Are You A Weg's Patient With No Family Close By?

[TOBEY32]

Feel like I ask some silly questions at times.
I am not one of these people - got parents and siblings in the same town - but I think of moving elsewhere sometimes. Probably would know no one in the new town and worry if I should get sick (my sis was a big help when 1st diagnosed: visits, taking notes).
Yeah, one eventually makes friends, but still wonder.

If this is your circumstance how has doing this "solo" been for you?

David

[annekat]

I don't think it's a silly question. I have some siblings and friends nearby but live alone and sometimes feel pretty alone with this disease because though people know I have it, they don't really "get it". That is OK for now, as I'm functioning pretty well, and if I became really ill because of Wegs, I'm sure people would jump into action to help. If I was contemplating a move to somewhere where I knew no one, I guess I'd do some research first to see whether there might be some Weggies in the area and what resources were available nearby, such as support groups and appropriate medical care. I, too, would like to hear from those who've been dealing with this on their own without a lot of readily available help and moral support.

Anne

[pberggren1]

No silly questions here David.

I don't think I would move right now myself even if I had lots of money to do so or had unlimited funds. Right now my parents are my rock so to speak. I know I could live without them. God always provides in some way. But it would just be harder. I live in a small town so it is easier to get around and see my doc often. I do have some good friends here but none that I could move in with. It scares me sometimes to think when mom and dad will be gone. But I'm sure I'll manage some how.

[Dryhill]

David, I think you have asked a sensible question and before moving you should give it a great deal of thought. I live by myself but have an excellent support group:-

1. One set of neighbours are always checking if I am ok and doing things to help (Brian cut my lawn a couple of times last year and that was without me asking if he would.

2. My ex lives about three miles away and she comes round about every six weeks or so and does any house work that has got on top of me.

3. My elder daughter lives about 25 miles away but she makes regular contact to see if all is well. Plus, work commitments allowing, she and her boyfriend come and take me out for Sunday lunch three or four times a year.

4. After the last load of snow I went to clear my drive to find another neighbour had already done that for me.

If I were to move I would definately lose the neighbourly support and the family support might also be lost. No any move for someone with our fun disease needs to be very carefully thought about. Also what about your doctors, will you still be able to see them? Here in the UK it is nearly impossible to keep the same GP if you move out of their catchment area (I have just about got my GP trained now, I would not relish re-teaching another doctor).

Jim

[drz]

Feel like I ask some silly questions at times.
I am not one of these people - got parents and siblings in the same town - but I think of moving elsewhere sometimes. Probably would know no one in the new town and worry if I should get sick (my sis was a big help when 1st diagnosed: visits, taking notes).
Yeah, one eventually makes friends, but still wonder.
If this is your circumstance how has doing this "solo" been for you?
David

I think this is a big question for any of us with a chronic health issues and precarious adjustment. I have considered moving to get closer to my GPA treatment specialists as they are currently 3 and 6 hours away by auto or ambulance. My wife and I both have serious health issues so some times we can help each other but often not. Our daughter sometimes flies in from 1200 miles to help us at times, especially in emergencies, and also does lot of phone consultations to help manage many things. Friends can and do help at times with transportation to some appointments when we are unable to drive and we hire extra help with housework and have nursing and home health care options set up to use as needed. I am in an assisted living complex which has emergency nursing services available through a panic call button and my wife also has a home alert service set up for her house. Yet these things don't make up for the little things like who gets to mail for you and runs errands that don't warrant the shopping services that family members usually provide. Yet I see many elderly people with frail health getting by with no family members close by to help them but it is much harder I think than for those with family or children close by and frequent contact. I know some people manage well with a live in helper that also has some back up care and this can be a good option and often cheaper than full time care in a nursing home or enhanced assisted living arrangement. A good live in helper though can often be hard to find.

I get by now with much of my lab work done locally (three blocks away), some specialists an hour away and monthly commutes to one of the GPA and some other specialists which is either a very long day or over night stay or a three day trip for six hour trip since I need time to rest up before making a six hour drive. In winter when snow and wind make travel dangerous, like today, knowing you need to make such a trip in three days causes anxiety and uncertainty about whether you can keep the appointment.

One of the big questions for me, and I think most people, is how much social support you have in current place and how much anxiety you will have about such a big change as moving to new place, especially if you know no one. Change is stressful and stress is not good for managing GPA and most other health issues.

[Al]

David, this is a very serious question, and I am glad you have received some serious responses.

I understand the feeling of needing a new start. On the other hand, this disease is expensive,time-consuming, annoying, and--often--disabling. My own feeling is that. without my family, I would be in a world of hurt. To be sure, families can be defined in many different ways. Yet, it is really hard to imagine facing anything this serious totally alone. I hope you feel that this forum is your extended family, at least in part. Yet, we can't always be on the scene to argue with your doctor--or rent a move or make popcorn. Please let us know how you and your mind come to terms with it all.

Al

[TOBEY32]

Wouldn't move somewhere where there weren't good docs. Not crazy about my care here, so that wouldn't factor. Considering OKC. Something new, yet only 100 miles away. We'll see how it comes together...

[annekat]

Sometimes a move can be a rejuvenating experience. A big city like OKC would be a good bet for decent medical care and finding new friends and a support network.

Anne

[Texastatoogal]

Did you end up moving? I live in Tulsa.

[carriej22]

Everytime I see a thread bumped up that Al posted in I get sad :sad:

[annekat]

Everytime I see a thread bumped up that Al posted in I get sad :sad: Me, too, Carrie. He was taken from us way too soon.