I'm not sure if the is a health question, or a mental health question. I was diagnosed back in 2002, when I still worked full-time, drove my cute PT Cruiser, and thought I still had lots of adventure ahead of me. Slowly, over the past few years I have lost a lot of strength and some mobility, stopped driving, have difficulty using public restrooms, and became more or less housebound. Maybe by choice, or by dependence, or just hiding. I've had to move in with my daughter and her 15 yr old son, giving up my independence and freedom. Most days I handle this all with a smile, accepting what has come my way. But, what I wonder most, is how to fill the loneliness, boredom, and the occasional depression that sometimes descends on me. I would like to find a blog or website to communicate with others enduring a similar fate. I would like to reach out, make some online friends, and just offer support when needed. If anyone knows where I can do this, or someone who needs a friend, just let me know......
The following 2 users give hugs of support to: yncruzr 2807 (06-28-2011), Dreaman (06-29-2011)
You found the place. You can talk to others right here.
MD certainly affects a person mentally as much or more than than it affects them physically. I also went from being very active.....golfing, swimming, hiking, etc. I loved the outdoors. Now, I spend days at a time in the house without stepping outside. (I can't get in and out of the house without help). I am able to walk around inside but I always use my scooter outside.
I live with my wife and 2 daughters who get me out on weekends but I am home alone many days each week from 8-5.
I keep busy by emailing friends and family, doing stuff online and I do a LOT of reading. I got a Kindle this winter and I love it. I can download books whenever I need something new to read without having to go to the store or library. I always ask for gift cards so I can purchase books, magazines and newspapers for my reader.
This is a GREAT site to share your stories and concerns with others who are all going through the same thing. It's not permitted to exchange private information on the public forum (other than first name) but I've found it's possible to learn and share a lot anyway. I've talked with others here for 6 years now and I visit the site several times a week to "talk".
Just found this message board today and am relieved to find other people out there who have the same feelings as me both good and bad. I was diagnosed with MD limb girdle last year and am still very new to the whole thing and too feel shocked, lonely, sad, fed up but also very grateful that I am still here.
I will be checking back here regularly and hope to make a few online friends (if I can figure out this message board?) regards Hxx
The following user gives a hug of support to 2807: Dreaman (06-29-2011)
I am new to the message boards myself, but it seems like a great place to share info and find support. I know we all have families and friends, but sometimes we need our peers who know what we are going through, and hopefully want to share coping methods or just offer friendship. I will be coming back often also and hope to get to know you better. Cheers and take care til next time............L
Thank you for all your kind words! I too, read constantly, use my online resources, and watch way too much tv. I only leave the house periodically depending on weather, mood, and destination. I have wonderful daughters that ensure all my needs are met, but sometimes I miss my old life. I relocated a few years ago to live with my oldest daughter, so unfortunately, most of my friends live several hours away, as does my youngest with her children and I don't get to see them as often as I would like.
I will be checking back and see how you are doing too. It was nice to have someone respond so quickly to my 1st message. Gives me hope I have come to the right place,
Welcome to the site. I find this site to be a wonder way of communication as everyone listens and respond without just leaving you wondering if anyone actually read your postings
I have a combination of LGM and FHSMD. I was diagnosed at 19 ad now after my birthday 2 weeks ago reached the age of 39 (sigh!)
I too go through mental and physical struggles. I'm single with 2 teenage boys and I think they keep me too busy to even think of my MD.
Mostly I'm a positive person except when I fall (that is a lot) when I change into a self-pity idiot. Doesn't last long though
I don't go out much and use a scooter like Mark when I do. Soooo much easier. In the beginning you are a bit self-conscious but later you just don’t care and enjoy the “freedom” this offers. Don’t worry if it takes you a while to get there. My scooter stayed in the garage for a year before I admitted to myself that I need it.
2807 we will support you esp in your early stages and feel free to ask any questions and know on this site we are straight forward and you will get honest answers if you up to it
2807 we will support you esp in your early stages and feel free to ask any questions and know on this site we are straight forward and you will get honest answers if you up to it
Mandy[/QUOTE]
Thank you Mandy and I am sure I will be asking questions am still shocked to be told there is nothing that can be done it is genetic and thats it. Spend time surfing and looking for help/answers which was how I found you guys.....
Will be in touch Hx
You are definately in the right place. Mark and the others have helped me so much and I have only been on since May.
I am 59 F with limb-girdle MD. I too read alot and have a kindle its the greatest thing ever.Besides books you can journal-I love sudoku and word search-I have Chicken soup for soul books on there( great short stories that will pick you up or make you cry but great reading.The possibilities are endless.The price is well worth it and it is small and light so you can take it anywhere. I also am a crafter this really helps.I knit,crochet,scrapbook,and love making pictures come alive with cross stitch(not the stamped kind but the counted cross stitch).I used to feel guilty doing this cause I felt like I was being lazy but now if I complete something I feel like I at least accomplished something.Guilt no more.
