Would like to introduce myself

silasbaby · 10-29-2009, 09:54 PM

Hello all !

My name is Julie and I reside in Indiana. I had registered on the site some time ago and have not posted but maybe once or twice. But I do try to log on daily and read. I am a caregiver for my husband Mike who was officially dx Nov 2008. Mike started having problems Aug 07 and the doctors here at IU Hosp. stated it was Parkinson's and were treating him for that. How-ever he continued to get worse and the medication was not working. We ended up switching doctors and he was dx with ALS Nov 08. Mike had a law enforcement background and got out after 20yr. For the past 10yrs. he was a investigator for the State of Indiana. I still work full time. His progression has been fairly fast. They pulled him off work onto disability in Nov. He had to have surgery on Easter Sunday for a perforated bowel and has a permanent colostomy. We then had his feeding tube put in the end of Aug 09. It seems that these 2 surgeries have really made the progression much faster. Hospice was brought in yesterday. I do have a great support staff here at home. My sister moved in to help and Mikes mother also moved in with us. I am 47 yrs and Mike turned 55 in Sept.
Sorry if I am rambling, but I felt I needed to really introduce us and let you know who we are.
Julie

shelleynshaggy · 10-29-2009, 09:57 PM

Hello Julie, welcome.

This is a great support group - glad you found it - rambling is welcome here.

joelc · 10-29-2009, 11:05 PM

Welcome to the forum. Sorry about your husband. I hope we can be a support for you! Don't hesitate to ask.

GlenBrittle · 10-29-2009, 11:30 PM

Hello to Julie & Mike .

Welcome to our home on the net. Sorry to hear about Mike. Tell him to keep fighting.

Glen

Al · 10-29-2009, 11:52 PM

Hello Julie. Sorry about Mike. hope we can be of some help.

AL.

Zaphoon · 10-30-2009, 12:31 AM

Hello Julie! Welcome to the forum! I'm sorry to hear your husband has been having such a tough time of things lately. Thanks for being there for him!

Zaphoon

tdamess · 10-30-2009, 12:38 AM

hi, so sorry you are going thru a hard time i feel your pain in your post .. we are all here any time you need to talk , ask , or just vent .. my thoughts are with you

Erica · 10-30-2009, 08:15 PM

Hi Julie, Welcome to the forum. I'm so sorry about your husband.
This forum is great, I found a lot of support and encouragement here.

silasbaby · 10-30-2009, 08:57 PM

Thank you all:

I have been following your posts and also searching for information. Have many of you with the feeding tube had problem with infection? We had no problems with it after surgery but for the past 2 weeks been fightling an infection around the tube. Have been on 2 rounds of antibotics. At the time the purpose of going ahead and getting the feeding tube was due to medications. He could not swallow them anymore and we thought it best to switch to liquid medicines or ones that could be crushed an use the tube. We also wanted to get the tube placed due to lung function test before it dropped any more. He is still able to eat by mouth but only soft foods.
Prior to Mikes dx with ALS I can never known anyone who had it- boy do we lean fast. Every day is something new to deal with.
I believe I have read on here that some of the caregivers are doing it all on their own- no help. I have to commend you for doing that. I initially thought I could still be the primary caregiver and work full time, but it has not worked out that way. My sister Jan is a drug monitor for pharm. co and decided she was tired of traveling and wanted to take time off- she moved in with us in April and takes care of all medical issues, supplies, doctor appts, house and even grocery shopping. I could not do this without her. We also moved Mikes mom in- she is 91. She cant help with lifting but her and Mike can visit and they get to spend time together. With her being 91, she is in better shape than me (47) !
Julie

BethU · 10-31-2009, 03:38 PM

Wow, Julie ... you really have a load on your plate. So sorry about Mike's dual surgeries. That must take a ton of coordination with feedings, etc. Bless your sister and mom for helping out. It is not a one-person job.

Hang in there.

GlenBrittle · 10-31-2009, 03:47 PM

Hi Julie,

Yes , mine has a runny nose . It looks like it just wants to leak. I'm ok with it now. I had one round of antibiotics and it cleared up.

Soap and water at least 3 times a day , and when it gets red , triple action polysporin keeps that down.

Most of the time , its wash and wear.

Basically ,

if you dont have a fever
and the site is not infected red
and its not hot to the touch
and your not in pain
and it doesnt smell (NURSE ADDED THAT ONE) ,

use the polysporin only when needed.

Hope this helps.
Glen

DgtofTNfan · 10-31-2009, 03:56 PM

Welcome to the forum Julie but sorry for the reason you are here. Sounds like you got a house full of great help.
Dana

handinhand · 11-02-2009, 02:19 PM

Hi Julie, Sorry to hear about Mike. I am so glad that you have help. I think my number one worry is for my husband who is my caregiver. This is so hard for him .. I have told him that I would rather be in my place than his.. I mean that too.... This Forum helps me tons.. Glad you found us... Linda