Reaction score

Profile posts Latest activity Postings About

  • @ Peg and Scott, I was at Yorkwood from 78 until 81 and I have a cognitive disorder that impairs my motor skills greatly. This is part of the legacy of why I was at Yorkwood and the fact that I was soundly kicked and beaten in a violent attack recently didn't help matters. I want to know if you all know how to reach other former "Yorkwoodies" and if there is any such group on facebook or should we form one?
    Hey Scott,

    Great to hear from you, but so sorry for the news. If you can get the full bad and new room that would be great news. I sure will pray for you to be able to do that. I keep thinking about those tiny full bath in Akea and the possiblility of putting in a shower on the main floor. We live in a condo so no adding on even if I could.

    I go to U of M on the 1st. I just got the appointment. It is the first time I will see Dr. Little. I hope she is as good as Dr. Gruise. What time is your appointment?

    Is your wife working? You can write off on your taxes any changes you make in the house regarding accessiblility right? Have you gone to the ALS association for tips and maybe cost reduction? Just wondered. I am not very good about that stuff but you probably are. Write when you can. Best Wishes, Peg
    P. S.

    I'm still scheduled to go to U of M on May 2. My symptoms seem to be progressing as my left hand is now curling and my left arm is getting very weak along with my neck muscles also. This disease definitely is not for the meek!

    Anyways, sounds like you had a great Easter! Family is always fun.

    Hi Peg!

    Great to see you finally found me! Let me see if I can answer all your questions. I got my orthotics about 2 1/2 weeks ago, and hated it! It made my foot incredibly uncomfortable and made it very very difficult walk, the exact opposite of what is expected. I went back last Thursday and had it adjusted. They had left a small" heel" on the back of the orthotic that was lifting my right foot up too far. It was causing me to lean to the left and also causing pain in my back because of that. It was also causing a ton of pressure the top my foot and making it numb within 15 to 20 min. of putting on. The orthotist took off the heel, then added half-inch lift to my left foot. This has made all the difference in the world! I had also talked to him about putting a dynamic joint and at the ankle, but the stuff he had done so far work so well I asked him to hold off on ordering that. I'm going for my next appointment with him this Thursday.

    Wow, I never saw some of this conversation at all. How about the orthotic? Did you get it? How is it working. Catch me up please. My neighbors came over tonight so my husband and I could witness their wills. Their daughter became a lawyer last fall and they are going on a cruise tomorrow. It was weird as I had a lot of trouble holding the pen and I was concentrating on writing and signed the date at April 13, 2014. Duh - that's mostly why I could not work as I could not write in the boxes for scoring kids on learning tests and evaluate their behavior at the same time. That's the kind of thing where my disablility shows up.

    Our oldest daughter Jenny, who is 32 was here last week for the Easter break. I lost my food control a bit and all of my workout schedule so I start again Sunday but will have to back up a bit. Ok I am stopping now. Good night. Peg
    Hi Scott,

    Found you. I knew you wrote me but I could not find our conversation. Awwww! frustrating. I have no appointment at U of M yet. So I will call on Monday. I may have gotten lost in the schuffle of reassigning Dr Gruises's patients. Do you talk to Tim the nurse? I had treatment yesterday and a woman I went to high school with was there with a friend who was getting some kind of infusion. Small world I graduated 45 years ago... Most of the people at the center are there for cancer I think.

    I was glad to read you had some clear success with the diet and that you were able to walk up the stairs with little assistance. Are you going to be able to get long term disability until SSD kicks in? Are you all filed for SSD? Take good care, Peg
    On a happy note, I was fitted for my orthotic yesterday. I thought I was getting one for both ankles, but it turns out I getting one only for my right ankle. It was pretty wild! The orthotist said it should be ready a week from Monday! I'm really looking forward to it as Tom said his AFOs made a huge difference in his walking. It's been so hot lately I haven't been wearing the soft lace up brace. Big mistake! I put on today and it made a huge difference and my gait. That was really silly of me.

    It's interesting that you and your husband use muscle milk. I've been eating as much protein and whey protein as possible the last week and a half or so. I'm sure glad Jack at the ALS clinic told me why I was losing so much muscle mass. I just wish somebody had told me this six months ago! I really need to get back some of those 37 pounds of muscle.


    Let's wait until I hear from ALS clinic. They said that was first available date but they always have cancellations. I don't know when they'll be contacting me about this so I'll have to play it by ear.

    Thanks for the complement. I try to remain positive about this disease and also remain positive on my posts. I figure it doesn't do anybody any good to hear a bummer news! I just see so many people on these websites crying out for help. I know you've replied to Miranda (Mir1013). It hurts me to see how much pain she's going through for her father and how much pain she's already suffered in her life.

    Scott see my next post. I talk too much!
    Hi Scott,

    5/2 is a Wed. I babysit my great nephew usually Mon Wed Fri. (1 to 3 days a week). I will reschedule that Wed and get a Tues or Thurs. My niece brings him to me and he has another babysitter at home on Tues and Thurs so we can switch as needed. You are doing a great job moving forward. It is healthy and smart to keep moving forward. I love your attitude and what you write. Tom does have a great attitude also. I saw what you wrote at the MMN site. Take Care, Peg
    Hi Scott,

    I wrote about 3X more than allowed in one response. So I will save the rest for later. Talk to you soon. Peg
    I had to divide up my response as it was too long.

    I talked to my husband about meeting up with you guys but he is not as out going as I am. Let me know when you go to U of M next and I will try to make it and meet you there. I had Dr. Gruise but she is leaving or has already left. She was my neurologist for the last 5 years, but is going to NY. My new neuro is Dr. Little. I have heard good things about her but will not meet her until April when I go for a check up. I go every 6 months. I have treatment tomorrow.
    Hi Scott,

    Glad you wrote me here. You are much freer with information than I am. So I live in Northville Mi. I used to work at Yorkwoods Center. It was the Children's State Hospital associated with Ypsilanti St. Hospital. I worked there as a group leader, case manager and then a teacher. It is gone now but was right off of US 23 and Willis Rd so I know pretty much where you live.

    I am sorry to hear about the falling. I used to fall a lot but not like you describe. My husband and I drink "Muscle Milk." We decided just yesterday that we would have it more often because it is hard to eat enough protein. It is Whey powder. I blend it with about 8 ice cubes a banana or two and skim milk. We both like it a lot but he prefers one kind and I the other. I buy whatever is on sale. You can get it from amazon.com or Costco for the best prices. It is very popular for building muscle.
    Hi Scott, welcome to the forum! I have a TON of respect for Peg and she has done her homework. I'm sorry you have been given the ALS diagnosis. As you probably know it was ruling out of MMN via a trial of IVIg that brought me to my diagnosis. MMN is less prevalent than ALS, especially for leg onset, which is me. If you can provide your contact info (email address) through a moderator I'd be happy to continue the conversation. -Tom
  • Loading…
  • Loading…
  • Loading…