Hang in there, D
You are definately in the right place. Mark and the others have helped me so much and I have only been on since May.
I am 59 F with limb-girdle MD. I too read alot and have a kindle its the greatest thing ever.Besides books you can journal-I love sudoku and word search-I have Chicken soup for soul books on there( great short stories that will pick you up or make you cry but great reading.The possibilities are endless.The price is well worth it and it is small and light so you can take it anywhere. I also am a crafter this really helps.I knit,crochet,scrapbook,and love making pictures come alive with cross stitch(not the stamped kind but the counted cross stitch).I used to feel guilty doing this cause I felt like I was being lazy but now if I complete something I feel like I at least accomplished something.Guilt no more.
Hang in there, D
I LOVE my Kindle. If anyone with MD has thought about one, you can make the font as big as you need (up to 1/2 inch at least) and with most of the newer books the Kindle will read to you and turn the pages. (Male or female voice, fast or slow). All you have to do is get it started.
The Following User Says Thank You to michigani For This Useful Post: Dreaman (07-01-2011)
To all,
I don't know which is worse the physical or the mental. I guess It depends on the day.
I get my boost every day from a poem my daughter wrote( she passed away from Cystic Fibrosis in 1996 at the age of 19) I would love to put it in here but not sure how. Its incredible coming from someone with so many problems.Any way she had a homeschool teacher that was at the house one day and to make a long story short somewhere in the conversation she asked us how we could laugh about the situation and my daughter spoke up and said "you either laugh or you can cry and we chose to laugh".
Any way no matter what your situation there is someone on here that will listen even if you just need to vent. Sometimes that is all we need to pick up and go til the next time.
We all go through this at one time or another.Just remember we are never as alone as we feel just reach out and here we all understand one way or another.
Later, Dreaman
The following user gives a hug of support to Dreaman: michigani (07-02-2011)
The Following User Says Thank You to Dreaman For This Useful Post: 2807 (07-01-2011)
Whew! It was a hot one here in sunny California. Going to be over 100+ this entire July 4th weekend. Makes it hard to think about going outside. The heat just zaps all my energies. Spent the day reading Bent Road by Lori Roy, very good, and watching lots of shows on Netflix. Oh how I love Netflix online!
Dreaman, I totally agree with you on how we deal, it's all about choices. We can be depressed (which we know flares it's ugly head from time to time) or we can laugh. I too choose laughter if I can. I have a little mantra I say to myself in the mornings, "Today I CHOOSE to be positive, upbeat, and optimistic." And after repeating this a few times I am in a good mood.
Everyone have a good weekend.............
Last edited by yncruzr; 07-01-2011 at 08:05 PM.
Reason: mis-spelling
The Following 4 Users Say Thank You to yncruzr For This Useful Post: 2807 (07-02-2011), Dreaman (07-02-2011), michigani (07-02-2011)
You are both right. A positive attitude is paramount to dealing with MD or any illness. For years I've told others "By far the most important thing is what's going on in your head. I'd MUCH rather be happy with MD then depressed with a healthy body".
I truly believe this. I know a few people that feel very miserable all the time and they have their complete health. Their bodies allow them to do whatever adventurous thing that life offers and yet they're unhappy and grumpy all the time. I'll take my MD any day and enjoy the birds and squirrels in the yard, and a good book in the evening and most of all, the roof over my head and my family. I've got lots of blessings and I'm happy.
Dreaman - I'm so sorry about your daughter. Some families seem to get a little bumpier road than others. Both my big sisters have died from illnesses unrelated to MD (Diabetes and MS). I'm my mom's last child, but we're close and enjoy what we have. I'm sure we'd all enjoy your daughters beautiful poem. If you have it on the computer you can cut and paste it right to this thread.
Well......have a wonderful weekend everyone. It's 100 degrees in Michigan today. I went outside for an hour but for a change, it's nicer inside !
Mark,
85 in Montana I guess we're the cool spot.
So sorry about your sisters.I lost my brother from a heart attack he was 58,(my dad passed away at age 51 also a heart attack,my mom died (2003) in an auto accident when we went to SC for my nephews wedding my brother(above was driving but wasn't his fault)my mother and my husband were in the car it rolled a couple times and my mom went out the back window. Died on the spot-no seat belt.But I still have one brother still living.
Thanks for the info on how to get her poem so you guys can see it. I can almost guarentee after reading it there will be no more pitty parties( well ya we will all still have bad days) but maybe not as many.
Hope you and your family have a wonderful weekend and I for one am glad it's not a hundred degrees here. It will get down to 52 tonight so the mornings are cool.
Later, Dreaman
The following user gives a hug of support to Dreaman: michigani (07-04-2011)
I’m listening to Bette Midler – Rose while reading the posts. I’m getting tears in my eyes reading how so many of you lost family members in different ways
I can be so fortunate that I haven’t lost anyone to any illness or accident that I’m close to and hope that will never happen while I’m still on earth.
