Calling All PALS - Take 3 ( Chat thread for PALS only)

[KimT]

I guess our rolling thread closed.

Sometimes I come on the site and feel very depressed to see so few PALS posting. I guess they are either unable or (better) out living their lives.

My life has changed so much since I fell in September but I finally got my van and will have it converted in the near future.

Lots of my friends have drifted away. I really need to meet people in my new building.

I plan on going to the dog park this weekend as the temperature will be in the 70s again. We'll see.

Remodeling has not yet begun. My contractor has been having trouble getting an estimate on the track system and also Lowe's is dragging their feet on confirming the bathroom cabinets and quartz. I'm not looking forward to all the dust but want it over.

 

[Nikki J]

Hi Kim. Thanks for starting this thread. Hope PALS will join in and chat about their lives

Hope your van opens new vistas. The dog park sounds like a good place to meet nice people

Good luck with the remodel.

So far our winter has not been bad ( knock on wood). One big storm and a few trivial ones. I check the 10 day frequently as I fear a repeat of 2015 which had a mild start and then 6 weeks of non stop snow. By this time of the year it had already started but Massachusetts is perfectly capable of snow in April and once, when I was still in school, May!

Back last summer I posted about Marie Kondo and her declutter method. I could not do much at a time but used her as an inspiration and chipped away slowly. Things are much better organized and that has made my life easier. I need to revisit everything and declutter more but am still pleased with what I have accomplished so far.

 

[chally]

Yes it's not always easy to reply post for many reasons but you can see many folks visit the sites.
As I near two yrs on this great forum I look back and realize how very important you all have been in my life.
Yes it's dishearting at times when each of us shares the hurdles this nightmare has throw at us but also encouraging when we meet that hurdle and go through it.
For me I try to do what I can in living as big as I can for as long as I can.
As we all know this nightmare strips us daily, but that's no reason to give in. Many post here on ways to keep the spirit strong in sharing their experiences we can all feel the strength. A few words can make all the diifference.
I am starting the ball rolling to get a feed tube and so that is another corner I am about to turn.
I am in a play this wk- end as a voice of an ogre. My own voice is weak but we are using sound distortions so it really doesn't matter.
I am blessed with many friends that help me in all ways to continues to be a part of my community . My next big adventure will be the tube, so wish me luck. Love ya all chally

 

[Nikki J]

Good luck with the tube Chally. My sister, who delayed getting it far too long, was really happy with it once she got it. It improved her quality of life a lot.

I would say break a leg this weekend but........

 

[Firefighter58]

How you doing Chally, I got the tube a year ago when I could not chew or swallow. Now a year later I can chew and swallow, still eat very slow but do not have to use my finger to move my food around in my mouth any more ( a little embarrassing in a restaurant or in company ). I don't know what caused this improvement, it come on very slowly and nothing else has improved, but I am very happy with it, Really hope you have the same luck Chally.
Al

 

[faithandlove]

Hi Everyone! I'm having a hard time typing this, but I feel lucky that I still can. Everything I do requires so much time and energy. I just started having a caregiver come 5 hrs., M-F and she is so helpful. She made me tacos for lunch and they were the best tacos I ever ate, My husband will have hip replacement surgery 2/27, and he will be in the hospital M-Thursday. We will have to work out a plan for care. I'm just glad he is finally getting this done, but I'm sad that I can't be there nor can I help him when he comes home. It will all work out.

Hugs,
Deb

 

[DaChief]

Just returned from a 17 day cruise. It was fun but was ready to return home and get started on getting our house on the market so we can move back to FL. I just have to pace myself as I wear out pretty easy. Have had plenty of friends offer help and though it is out of character for me, i guess I should really consider it or I may be here forever

Bruce

 

[azgirl]

Thanks Kim for starting this again.
Ćhálly you and I are struggling with the same feeding tube decision. I've made and canceled the appointment with the surgeon twice already. No I need to get on that.

New baby born this week, her name is Reagan Kay, and I was very touched and honored to be part of her name. Very blessed to be here too wellcome her

Why him yesterday for the first time in three weeks, I got it feels good!

It is getting harder and harder to respond, my voice to text is getting tougher.

Love to ałl

 

[KimT]

Congratulations on baby Kay.

 

[chally]

Yeah grandkids Kay, yes we are Kay right in the same boat! Love ya chally

 

[Kathy K]

Kim,
thanks for starting this.
I spent 6 days in the hospital due basically to dehydration. PALS, drink your water! Feel better now. Got a feeding tube in October and using it more, also for hydration. I can still eat soft foods by mouth. I have an aide 6 hours a day, my kids are still a great help. My daughter just moved back home, it's nice to have another girl in the house. Am working on getting used to the hoyer lift.

One thing I hadn't anticipated, now that I have a pwc, I can't go to people's houses, everybody has stairs. so people have been coming here which is nice. My sisters just spent a few days.

I try and stay positive. Many years ago I read a book called Simple Abundance which suggested writing 5 things every night that I am thankful for. I can't write anymore but I still think of 5 things every night. There's always something to be thankful for.

Kathy

 

[KimT]

Kathy,

I'm glad you have lots of family around to help and to keep your mind on other things. I know how dreary the Winters can be up there. Having lived in Port Henry, NY for 22 years, I know that very few homes are single story so I understand how hard it would be to visit friends. I'm so glad they come to you.

I don't have many visitors these days BUT the ones I do have are precious.

I know I'm thankful for many things. This forum is one of them!

 

[MyNexus2U]

Hi Everyone! I have been busy living. I had my feeding tube place last October. I don't need it yet but just went ahead and got it to be proactive. I made it to two OU football games in Norman. It was my first time to get to go. Wow what an experience. The last game was in early November. I spent the next few months sick with several colds and a two bouts of strep.
December and January found me quite depressed. Just when I thought I had some grip on things some changes came about faster than I could adjust or adapt to. It is really hard to explain without living it but I will try. It had been suspected that I had some cognitive involvement. I really didn't give it a lot of thought until just recently. It became evident that the reality that I was living did not line up to what my wife was telling me. She would say that I would say hurtful things to her and would act certain ways. I might remember some mild things but I certainly didn't do the things that she was saying. I started therapy again and then we had have some sessions together as well. It is during these sessions that the true reality was made aware to me. I was devastated to say the least. This goes against everything that I am. Not only was I abusive to my wife but my adult children as well. Frontal Temporal Dementia was the bad news. It is not the end of the world I a have since discovered just something else in a long list of things to have to stay on top of. Stress and irritations seem to be the triggers so I have to try and completely stay free from them. Some medications may help some but the jury is still out. Education and awareness seem to be helping us greatly but it is still a work in progress. The newest change though is taste. I have lost all tastes of sweet.
Other than the FTD most of the rest of the challenges are the same that everyone else face everyday. One quick tip for the feeding tube. I have the standard tail, ten to twelve inches. I have taken an ankle sock and cut a small hole in the bottom (toe end) and put a security badge lanyard or something similar on the top end to make a pouch that hangs around my neck. We place the tube up through the hole in the bottom of the sock and coil it up inside. We take a safety pin to close up the hole around the tube to keep it from falling out. I am fairly active and this keeps the tape off my stomach and the tube out of my way. I sleep in it as well and haven't had any problems for the past five months. We have a couple of them and just throw them in the laundry as necessary.
Back on my feet for now and looking forward to Spring and warmer days so that I can spend more time on that big deck we built last fall.

Bryan

 

[DaChief]

I am in Banner Elk NC in the mountains for a couple of days. My son wanted us to get matching tattoos so I figured wth. Who wudda thunk at 62 I would get my first tattoo.