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bythesea

Active member
Joined
Aug 6, 2009
Messages
82
Reason
PALS
Diagnosis
02/2010
Country
US
State
NJ
City
Bergen County
My thoughts and best wishs go out to anyone with ALS

Of course the less than 10 miles to Columbia ALS took more than an hour and a half. I think we (wifey) averaged 15 miles an hour. Thank God for our new spend-down gift, a spacious and comfortable, automatic Honda

Irismarie, eat your heart out, I had a bevy of beautiful, young therapists. When I asked my wife why, she said it was just like her work everybody is younger (but, he doth protest, I am only sixty!).

Granted I’m not yet tube fed or sleeping with a mask but some signs were ominous. That test; " blow harder, harder.. ", was sixty something percent down from ninety percent last visit but it didn’t seem to alarm anyone (strange) but I now seem to have a persistent soft cough. Two nights ago here it was muggy and hot and I had the AC cranked high. I woke up in the middle of the night and couldn’t catch my breath, really scary. Thinking it was too cold I turned down the AC, took my Singular and sat up for an hour before falling asleep. Fine and dandy but my first asthma like symptom in many years.

The doctor wrote a script for a pulse-ox?

The dietician said I was nice and stout. The pt ordered a rollator-like walker to replace the clunky one I’ve become dependent on in just over a week. I had a manual wheelchair eval. for a better fitting loaner. Asked several times if I wanted a power chair and declining same, I finally broke down and tried the one they had. To make a long story short they are delivering my custom-fitted model in three days! Watch out world, but first we will probably have to buy a lift.

On the way home we stopped for MacDonald’s, (isn’t American fast food depraved but glorious). I promptly ate too fast and choked. As if to remind me of my fate I glanced at the building next door. It was the mri place I had driven to on my lonesome only several months ago, can no longer drive or even make that walk with just a cane. LIFE IN THE FAST LANE.

When they wanted to schedule next visit for three months I took somebody’s advice on the Forum (joel?) and asked for one in two months. The future will always be scary but it was good to get so much material support.

Love all you pals and gals
 
WOW! They did so much more for you than they did for my husband. We still feel a bit out in the dark with everything. They just told us we needed to go to a pulmonologist and a GI asap. We've been to the pulmonologist, and we're heading to the GI in two weeks. Maybe we will learn more.
 
I think we are lucky we live so close to NYC. We should have gone there over a year ago but we were intimidated by the city

Best of luck with your concerns
 
When was your last visit that your FVC was 90 and now below 60? I am curious my husband had first visit with ALS clinic on April 5 so was his first breathing test. He was already <70%. Nxt visit is in Aug so I am anxious to see if there is a difference. Maybe he's been at <70% for a while.

Glad your getting your pwc rather quickly, took us about 3 months. Just got it nearly 3 weeks ago. Certainly makes things easier and reduces fatigue on Mike's body.
 
I am impressed with your positive attitude! That is the best way to tackle this disease, stay ahead of it and don't be afraid of the assistive technology. I love my power chair, I think everyone would want one if they knew how nice they were. :) Reminds me of the movie Wall-E, in the future everybody gets around in one.

That is worrisome that your breathing is down, but possibly it may be a temporary effect. Allergies are bad this time of year and your cough may be hurting your breathing rather than vice versa.

Not driving has been a hard adjustment for me. Sometimes I feel like I've accepted my fate with ALS, but then I get driven by, ah, certain family members and suddenly my life is flashing before my eyes as we careen down the highway barely in control. I realize then that I still have a strong survival instinct. That is good to find out, I guess.
 
Mine was 38 before I had the tube placement...I was 20 something leaving the hospital to go home with oxygen in hand.. I talked to my dr ,Nero and asked him about it being so low. He just said that he doesn't think I am that low..he didn't seemed worried either..maybe they don't worry intil it is 0? Lin
 
Well he used the word "stout" cos he could not pronounce Voluptuous. tHAT IS CLEARLY WHy all the beautiful young men came around.

FAST lane, downhill...........I remember being so excited about my lovely rollator and I used it v little finally.
Power wchairs brill but you have to be prepared for demolishing your home.
There is always a good side - we found out there was woodworm in the kitchen door frame I took with me when I went through wrong too fast.

Eat slowly in little bites and think about what you are doing, says she who just aspirated a tiny crumb of shortcake (my healthy breakfast) because she drew breath to try to get her two cents into a conversation then coughed so much I missed it all anyway.

Bon courage, my friend..........do you like the Macdo chicken shakes in a bag?
 
With our last visit to the Duke Clinic, all the doctors and therapists we saw told my mom that she need to use the walker/seat on wheels and no longer depend on the cane due to her multiple falls. They also started pushing the pwc, hard. My mom isn't on Medicare yet (my dad explained why but I still don't get it) and won't be until October of this year. Understandably so, my dad doesn't want to fork out the humongous amount of money for a pwc yet, when Medicare will pay for one. My mom has been depressed for weeks now because she has had to give up the cane and use the walker. One more sign for her that she is losing her independence. I really worry about her when it comes to the pwc. Or maybe she'll be like Irismarie and take out the doorway! :) Best of luck with the new chair - enjoy! Also, slow down when you're eating...no more choking, ok? Keep us posted on how you're doing.
Take care and have a blessed day.
 
Bythesea-

I so happy you are continuing at Columbia. The NYC traffic is a bear, but you are realizing that it is worth the trip!
Perhaps you can schedule your appointments for a time when traffic is a little less- maybe getting to the city, but once you are there it is always bad!

We are about 10miles from downtown Philly. We schedule our visits for 10am so we can be just behind morning rush-hour traffic. Most of the time this works- we can arrive in 30mins. (but getting parking is another issue).

I agree with Hal about the breathing issues. There are variables that effect the readings.
And even a slight cold or cough can change those numbers. My husband's once dropped 30 pts.; he did have a slight cough at the time (cold coming on).
She repeated it again in 10 mins. lying down and it was up 10 pts. (It will normally go down in the lying position!) So it was chaulked up to not having a tight lip-seal & possibly a cold. On his next visit, it was back to where it had been.

Remember too, the number will have fluctuations just like your blood pressure and pulse vary according to activity, time of day, etc. Take a watch & see attitude- I think that is what your team is doing. This is probably the reason for the pulse ox Rx.
Pulse oximeter is an intstrument that calculates the oxygen levels in your blood. It is the little "do-hickey" thing like a clothespin that is placed on your finger.

I think you'll be pleased with the rollator. My husband hated the regular walker- rarely used it; I think it didn't move smooth- but uses the rollator and likes it. (as much as you can like it!) You'll be glad about the PWC, as will your wife if she had to push you before! It gives you the independence to feel more in control. You will need to assess your home environment though!

Hal-

Now about the driving thing! Jim's not too happy about it either- not so much that he can't drive; more that I'm driving.:roll: But his complaint is that I go too slow for him!
I tell him if he doesn't like my driving, he should get another driver! :lol:
 
My husband's breathing test was at 125% in February. At clinic in the beginning of May, they showed 41%. We went to a pulmonologist last week, and it was 80%. Clearly, it can be affected by many things. We were told that they can get a reading that is lower, but not higher - so the 125% and 80% reads are the correct ones.
 
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