PALS roll call Wednesdays (or whenever) PALS ONLY PLEASE

[KimT]

Re: PALS roll call Wednesdays ( or whenever)

I'm here....holding steady, no new signs of progression. Feeling thankful that I am where I am, but frustrated that social security says I need to be more disabled to qualify. REally? my dad used his hands and walked for the four months he lived with als, then he died. It's like they want to drag things out so you die and they don't have to pay into your disability.....

ALS qualifies you for automatic SSDI as long as you stop working and as long as you've worked enough quarters to qualify for SSDI. They don't measure your degree of disability. All it takes is a letter from your doctor stating that you've been dx with ALS.

 

[jeanniet]

Well, I'm here! My latest doc says I have focal motor neuron disease! May or may not progress. It's been almost 3 years and it's mostly confined to my left arm which is severely weak....yet that hand is totally fine. Some tremor and very slight weakness to right arm. Everything else is good. So, I'm thankful.
Anyone else out there like me?????

 

[WendyWooG]

Hi all
Big day today meeting to arrange carers to come in to help, my poor hubby and daughter have been trying to manage and hold down full time jobs. Since the hoist had to be brought in it's getting too much and they are both getting very tired. Crossing my fingers that we can have at least some assistance each day to make it easier for them.

Hope you all have as good a week as possible.

Wendy xx

 

[ShiftKicker]

Checking in. It's snowing here- the most in 70 years. While I love it, it does draw to the fore the fact I am totally unstable and unable to navigate icy or snowy sidewalks.

I am participating in a multi-centre study focusing on possible biomarkers that requires an mri and neurocognitive testing every 3 months. Tomorrow is my first session for this study. I am excited and hope they can find something to make it easier to diagnose MND in the near future. I participated in an mri pilot study for another PLS specific biomarker a month ago. I feel thankful I am close to a major research centre and am able to do things like this for future benefit of people with MND.

Fiona

 

[BK2011]

Checking in for Hump Day. So far so good.

Ya'll have a good week.

Bill

 

[Firefighter58]

Hi folks, I am doing well hope everyone else is. Just a reminder for all Canadian members, tax time is coming so don't forget there is a major tax advantage to be had if you apply for the medical benefit.
It has been wet this week, they were calling for a major freezing rain storm but that didn't materialize just as well but it gave all the kids two days off school due to no school buses. I have a couple of minor jobs today and they will probably take me all day but that is OK I am in no hurry, as long as I can still do them that is the main thing. Repair a leaking toilet and make a connection cord for the generator that will keep me busy all day something that used to take me fifteen minutes, but so be it. Hope everyone has a good day.
Al

 

[Nikki J]

Happy Wednesday all! Expecting 8-12 inches of snow tomorrow. NOT looking forward to it!!

 

[Statius@]

Still here and hanging in. We got an inch or two of snow last night, our first since December. I'm supposed to meet an old friend for lunch--more concerned about sidewalks than the roads.

 

[BobbyRayC]

Still hanging in there. First ALS support group meeting yesterday. Went good.

 

[KimT]

Here. I have a support meeting this afternoon. Sad because we lost 4 PALS this year and our group is small. We go out for an early dinner afterward. Hoping my back holds out. I'm going to order a ROHO cushion today.

 

[notBrad]

Hi all, doing well as can be expected but no complaints. Moved out of the motor home and renting a house. Hope all y'all have a good week!

 

[KW1234]

Checking in from Oregon. My order for the Tobi Dynovox should go in this week. My speech is gone. People do not understand me any more. Meeting with numotion at end of month to order wheelchair. Good clinic day last week.

 

[DaChief]

Happy Wednesday. Hanging in there. Hope everyone has a good week.

 

[swalker]

Checking in from Vail, and this time on a Wednesday.

We had a terrific storm over the last 24 hours. Winds on the mountain were reported at up to 80 miles per hour. I would guess that down in the valley where we live the winds topped out at about 60. We only had about 5 to 8 inches of snow.

I continue to do well. Looking forward to the return of sunshine so I can tour the neighborhood in the 4x4 wheelchair.

Steve

 

[AnnMarie]

Checking in, day late. Blizzard conditions today.
Hanging in there, hope everyone is doing well