First ALS clinic visit

[Mlock]

Today I had my first clinic visit at the Huntsville ALS Clinic. We were there from 9:30 AM til 3:30 PM. But I saw everyone: PT, RT, OT, dietician, speech therapist, and social worker and MD. And I was evaluated for a power wheechair. They also recommended a Trilogy. I am wondering if anyone has some advice or suggestions about getting used to the Trilogy. I read some previous posts about alarms and such going off.

The ALS organization apparently will give me a loaner pwc until mine arrives in 30-45 days. Can't say enough good things about everyone at the clinic. They were very kind and seemed on top of everything.

People coming Saturday about making my bathroom wheelchair accessible. I want a roll in shower, bidet, ADA sink. Any other suggestions?

Wendy

 

[Nikki J]

I am glad you have a good clinic.
Laurie is our go to person for respiratory equipment issues. If you have problems with your machine I am sure she will help you figure it out.
To get used to it the usual advice is try it first while watching tv or something After you are accustomed to it the transition to night is easier. If your first mask does not work well for you there are lots of options so post and people will share their thoughts

Great that you are getting the bathroom remodeled. Do a search. There are lots of threads and some with pictures. People have done amazing things.

 

[Mlock]

Thanks, Nikki.

 

[gooseberry]

Are you a vet? If so here is what I would suggest....grab bars that fit you hands around the toilet. A bidet seat is in the $500 range but worth it. I would do a roll under sink for you and think about them for all sinks. You can just cut out the bottom and leave the doors on.with sliding tracks so they recess. Splurge a little to get what you like. We went with kohler faucets with 2 handles because of the lifetime warranty and my pals gets burned with lever faucets.

Flooring is recommended to be solid surface. Look at the entrances and exits from your house. Make sure you have very little threshold.

Think about doors and windows. Can you open them. Prosthetics can supply remotes and sensors for some window types and door types

Prosthetics can supply you with grab bars,ramps etc if you are a vet. If you arent the als association can lend them to you.

I would make sure your shower has no threshold, can be rolled into, and you have a handheld showerhead. Grab bars are a must in the shower.

Trilogy....laurie is our go to person but basically you can shut off all nonessential alarms. My husband is claustrophic and has found a mask that works. He uses the nasal pillows for his waking hrs.

Things I love about our remodel, :
Size of shower area
bidet seat warmer and the remote
the granite countertops which add a little class
stain protection grout for all the grout

roll out baskets from all of our cabinets in the kitchen and bathroom. Each roll out drawer holds 100 lbs . I purchased them and installed them along with a roll out garbage can.

We went for upgraded mirrors,lights and faucets. I purchased those and the contractor installed them.

4 door refrigerator. French door model with door within a door on top, freezer on bottom

Things I am still deciding about:
New ceramic top stove with controls in the front. Buttons go on easily. Convection oven is nice to have
hardwoods require a fair amount of upkeep for them to look nice.
tile is bathrooms has a coefficient of friction over .60. It still feels slippery to me.


I would say to make sure you get the elevate feature on your chair. My pals uses it a lot. Good luck!

 

[scaredwifetx]

I am glad you had a good first ALS clinic. It makes a big difference with us and helps me to understand what is going on with Steve.
You have a lot of great suggestions for the bathroom and there are several pics. Ours was completed right before Thanksgiving and now that its finished we enjoy it. The bidet is a wonderful feature. We found our with the best review rating and price on Amazon. We bought an ADA approved high profile toilet and added the bidet. We have bars in the shower and one right outside the shower. We had our vanity custom built with one roll in sink and one not. The doors can close and when he is using it they slide back. We kept safety in mind but also did our best to make it work great for both of us and with special touches looks great and will also be great later.

One thing that I do not see in the comments is the lighting. We put overhead lighting throughout the bathroom. One has a heater bulb in the shower area and right outside the shower. We also replaced our fan with a heater, light and fan combo. PALS get cold easily. Add special touches, beautiful paint and make it work for both of you.

We also had a roll in shower put in but the water would sometimes end up on the bathroom floor. I was able to find a installable rubber threshold on line that wheelchairs roll over and can be stepped on not over. We installed it and put clear silicone all around it and use a weighted shower curtain. We now don't even get a drop of water on our floor. We did not put in glass doors because I was afraid of safety issues. We also used touch switches for the lights and installed two battery led motion lights that come on only at night when walking by. one at entry and one on wall above toilet. They are wonderful and Steve about turning on the light. Amazon. let me know and I will send you info if needed.

Good luck.

 

[gooseberry]

Scared wife those are great ideas. I never thought of the heating lamps. Steve gets cold when he showers so I am buying a space heater today. We installed different light fixtures but in the same place. We dont have the drain issue but I think its because we have a 4 ft wall that is tiled and a 3 ft piece of clear glass on top of it to keep light.

We didnt go the motion sensor route for lights but I am going to see our options. Steve goes in and never turns the light on which makes me crazy. Our bidet is set up like yours but has a blue light that comes on when it is dark.

Like you said, it is the small things that really make it beautiful and work for everyone. We got new towels because our other ones were wet before I got him dry. Bath sheets have been great.

 

[affected]

I bought heaps of towels and even colour coordinated them for parts of the body.

I found several smaller towels worked well, especially keeping him warm. (but I do have a heating light in the bathroom which is really helpful!)
So I would dry his hair and back then leave that towel draped around his back/shoulders.

Then one towel for his legs and feet, and then fold it onto the foot rest of the shower chair and could put his socks on and they didn't get wet.

Then one towel for torso and arms.

Then the different coloured towel for his bum, and a nappy bucket to throw that towel into once all was done.

I reckon the bath sheet sounds great, except I'm sure I would have had it soaking wet by dragging it on the floor as they are so much bigger lol


Tillie

 

[gooseberry]

Tillie I would get confused with all the choices of towels. Lol

 

[affected]

lol gooseberry, it was simpler than it sounds. Just a pile of towels.

The brown ones were always pretty clear that they were for the bum, and they didn't really show skid marks either ... :shock:

 

[CiCi]

After hubby gets out of the shower, I give him a quick rub down and then use the hair dryer to finish up. He loves this.

 

[affected]

Ha! Love the hair dryer idea so long as his skin doesn't dry out, but I'm sure you compensate for that too.

 

[CiCi]

We do use lots of moisturizing lotions.

 

[Mlock]

Thanks for all the great ideas! Hadn't thought about the touch lights and lights that come on at night when you past them. Had not thought about heater also. Work starts in 2-3 weeks. I may need a new frig because mine sticks out and may interfere with the wheelchair. Loner chair is coming next Monday! This is good because I fell last week trying to get to my car! There I was lying half in the house and half out of the house. My grandson and daughter in law were nearby and were able to get me up!

 

[gooseberry]

We bought a 4 door samsung . It is a french door model with freezer on the bottom. The upper rt hand door opens two ways. One way is to give you access to pullout door bins so it helps the refrig maintain temperature. The second way it opens is like a normal door. We use this a lot.

Got a slide in electric range with duo oven and convection. All the knobs are in the front and there is a touchscreen. Love how it cooks but it you bump the buttons, you can accidently turn it on. But now I love it!

I purchased and installed roll out drawers in all the cabinets so my pals can access all the cabinet space. I have one drawer with all his snacks