippers Included, Black​

This wheelchair goes over transition areas very well -- better than the loaner big rear wheel chairs. I am 70 years old and I am able to get this in and out of the back of our CRV. We also have a Drive rollator that converts to a push with seat....but to sit on this is good only for short inside distances.

Ease of Going over transitions and secondary wheel locks (not just hand brakes) , Removable foot rests and Removable arms are all important.

Re the power chair...i was told you can rent a wheelchair van for occasional outings.
 
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