New and looking for connections

[Margesmn]

Hello all,
My name is Margaret and I was diagnosed in November 2015-onset in right foot. After reading some posts, I feel blessed I received my diagnosis so quickly. (First Dr. Visit was July 2015.)

I have read a number of posts and appreciate all of the information, suggestions and support I found. I am looking to connect with others who understand this journey.
I have a wonderfully supportive husband and family and great friends who have rallied around me. I feel so blessed to have so many who care. I feel it would be helpful to talk with others who are struggling with the same issues.

As for where I'm at physically, I am still able to use a wheeled walker to get around the house. I use a wheelchair when I go out anywhere. I feel my walker days are numbered as my right leg is becoming very weak. I can currently shower alone using a shower chair. Again, I feel those days are coming to an end. My right hand is becoming get shakey when I eat which is starting to be make eating more challenging.

Mentally, I feel I'm doing pretty well. I have my days but I have accepted where I'm at and try very hard to live one day at a time. I just finished reading Tuesday's With Morrie, which was great. He was a wonderful example and one I'd like to follow. I've moved on to the book he wrote himself, Morrie Schwartz, In His Own Words. It contains awesome aphorisms which, I think apply well to living with a terminal illness.

Thanks for reading my ramblings.
Happy Easter!

Blessings for all of you,
Margaret

 

[Green Queen]

Welcome, Margaret.
It's not good that you find yourself belonging to a group such as this. Here, though, you will find lots of comfort, support and ideas/suggestions for your journey.

 

[KimT]

Welcome, Margaret and God bless you.

 

[Nikki J]

Sorry to welcome you Margaret. Please stay safe. I know it is hard when you are in transition from independence but as I am sure you know a fall can catapult you into a much more dependent status

Looking forward to getting to know you

 

[affected]

Sorry to welcome you here Margaret. As Nikki says - stay safe, don't fall, it can be disastrous and serious injuries will be life changing as they often will never heal properly. You will find lots of support here.

 

[lgelb]

Welcome, Margaret. Please chime in any time.

Best,
Laurie

 

[silas19]

Welcome to the forum, Margaret. I just joined myself. Like you, I am still capable of doing many things on my own, but I am afraid those days may be coming to an end. You are right--it is difficult living one day at a time. I am so glad you have such loving and supportive people around you--that makes all the difference in the world.

All the best--

Silas

 

[CarolSue]

I'm new here as well. I was diagnosed Jan. 2016. I too can still walk...but it's so much easier and safer with my walker. Mine also started in my right foot but it has begun in the left as well. I also have weakness in my right hand. Going to the mall I need a wheelchair. Eating is okay so far, however ocassionally I think if I'm not paying attention I could choke on my saliva. I'm having a hard time dealing with it all and get very frustrated with Doctors. Seems to take forever to get to the "next appointment". I will have my first "ALS clinic" appointment at KU med center the latter part of May. I do have a script for daily 25 mg injectable Methylcobalamin (B12) that I will get filled next week. I have to drive 3 hours to get it as it has to be filled by a sterile, compounding pharmacy. It is supposed to possibly slow the progression of the disease if started soon enough. Please stay in touch as we are about in the same stage of the disease and it would be great to talk to someone else that is going through the same thing I am. Much love and prayers to you and yours... Sorry to find you here, but there truly is a wealth of info being shared on here. If you wish to talk via email, I'm open to that, just let me know. CarolSue

 

[frankb]

Welcome to the forum, Marge. You will find some of the most caring and informative people that you will ever meet. No question is too large or too small. Please use the Forum regarding any matter you choose. Sorry this unbelievable illness brings you here, but a hearty welcome.

 

[LifeEnthusiast]

Sorry to welcome you Margaret, but welcome. As others have said, this is a great group of people and not question is too big or too small. It's all about support here. That's the emphasis -- with a little laugh or two along the way.

 

[scaredwifetx]

Welcome Margaret. You will find this forum to be a great source of knowledge and support.

 

[Pecksco]

I get the B12 shipped in an Ice Packed box from a pharmacy. At first I was told there was only one Pharmacy that had the B12 and I later found out there are several. There are several prices too.

 

[hjlindley]

Welcome The best advice I can give you is stay ahead of the disease . File a immediately for disability. Evaluate the house you're in for wheelchair usage. I sat down before I had to because my balance was so bad. After eight years, I was still talking, eating and breathing without assistance. The best decision I made was to have a shower converted so that it could be entered in the shower wheelchair. Feel free to ask any question. We all progressed differently and we are here to help.
Hollister

 

[Buckhorn]

Welcome Margaret. I'm sorry you have to join this little club, but you will find many people here willing to share advice, commiserate, etc. Just ask away ....... Blessings to you as well!

 

[CarolSue]

Pecksco,

Where do you get your B12, the dosage and how much does it cost you per month? It is the Methylcobalamin injectable? Thank you, CarolSue