My journey, more questions. :)

[Firefly]

Hi everyone and Happy Memorial Day.

As time goes on, it seems more questions come up.
My neurologist retired so I'm in between providers.

So, far, what has changed the most is my right hand/arm. It's getting harder
to turn the ignition key, can't hold the coffee pot really anything that requires my thumb and index finger and strength.

I know showering should be the least of my worries, but I think about it all the time. I love showers and I absolutely dread the day if and when it comes where I need assistance.

1. Is it possible to shower without use of hands/arm? I'm pretty limber
but don't see me washing my hair with my legs anytime soon! Are there
any kind of gadgets that can assist when
you lose your hands/arms function?

2. I asked my Pulomologist give me another PFT spirometer, even though I just had one
Ref Pre Meas Pre%Ref
FVC Liters 3.40 3.57 105
FEV1 Liters 2.71 2.99 111
FEV1/FVC % 79 84
FEF25-75% 2.68 3.19
FIVC 3.40 3.39 100

I asked if we could do a C02 blood test, he said he really didn't want to poke me in the artery as he was 100% certain my tests results were good.

2a. Should I have insisted on a c02 blood test. Also he said a Bipap at this point would be useless.

My swallowing has been weakening some. I did have a barium swallow test last month, I was told there was some weakening but not ready for a feeding tube.
Tell that to the priest, when I started choking on an Altoid right when he started to give his homily. I ran out of the church almost knocking some poor unsuspecting guy into the holy water!

3. I'm hungry ALL the time my concern is if we're supposed to eat lots of calories, how do we do it while still getting good nutrition? (I've maintained my weight for a year, so that's good). I drink a couple Ensure plus's a day.

4. Saliva! Omg, that is the worst! I have a mucous plug almost every morning. It feels like I'm choking. I try not to panic but it scares me. Would a cough assist machine help with this? I have a suction machine,and have tried every home remedy imaginable. Currently, I'm trying the Scolopmine patch. I just hate adding more to the medication mix.

5. Smells overwhelm me now. I asked about this but the doctor said he hadn't heard it before.
Has anyone else experienced this or have you heard of it occurring in people with ALS?

6. I think I FINALLY got my primary doc to write a script for the B12 daily Methyl injections, my concern is the recommended dosage is 25 but the compounding pharmacy I'll use only does it in 20. Should I still take it? Or find a different
compounding pharmacy that can fill 25?

7. Anxiety and depression. I know now would be the time to travel, but I am afraid. Yet, I don't want to spend my days worrying, crying and sleeping like I'm doing now. My doctor said I should travel. My biggest fear is choking and having this saliva issue. The irony, is when I'm not thinking about it, I usually swallow ok, not like I used to but not too bad, but once I think about it my throat closes up. Would you recommend travel? I feel like I'm becoming agoraphobic as the only place I feel "safe" is home.

I hate watching a piece of me decline bit by bit. I know it's still new for me, but I don't know if I will ever come to terms with this. They better get that GM604 out for us! and STAT!

Thank you all in advance for any words of wisdom, experience, or
suggestions. I don't know what I would do without this forum.

You're all so amazing, I pray every night there will be a cure for all of us.

Thank you,
Debbie

 

[sleepy]

"I hate watching a piece of me decline bit by bit."

I hear you.

I used to love showers. Now the process is difficult and exhausting - nothing enjoyable about it
But my hairdresser has offered to wash my hair for me every week which is an overwhelming kindness.

I have heard of coffee pots that rock forward to pour rather than lift. You can also get gadgets to help with keys, though I don't know about car keys as I no longer drive

 

[KimT]

I can address the nutrition part. I recommend a Vitamix. Ensure provides calories and vitamins but what it lacks is real food. You can use nut butters, avocados, coconut oils along with either pure whey or egg protein and frozen berries to make a shake that will provide you with more than 750 calories and taste delicious. You have to experiment. You can make it the thickness of your choice.

Because you are getting mucus plugs, I don't recommend using a lot of dairy. Dairy doesn't make mucus but it thickens it. Whey protein may or may not do this....you'll just have to experiment. If you can afford it buy organic. It tastes better and doesn't have a bunch of garbage in it. Thin smoothies with raw organic coconut water. It's a powerhouse of potassium.

 

[pittsburghgal]

Hi Firefly. Regarding #5-smells overwhelm you- my husband has the same thing. There are some things I use to cook that he used to love that I had to stop making because he found the smell to be overpowering and would make him feel nauseated.

He often complains that he smells a foul odor from his trach which he describes "like a dead mouse" but I (and his doctor) can't smell anything.

Sharon

 

[ShiftKicker]

I can personally answer to #5- Any strong smell sets off jaw spasticity and clonus, and makes me salivate like all get out. If it's not related to my MND, I'd be amazed.

Re#7- Please talk to your doctor. Sadness and depression is expected when you've been given a life limiting diagnosis. You have an absolute right to be heard and expect alleviation from your symptoms. There is also a bonus with some antidepressants in that they can reduce saliva- Amitriptyline is one of them. Helps with sleep too!

Best wishes

Fiona

 

[KimT]

Remeron might be considered. It is used off label in nursing homes to help sleep and increase appetite. I went on it before ALS and went from 104 to nearly 140 (the last 15 pounds since my diagnosis.) It will dry your mouth but not to the extent some other antidepressants. It is also one of the best antidepressants on the market for anxiety and moderate to severe depression. It works much more quickly than the SSRIs. The only drawback is it can cause constipation. That can usually be offset by magnesium.

 

[gooseberry]

Papaya and pineapple help with mucus. I often included them in dairy based smoothies

 

[nebrhahe53]

1. Showering used to be one of my favorite things. Now I can't stand it. My wife has to clean me as a can't use my hands and my neck muscles are dead si I look at the floor
2. I used to worry about CO2, now I don't. My breathing is going and that's it, CO2 narcosis is actually a fairly pleasant way to go
3.try need extra off label for swallowing. It allowed me to eat for an extra 6 months. ALS people require more calories than normal, probably because of all those muscle twitches. If you plan to get a stomach tube get it early. You will find as you deteriorate that everything becomes very hard. I got the stomach tube 6 months before I actually started using it. Those here who waited till it was necessary usually has poorer outcomes.
4.saliva and mucous are a constant problem. Yesterday I was choking all day and at night I drool. Medicine that reduces drooling increases mucous plugs. Don't eat dairy-increases mucous. Cough assists help, until you can't hold the mask anymore.thres really no good answer for this. You will choke, and that is terrifying.
5 and 6, no answer as I have not experienced this
7. I take revering. The best thing is it makes you sleepy, so I take max dose, I think 45 mg at night.
I also take Norco for pain and klonopin and Xanax for anxiety. They do help, especially the Xanax. I think I've gotten used to the klonopin. Xanax also makes you sleepy, and you tend to lose your balance more, not that that matters anymore as I have none to lose.

 

[nebrhahe53]

Need extra is spell checker for Nuedexta

 

[Firefly]

I like that.

 

[nebrhahe53]

Oh and you will never get used to pieces of you declining. That's almost the worst part of this disease, it's like losing a child every time a piece of you hoes, it never gets easier

 

[nebrhahe53]

Goes not hoes

 

[chally]

Firefly, I can relate to most of your post. Had to just give it up and let others help shower me and now feed me . Yes we lose a little bit each day and it' s so hard to have to accept the new reality daily. So tiring! Frustrating & weakening. I try to stay possitive but melt down at least once a day espically when there is a falling off the plateau going on. Thanks for your post now I must try to do some little thing for some one else to get out of myself. Love ya chally