Another calling all PALS thread! ( PALS only post please)

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Nikki J

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The other one closed and it is time to chat again!

Can't believe it is almost Christmas with 2017 close behind!

This is a challenging holiday season for us as it is the first without my sister but I am looking forward to the New Year.

We have a new nephew/niece coming from an inlaw which is very exciting!

Chime in everybody please!

( PALS=anyone with MND in this context)
 
I really enjoy hearing from other PALS. We lost some dear ones this year and I lost 3 out of 10 from my local support group. One we had become quite close with. His wife has visited me three times since Mike has passed (October.)

My life has changed so very much during the past three months. Falling, buying a larger condo, saying goodbye to my beautiful condo on the Lake that I thought would be my forever home, moving in with a roommate, and that's just the beginning of change. Remodeling the new-to-me condo and learning I am no longer independent both scare me.

I had friends visit last night. They laughed and played games and brought food.

I hired a helper two days a week. She will cook, do my laundry, light cleaning, and learn how to operate any of my medical equipment. I plan on showing her my medicine. I had a friend put a lock on a huge dresser with the bulk of my medicine in it and the rest is stored in another location so access to my everyday meds and supplements prevents anyone from stealing them because they're counted out. The lady started Tuesday and is well known by two of my friends. She has some caregiving experience with end-stage diseases as well as a degree in business administration. I plan on having her reorganize my files because bending over aggravates my back. She doesn't need the money but wants to be busy. $12 an hour.
 
Hello pals!

Holidays can be tough, no cooking, no decorating, no shopping...well, no shopping is actually ok by me.

Trying to focus on enjoying those around me and eating up all the cookies they bring.

Nikki, I'm sure it's hard to be missing your sister during these days. Sending you hugs from me and Marcia.

Kim, glad you are able to hire some help, that will make life much better for you.
 
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Holidays are very lonely for me, except the time I get to spend with my grand kids.

I can't believe how fast the days go by, I don't usually get outa bed before 10am, don't fall asleep till midnightish or later. Harlee is pretty much my full time companion, she never leaves my side.......even when I take a dump! She has way more energy than me and I feel very inadequate as her human.

I had surgery recently and ended up in the hospital for 4 days for an outpatient procedure. Anesthesia always kicks my ass. I am on IV antibiotics now and I feel like my progression is full on lately.

Haven't been able to work out for about a month and last time I did it wrecked me. I guess the resident experts are right about exercise.

I don't know where I going but I sure know where I've been.

Whining spree over.........................
 

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Recently learned our eighth grandkids is a cookin'
 
Wonderful news, Greg! Congrats!

Mark, I am sorry about the exercise reduction for you. You may feel inadequate as Harlee's person, but she thinks you're the best thing that's ever happened in her life (except for maybe food).

Kim, glad you've found help in your day to day. Your pain adds another element to an already crappy situation. Hopefully you find some answers with a visit to someone other than an ALS specialist.

Nikki, congrats on the upcoming new family addition!

azgirl, I hear you about the shopping. While the reason for not having to shop is a bit grim, take relief where you can find it!

It's odd how the big holidays seem to highlight a sense of loss. This time last year I was tired, but able to fully participate in all traditional activities. This year I feel like I'm just observing as others take over for me. While it's really helpful when others step in, I can't help but view it as a loss- even if Christmas was always frantic and busy. What makes it even more poignant is this is likely the last one my son will be at home for. He'll be doing his own thing next year, or at least living somewhere else and just visiting home.

I'm participating in two separate research studies. Both involve MRI imaging. One is a pilot study that is looking at cervical imaging and possible PLS specific changes. I sincerely hope they manage to find some sort of biomarker. The other study is for all types of MND and involves MRI imaging and a neuro-cognitive component. While neither have anything to do with treatment, I'm happy to take part in something that helps neurologists find something helpful for diagnosing MND more quickly.
 
Hi all
Fully moved downstairs into the dining room aka my new bedroom, have settled in quite nicely now despite having had a sulk about the necessity of it. Tinkerbell the cat used to sleep on the end of my bed and I was upset that I would miss her, but she has decided that she is moving with me which is nice. She is a bit scared of the bed motor though so I have to get the profiling adjustments sorted before she jumps up.

Christmas was difficult for me last year emotionally, so all pressie shopping has been done on line way in advance and my daughter is playing Christmas elf and doing all the wrapping for me. She has also decided that I am to have a Christmas tree in the conservatory so I can see it from my bed.

My granddaughter is coming to stay with us for two weeks over the holidays which will be lovely, can't be weepy when you get constant Nana hugs from a four year old. Kids have the most amazing attitude to disability. She sits in front of me on my bed or my riser chair snuggles her back up against my tummy and pulls my arms round her as if I am her own personal sofa cushion. She likes to share my breakfast that way and watch the tv with me. I can't wait to see what she makes of the hospital bed. She loved playing with the remote on the riser chair.

Wishing family hugs and that the holidays are the best they can possibly be for all of you.

Wendy x
 
Great to hear from you all. Hope the rest will chime in.
Kim glad you found a helper

Kay thanks for checking in and the hugs

Mark I am sorry to hear you have been having a tough month.

Greg congratulations

Fiona thanks for doing the biomarker studies. They are SO important

Wendy I am glad Tinkerbell decided to move with you. Enjoy your visit with your grandchild 4 is such an awesome age!
 
Thanks to Nikki for gathering us together again. Sometimes it's. Hard to keep track of who is here with the unfortunate fluid movement of our group, too many new people, too many leaving too soon.

So much to respond to above but my pecker is not working well this morning. That is what I call a stylus that is attached to my hat

Mark, love harlee, I think you are one of those people who start looking like their pets! Here's my pup, Charlee. She must sit under commode to guard me. Drives caregiver crazy!
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I would have to say for me it's been a long strange trip so far.
Lots of adjusting and readjusting! Grateful I don't have to do this on my own. Grateful for those before me that have shone the path with courage, strength, integrity , both pals & cals!
Grateful for family & friends that help me & my cals.
Grateful I was a vet, and that the va has helped me.
This is such a beat down physically that when the time is here to move on it's actually a relief. I have been wrapping my brain around this these last couple months and feel more and more that each day must be lived in the moment.
You all give me a smile on my face. Love ya all. Chally
 

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> Grateful I was a vet, and that the va has helped me.

For those who look at this statement and feel envious or cheated, please remember that the government is pretty sure that our service was what gave us ALS.
 
They claim agent orange, Vietnam 69
 
Chally, When I got to your post, I cried my eyes out. Thank you SO MUCH for your service. You have lived life to its fullest and are an example for all of us. Thanks for the good advice....living in the moment. I think that's what we are supposed to do. God bless you, Chally.
 
Took this one shortly before my diagnosis. This is Ace.
 

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I have to wonder if my time is about up. I was diagnosed in June of 2014 and it's been a steady progression ever since. These days the only time I'm out of bed is for an occasional shower.
sounds kind of dismal but I'm actually very happy and upbeat the majority of the time. Except when I have an itch. I can't reach anything, which is really frustrating because in my mind I can see my arm and hand reaching out and scratching while in my reality my arm doesn't move at all.
I am also grateful for the VA, but in my case the disease is blamed on something I " picked up" during the first Gulf War.
anyway, I have hope but realistically I know that no cures are coming soon enough to help me. And I'm OK with that. I have so many things to be thankful for, especially my daughter, who is my caregiver. And I have all of you.
ok enough rambling.
love you all
mark
 
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