Am I thinking too far ahead? looking for replies from a PALS and CALS perspective...

[amyst]

I have read here many times to stay ahead of your needs. I have read about PWCs a lot because I started with right foot drop and that leg is progressing, moving up above my knee. I use an AFO on that leg but it gets weak fast and it' starting in my low left leg. I have fallen once. I'm very careful now and want to walk as long as possible. I guess my next option is a cane or walker.

Last night in casual conversation I mentioned to my husband that I have been reading and when we choose a chair that i think we should get one that raises up and started to tell him why. He just looked at me scared and confused. He told me I'm reading too much and obsessing about things far down the road.

We seem to be at different stages of accepting our new future. My instinct is to learn everything I can and know what is ahead and talk about it. Although I do want to have time, especially around others, that ALS is not even brought up. And I also don't want to overwhelm him as I know this is as devastating to him as it is me.

His way is to not talk about it unless something needs to be addressed right now. He is supportive and always there to help me with anything accept talking about future issues.

I guess I'm asking for opinions on whether I am thinking too far ahead. I don't want to be in a chair wishing I didn't focus so much on it while I could still walk. I also don't want to be needing a chair and not be mobile because I didn't prepare, or be in a chair that's not right for me.

I guess I'm struggling to find the right balance.

 

[glupavomomiche]

Start the chair process now! I'm similar to you... right leg is pretty weak and I have right foot drop with a brace and left leg is just starting to show symptoms. I mentioned at my last clinic day that I was interested in a powerchair. Since the spasticity is getting so bad in both legs, the doctor went ahead and started the process. It's only been two months since that visit, and I've had a lot of changes. At clinic I could still walk with just my brace. Now, I have to use my cane in the house, a walker everywhere else for short distances, and long distances are completely out of the question. VERY GLAD we started the process already, and hopefully only a couple more weeks before the powerchair gets here. It's annoying and frustrating to have someone pushing me in the manual chair!

It DOES pay to think ahead, so don't hesitate! Even if hubby is uncomfortable about it, you are the one being smart and you know your own needs. And nothing says you have to use it all the time once you get it... but it's good to know it's there when you need it! Good luck!

 

[Miss]

You really cannot think too far ahead. We some equipment long before we needed it, and other eqiupment we received in the knick of time. There is just no way to know, so you want to err on the side of caution. If you have fallen, it might be a good idea to go ahead and start using a rollator. At It will protect you, make your life easier and just possibly help your husband deal with the transitions to come. (At some point, you will probably have to switch over to a regular walker because the rollator will "get away" from you!)

I wonder if you are in my area of TN? My husband was registered with the West TN ALSA - Beth Bumgartner.

 

[Susan10]

Since it can take 6-8 weeks or 6+ months to get the pwc, start now. You've gotten some good advice here from your friends. take care.

 

[brooksea]

I know you were recently diagnosed, so it will take time for this to sink in for your husband. But, he will need to take his head out of the sand pretty quick! You will need him to be an advocate for you as y'all take this journey together.

I agree with everyone else, put in for the PWC and any other equipment sooner rather than later. Get whatever is allowed by your physician and insurance on order right away.

Good luck to both of you!

 

[cervus]

You're definitely on the right track by reading up and staying a step or three ahead of this disease. An ALS diagnosis is so difficult for PALS and CALS and their families. Your husband will hopefully come around soon. Take care. Yasmin.

 

[CathyP]

Amyst.....I could have written your post....I am going through the EXACT same thing!

 

[Floyd Parton]

I am very new to ALS, but as best I can reason from what I have read.......it is always best to plan ahead.....and that is what I am trying to do.....I guess my motto is "Hope and pray for the best, but plan for the worst".....I have weakness in my right leg and right arm.....I have tried to read about progression rates.....but it seems everyone is different.......I really want to fight this ALS.....but I guess we all do......I know my body is trying to resist.....I take vitamins and try to eat well......I was 234 when this started.....I am 219 now....so over 6 months, I lost 15 pounds.....some of it was before I realized what was happening to me......apologies....I have kind of drifted off your subject.....but again I think planning ahead as much as possible is wise........cheers....fp

 

[HelenL]

My hubby gets that panicked deer in the headlights look in his eyes when I talk about what I'll be needing and when...he just doesn't want to hear it. Last week we went to NH to pick up a hoyer lift that another cALS gave to us (thank you 6thKid!) and my hubby was kinda freaked out by the whole thing and rushed me out of there.

I do have a loaner pwc but still use my scooter more often, as I don't feel "sick" when I'm zipping around the house in that. I did finally get one ordered for me. Remember if you end up needing to go hospice sooner than later, even if only for a short illness and then go back to "normal" (whatever is normal for us), insurance won't pay for a pwc.

 

[momap53]

Sometimes it takes awhile for family members to fully accept the reality of the diagnosis. I look at new equipment as a means to maintain as much independence as possible as safely as possible for as long as possible. Get your rollator. With losing strength in your second leg you'll find that your balance becomes more precarious. Even tugging open the door to the fridge can throw you off balance. Order your PWC as soon as possible. Falls can be fatal or leave you more severely impaired physically than the "normal" course of your progression. I find that I am less anxious having equipment on hand prior to it becoming essential. It gives us time to acquaint ourselves with it and become comfortable with it.

 

[brooksea]

I would like to add that I think a serious fall is actually what accelerated the death of my husband. So, please do not hesitate to get that PWC. You may need it just because you have no energy to walk, even though you are physically able.

 

[hn7609]

Everybody above is correct in that it is never too early to start planning for your equipment needs. That said I think the roadblock you will hit will be getting insurance to pay for the $25,000 chair this early in the game. If you are still walking without even a cane then your Dr. is not likely to write the order for the chair. A nice detailed letter listing all of your needs from the Dr. will be required before the Ins. will fork over money like that. A good bet would be something used from Ebay or Craigslist or from the ALS loaner closet. The first chair that you will need doesn't have to have tilt, recline, lift, etc., those options will help when you are spending most of your time in the chair. Your first chair will be something to get you around in. It would be a good idea to have the first chair ready & waiting for when you need it. You are correct though you will need the deluxe chair with all of the features before you're done on this journey. Good luck

 

[notme]

No you're not thinking too far ahead. We have one member that has been trying to get her chair approved for months now. Start the ball rolling!

If you have foot drop--starting the process now isn't amiss at all, in my opinion. It can take ages and ages. And yes, get the lift, too!

Can you explain to your husband that you need to be able to talk about your concerns with him? It must be hard to try to keep things to yourself that concern you.

I'd be looking at all the equipment and starting to get the orders for them sooner rather than later. One bad fall and you can break something~! You don't want to be too weak to walk one day and not have a chair to slip into!

 

[lgelb]

I would phrase it as it helps so much to talk things over w/ him and so to know that you will both be prepared when need be.

 

[nan musser]

I was diagnosed with PLS 11 months ago....The first advice given to me was to stay off the internet except for an ALSA sight like this one. My husband is like yours and thinks I'm going to imagine things are already happening if I read things on the forum. I found it to be just the opposite. It is very helpful to me so when I visit the forum I just keep the info to myself unless I feel he would benefit from it. He has been wonderful and thinks about it alot more than I think he does. I went on extended medical leave 4 weeks ago and so happy I did. I want to plan ahead, yes, but I want to enjoy the present. We have a wonderful ALSA group in my area and for that I'm thankful. They are very proactive in helping me with every present concern and future concern.