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paula B

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dont leave us hanging

Joel did u move? Did u get trach? Hows it going?

paulab
 

ChitownGal29

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Advice

Greetings from Chicago........I say move closer to a city where you have the "best" medical team and the "best" technological medical equipment. As your disease progresses, it may be a blessing for you to be closer to your children. What a wonderful blessing -- your son is married to a R.N. She knows a lot about the medical profession as well as many illnesses (or diseases). It is smart to be living with people who love, support, and encourage you! Please let us know how you are doing, and how your recovery is coming along (after your surgery). Sell your home in the country, and say good-bye to your rural roots. Remember, you are not leaving your "old" life behind, but rather, starting a whole new life. It is the beginning for an exciting time in your life. Change can be very good and positive. A new living environment will refresh and revive your Spirit!
 

joelc

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Hello everyone!

Thanks for your interest in what we are doing! The first house we went to see did not work out so we continued searching until we found another. We have not seen this one because we had to come home before discovering it. Our kids looked at it and sent us pictures. We have bought it and take possession Aug 10th. I guess we will see it in a few weeks for the first time. It has 2 houses on 4 acres. The houses are private from each other and about 30 paces apart.
The kids have sold their house - it was listed 3 days. We have had a few people through ours but are waiting for an offer. We pray it comes soon so we can make plans.

I was blessed with a plateau on my breathing - seems like the moment I started to use the bipap it gave enough rest to my diaphragm it held better throughout the day. I have met with the respiratory surgeon who will do the trache when it needs to happen but no date has been set yet. Thankfully I have been granted some time to get used to the whole thing. I am scheduled to get a PEG on July 17th.

We are starting to get excited about moving and being closer to 3 of our kids. Never wanted to live close to a large centre so never considered moving near one. Thankfully the place we purchased is private and heavily treed, does not feel like we are close to a big city.

Thanks you for your encouragement! That's what I love about this forum!
Blessings on all!
 

CindyM

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I agree-There are great folks here and everyone tries to look out for one another. Good luck with you move! Cindy
 

Beebe

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Hi Joel

Hello, So glad to hear you found something or "The Kids" did. What would we do without them? Sounds like a perfect set up. Keep us updated. My Best to you, Beebe
 

hboyajian

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Wonderful! I hope you are able to move to your new home soon.
 

joelc

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Further update,

We take possession of our new house Aug 10th. Our son and daughter-in-law sold their house after being listed only 3 days. They will be moving in on Aug 10th.
We sold ours and have to be out Sept 15th, but will move when convenient and likely before that time. Things are coming together!

We really struggled with the thought of moving and leaving friends behind. I did not think it was wise to try to start over again, in a new community, with ALS in my life. But, our friends seem to have dried up and disappeared anyway so my concerns were unfounded. At a time when it would be nice to have friends it seems like we are all alone - it is amazing how people run away from dealing with someone who has ALS.

So, we will not be any worse off (friends wise) in another area. At least we have our kids and grandkids to keep us busy. It might be easier to make friends with them starting off knowing I have ALS - at least this way if they do become friends they should remain.

How have others dealt with this?
 

liz

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Wow, Joel! It's great how fast your housing situation worked out.

Re: those social setbacks.... we've actually been very cautious about who we tell of my diagnosis. While I "outed myself" at work very early (as in the same day of my diagnosis), we have not said much to neighbors or parents of our kids' friends. With them. If people ask, we stick with a generic sort of explanation about me having neurological problems. It's bad enough people pull away the way that you describe, but we don't want our kids to get caught up in that dynamic so we don't share that information with other folks.

One woman whose kids go the same schools as mine has severe problems with spasticity and slurred speech. She has told me that other kids parents tend to not let their kids come over to play with her kids and that teachers don't always take her seriously as a parent. I really worry that my kids will experience the same isolation that this lady's kids have because of our medical conditions. Our thinking is the longer we put this off the older our kids will be and hopefully the better able to cope with the situation when it becomes unavoidable.

In situations where it's just me that will be affected, I have no problem telling people what's happening to me. But in situations where our kids will be affected, we've been very protective. It's really too bad we have to worry about things like this.

Liz
 

Al

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Hi Joel. We moved to a new community 2 years ago and in with the daughter and son in law too. The neighbours were told first off that I had ALS and that was why I was walking like a penguin and not able to do staris etc and why the renovations were being done. The new neighbours are some of the best people we have lived near in our 37 years of marriage. They are helpful, supportive and I don't think you'll have a problem at all.
AL.
 

joelc

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Here I am again, we have the movers starting to pack tomorrow. It has been a long stressful battle to get this far. There are some things the movers will not take so we have made several trips, in the last 2 months, down to our new place. Also had a PEG installed.....it has been too busy! My breathing is getting progressively worse too which adds to the frustration.

It has been hard saying goodbye to friends and family. My mom is 90 and has been living with us for the last 7 years, now she is with my brother. Once we leave we may never see her again.

So, this Friday we are finally moving......next post might be from Abbotsford BC.

Love you all!
 

CindyM

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Hi Joel- kind of a bittersweet moment, isn't it? On the one hand something new and exiciting is going on but it must be hard to leave your Mom and family and friends. I hate how this disease makes everybody adjust all the time! Good luck with the move. We are here for you! Cindy
 

liz

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I find this whole sense that I'm doing certain things and seeing certain people for the last time is a bit disorienting.

Joel - Good luck with your move. I hope you settle in quickly and try to keep rested. - Liz
 

joelc

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Here I am again. I have not had much time lately to frequent this forum like I want. We got moved 1 month ago but our place was destroyed by the previous owner before we took possession. After much consideration we decided not to seek legal help. They charge soooo much we decided we could rebuild for what they charge.

So........the house is gutted, we (our kids) are slowly putting it back together but it is taking a long time, it will still be a few months before we get moved in. All our belongings are in storage and we wait. It is not all bad....we get to put it back together to suit us now which is nice. We don't have to compromise now. We are also going to add a handicapped bedroom and bathroom. It will be great when done.

Thank you all for careing! I look forward to being done and settled.....then I can spend more time here keeping up with things!

Blessings to all!
 

liz

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Sorry to hear about the added hurdles, Joel. At least you're able to look on the bright side. :)
 

CindyM

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Seems terribly unfair, Joel. On top of the big move and having to turn your life upside down, too. What is wrong with some people that they could cause so much trouble? :evil:

Good thing you see the roses for the thorns! My best to you as you continue the repairs and remodeling.
 
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