All too fast

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Janbrit

Active member
Joined
Jul 16, 2014
Messages
81
Reason
PALS
Diagnosis
08/2014
Country
Uk
State
Kent
City
at the back of beyond
Having a tough time this weekend, went shopping, assistant passed me a bag containing just 3 small jars of jam and I almost hit the deck! Everything is such an effort, walked up a slight gradient and the legs just wanted to give up, very depressed right now, this illness is robbing me of everything, from being an ultra marathon runner to someone who can barely struggle 50 yards, 8 short months from my first fall and I am now like this, is it usually this quick?
 
The rate varies widely with each pals. Two years ago I was working an average of 13 hours a day between my public job and my side business. A year ago I could still walk everywhere but was slow, could still eat. Now, I'm in a wheelchair and would likely choke to death if I tried to eat. Others seem to progress much slower.
I suggest getting a power wheelchair and using it anytime you go out. If you still feel capable of walking around the house fine but use whatever aids you need to prevent anymore falls. With leg onset you'll need the chair sooner or later anyway and you want to get some practice time in with it as there is a slight learning curve to keep from tearing the house apart
 
learning curve to keep from tearing the house apart

Hehehe. You got that right. There were dents and smashes all over my house from the wheelchair. I eventually took a sledge hammer and a power saw and simply removed some parts of the walls so we could perambulate around the house. Landlady wasn't happy at all. :)
 
Definitely keep yourself safe and conserve your energy. I really believe that if you push yourself to the limit you speed progression. At least it feels that way. And falls almost certainly speed things up.
Dalvin is so right. We are all different. Some people say start fast finish fast but that does not seem true of my sister who was fast at the start but is still here 3 years into it.
It is hard when you are used to being so strong but the more you fight things that will assist you the harder it is. Tell your care team how hard it is to get around
 
it all varies from person to person. I am sorry--it is scary. You really need to look into something to help you now, before it is an emergency. do you use a rollator or a cane? I would suggest you get an inexpensive scooter when you go out to protect yourself from falls and conserve your energy. my husband used one even in the house for about a year until he needed a wheelchair.
 
1. don't fall!
2. stay away from sick people (excep us)
3. take vitmins
4. shoot for 3,000, cals per day

hope for slow progression

try rizuloe -- nothing ventured nothing gained.
 
Janbrit,
It sounds like what I have been saying and it is really difficult! Last September I was running and had tons of energy. Now it's hard for me to get from room to room! Everything IS such an effort! I try to have a positive attitude but then I have melt downs regularly. This is a very difficult diagnosis to live with. In the last 3 months I have really gotten worse in my legs.

Lynne
 
Wheelchair delivered today, saw the Consultant on Monday who gave a bad prognosis :(. Off to the hospice on Friday for a visit and talk, going on b-pap machine to assist with breathing. Cannot believe that from firm diagnosis at end of August I am now planning my end of life care, so sad, so much to do and so little time it seems. Dr has ruled out my planned visit to Disney in January I hate this disease!
 
>Wheelchair delivered today

good ... use it! #1 donj't fall, #2 stay away from sick people


>going on b-pap machine to assist with breathing.

should help, dig aroung here for trilogy, too


>Cannot believe that from firm diagnosis at end of August I am now planning my end of life care, so sad, so much to do and so little time it seems.

ALS sucks!


>Dr has ruled out my planned visit to Disney in January I hate this disease!

doctors suck too ... screw 'em, go to Disney, just don;t fall!
 
I am sorry. It is good that you are getting equipment. I know it feels like a bad thing because you need it but it is good to keep you safe and support you so you don't use as much energy. The bipap can really help you feel better and sleep better.
It has been terribly fast for you so far which is horrible. I pray you stabilize now
 
Janbrit, as things start to settle down and you get used to your new normal, you may find you can take that trip to disney. You may need to make some changes to how you do it and such but dont give up on it just yet. The pals and cals on here are a stubborn bunch and we persevere. It may still be possible.
 
Disney depends on your rate of progression. The doctor can't really know how good or bad you'll be doing in January.
Most anything I plan for 2015, I get trip insurance.
Disney is actually set up pretty well for mobility impaired.
Have CALS drop you at loaner wheelchair location in handicapped parking lot.
Have CALS push you to scooter rental location. $50 for the day and you're good to go. Preferential treatment for scooters at a few rides, and always easy to get from scooter to ride.

The hardest thing is getting on and off the elevator that goes to the Soarin' ride--but it's worth it.
If it's something you want to do, don't give up yet. Remember trip insurance or cancellable hotel reservations.
I hope your progression slows down. Good luck!
 
I agree Disney is pretty handicapped accessible.
I would rent a scooter or power wheelchair for the duration. They will deliver to your hotel. There is a small risk of renting by the day of them running out before you get there plus it is easier. Tips for it. Charge fully before leaving for the day. Charge it in the middle of the day if you are out for a long time. Have a waterproof cover for the ignition area in case of rain. ( experience speaking for all of the above)
I think Disney does not give the same preferential treatment to the mobility impaired that they used ito(jumping all the queues) unless they had a change of policy again?but there are rides that you can actually do in your wheelchair if you can't transfer. If you can transfer you can do almost everything. And stay on property. Probably at a monorail hotel. Easier than bus but it depends where you want to spend your time
 
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Rapid progression just doesn't give you a chance to absorb anything before you are moving to the next bit. I so understand how that feels!

Planning anything even a month away is so difficult because you don't know what part may progress in that time to change plans.

I think it is great how others here have had experience with Disney land to tell you so many tips of how it could be done. I can understand that with rapid progression it's hard to know where you will be at in January.

Is there any chance you can change the plan to get there say in November instead?

Wish I had real answers, but it does SUCK.
 
>but it does SUCK.


Ditto that!
 
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