I went to a party of a friend last night at a venue that was held under tents. It’s freezing cold in Cape Town and I went prepared with blankets and warm clothes.
Beforehand I made sure those 2 hours prior to going I had nothing to drink to ensure that I would not need the restrooms at all and maybe be able to have 1 coke while I’m there
Well arriving at this place I gave a big sigh. It’s been raining the whole day and the parking bay was covered in mud. There was so many stairs everywhere but luckily I took my manual wheelchair along.
My sister is a bad driver and I was clinging to the chair fearing that I might tip over any second as the part to the path was so unsteady and full of mud holes.
Some nice young men came over to help up the stairs and it was quite a mission to get to the tent where the party was held due to masses of people watching rugby and me having to squeeze past everyone.
I met a woman sitting at the same table as me and we starting chatting about things in general. She didn’t see the chair as I moved over to a normal chair and the wheelchair was moved to another place.
She asked me to join her to the restrooms and I informed her that I couldn’t because of the chair and all the steps and people.
I explained to her what was wrong with me and she got tears in her eyes and told me her best friend has MD. She is at a stage where she needs to be helped with basically everything.
I felt so sorry for her and this was the first time I actually saw the other side of MD and how it affects someone else. I had to console her and ensure her that all was fine and that we have strong wills and adapt to our circumstances.
My friend who’s birthday it was came over to find out what’s wrong and why her friend was crying and holding my hand and told her that she musn't worry about me that I’m a strong person and deal quite well with this.
It was an eye opening for me to actually see how other people deal with this and how they see you. I was also thanked that I made such an effort to come and other people gave excuses like the flu not to go
I wanted to stay a while but unfortunately the cold overwhelmed my body and my legs got so stiff that I had to leave in order to be able to drive home and walk into the house alone (my boys spend the weekend with dad)
I am really glad I went and not try and get out of it as I usually do and maybe just maybe I said something to this woman to make HER deal with the MD a bit better.
The following 3 users give hugs of support to: mandy37 Dreaman (07-04-2011), michigani (07-04-2011), yncruzr (07-03-2011)
Dylan Thomas wrote "Do not go gentle into the good night, Rage, Rage, against the dying light." But I think I like Don Henley's (Eagles) take on it better, "I will not lie down, I will not go quietly". This was the way I lived my life before MD, and I decided early on, after diagnosis, to use this as my life motto. We cannot just lie down and wait for our lives to be over, though some days it seems like a dismal future. We have to rage, give MD a kick in the pants, stand strong in the face of adversity.
I think by chatting and posting we can encourage one another. Give each other hope, strength, and support. Mandy37, you gave that lady what she needed at that moment, you listened. We all want others to hear us, see us, remember us, but we have to do the same in return. You are right! It is hard for our children, families and friends to see us become helpless, but we have to understand as hard is it is for us, it is just as hard for them to watch.
A friend once told me that I couldn't move on with my life until I mourned the person I use to be. She was right! I realized at the time I was hiding, unhappy, stopped short, not knowing the future. Once I mourned my old active self, accepted what may come, I could move on and be happy again. Live it a day at a time. Play the hand that was dealt me. It's been 10 yrs and I am still walking with aid of a cane or walker. Had to give up driving (right side mobility lost), but I find joy in something if I can everyday. A book, my cats, my family, an old friend, something.
And now I add this group to my list of good things. You have all raised my spirits! I enjoy reading your thoughts and want to learn more about all of you. You have all given me hope beyond my limited lifestyle................Thank you!
Last edited by yncruzr; 07-03-2011 at 12:59 PM.
The Following 2 Users Say Thank You to yncruzr For This Useful Post: 2807 (07-03-2011), Dreaman (07-04-2011)
husband and I are discussing getting a new car at present we have a manual car. He said maybe we should get an automatic,,,when I asked why he said it would be easier for you......
At present I am fine driving our car and sad that he thinks that BUT GLAD too that he thiks that.
I don't know what is ahead and that is what I do find hard, and try I suppose not to think tooo much about the future but when I wake up each morning be thankful for today as that is all we have really got.
2807 You're husband sounds real thoughtful - that is supper. I would say if you like the standard -stick with it but at the same time depending on your financial situation (meaning if you can't afford to switch cars whenever you want) the auto may be a better choice.
Mandy That was great that you got out. I have panic attacks over the same things you mentioned but it seems once you get past that and just go it usually turns out to be a good time.
nycruz Great way of thinking.We will all benefit from your words thanks
Mark Sometimes I get too chatty and vent when I probably shouldn't but thank you so much for being there and giving us someone to vent to. You seem to be the senior member here and seem to have a lot of our answers. I just hope we can be there for you.
Thanks to you all, Dreaman
The Following 2 Users Say Thank You to Dreaman For This Useful Post: 2807 (07-04-2011), michigani (07-06-2011)
Homebound 
Re: Homebound 
