Forum Replies Created
August 22, 2013 at 12:01 pm #89045Re: Sudden loss of strength/function in right arm
Sar, can’t help much with the reasons behind the loss of function, but I can relate (obviously not me but my late fiancè) to the finger crawling that eventually becomes a necessity. Carlos had a headset on his phone which he would sit at the compter with (like someone in a call centre) which he started using because he could no longer hold the phone to his ear without being in a shockingly poor posture and getting very uncomfortable.
When we were in the car and he wanted to say, put his hand on my knee, the fingers would have to crawl (or spider as I called it) across the centre console of the car and over onto my lap.
As for throwing things and throwing tantrums, I shall never take my ability to lie on the floor and pound my fists while screaming at the top of my lungs and popping the blood vessels under my eyes for granted againJuly 7, 2013 at 1:56 am #89564Re: Will I always be able to lock my knees? I have LGMD2a
I don’t know which type of LGMD my fiancè had (not for lack of trying to find out!!) but he lost the ability to walk at about 17, but could still lock knees at 36 when he passed. I relied on him being able to lock his knees to transfer him when not using his hoist. He only ever used his hoist with his PCAs, but if his dad or I were looking after him we would lift him, but this could not be achieved if he couldn’t lock his knees. I remember one time he was too tired to focus on locking knees, and he ended up sitting on the sill of the car door, rather than on the seat, freaking out because he thought he was going to fall on the ground. It’s okay though, he didn’t fall on the ground.. I picked him up and threw him on the car seat.
Sorry if this hasn’t made any sense. A little hazy (stuck in bed with food poisoning and my eyesight seems a little off).April 14, 2013 at 2:54 am #88295Re: Boyfriend with fsh
Sorry I am typing on mobile phone not PC at the moment so it’s a bit difficult :o) hopefully this will make sense!
I’ve pretty much been in your situation for the past 11 years.. I dated my partner who had limb girdle muscular dystrophy for 10 1/2 years. We met when he was 25 and I was 17, and started dating a year later when my ex (a friend of his) dumped me under very distressing circumstances. Probably a lot like you, I never saw him as having a disability.. it never even occurred to me when we started dating. I set about finding about as much out about his condition as I could which was difficult because I think it took him a couple of years to give me a name for his condition. He always used to say he had a muscle wasting condition. Nothing more than that.
He was already using a power chair when we started dating but I too noticed the decline in his ability over 11 years. But no one ever made a big deal of it.. We just dealt with new challenges as they met us.
I was just finished school so was looking for work and ended up working as a personal care attendant for people with disabilities. This helped me learn how to look after him and I got to deal with many people who had entirely different attitudes to their disability.
There was a time when he wouldn’t allow me to go to physio with him, and I wouldn’t be allowed to go to doctors or neurologists.. But that eventually changed when he could see how serious I was about our relationship and started asking me to take him and come in with him. He used to break up with me on a regular basis and say he didn’t ever want to get married nor have children, but I would eventually talk him down and tell him that he meant the world to me and come what may I always wanted to be with him and that wouldn’t ever change.
I guess luckily for me he at least had the appearance of being reasonably comfortable with who he was, and so didn’t really have any self esteem problems. But I would always tell him how much I loved him and how gorgeous he was, and I think all men like to hear that no matter of disability or not. Sometimes he would get a little bit down but I would just hold his hands and look into his eyes and tell him how amazing he was and then he would usually be okay. In fact he was usually the one giving me advice or trying to cheer me up.
It eventually got to the point where I was taking him to all of his appointments, neuro, cardio, respiratory, physio, hydro, gp dietician.. and I knew more about what was going on with his health than his parents did. It was a huge responsibility as much of the time he couldn’t remember why a doctor had put him on a medication and I would have to explain it to him. He still lived with his parents though.
Then last year at the end of June, he caught pneumonia and ended up in hospital. He was on normal ward for 2 days then ended up in intensive care for a week. I was there from opening of visiting hours till past the end of visiting hours. His parents realised very quickly that it was of huge benefit to him if I was there the whole time so his parents and his brothers would rotate as the 2nd visitor. This was because I was the only one who could understand what he was saying with his breathing mask on, and sometimes I would even be able to tell what he wanted when he didn’t tell me. Also all the doctors needed to ask him questions but would communicate with me as I knew the answers anyway. And it saved him a lot of energy.
A week after he was admitted we were faced with the news no one wants to hear. His condition wasn’t improving despite him looking better..
He was trying to save money for an engagement ring but was having trouble finding work, and wouldn’t propose if it wasn’t done ‘properly’ so I went into his hospital room late that night with his middle brother, the social worker and the doctor and proposed to him. He accepted very excitedly and I promised him that I would organise a marriage as soon as possible. He was really excited about it, as was I, but sadly his lungs had different ideas because he passed away the day I was going to lodge the papers with the courts.
I am so grateful to have had such a passionate and loving man as my fiancé and I can only hope for you that you guys find that happiness too. It’s never easy.. I know in my job that attitude had a lot to do with the relationships that we have with other people.. I have many clients with spinal cord injury, some married after their injury, some married before. One married his care worker and divorced 3 years later.
By all means, be there to support him, but you also need to be able to ask for support yourself. These forums are great for that. Carlos, my fiancé, had people to shower him, feed him and get him out of bed. That was the outside support he sought to help me and his parents. All of his other daily living activities were tended to by his parents and I. But if we’d had to do everything it would have become too much. I would shower him twice a week to save on hours with his carers that he could use for when his dad or I weren’t there.
My other suggestion is always to make sure you do things that you both enjoy. I would get upset because sometimes it seemed like we would only ever be going out to doctors appointments and we never actually went out on dates as such.. so he would always take me for afternoon tea or something after appointments or we would specifically choose an afternoon and go out and do something like drive around near the water or get gelato. I always enjoyed that.
One of the hardest things to get when you have a disability is time to yourselves. I loved just being alone with him. The simple things are always the best.
If you’d like to ask any questions, fire away. I hope my experience has given you a little insight anyway :-)
Take care!!April 4, 2013 at 12:18 pm #87255Re: What did you do today?
It’s called global warming y’all!!
All week last week here it was over 27 degrees, got to 32 on Thursday.. but this week it’s not even 20 degrees
Autumn is definitely here!
We had a couple of days in summer that were VERY hot (broke some records) like 8 January when it got to 45.2 degrees.. remember that well.April 4, 2013 at 12:08 pm #88034Re: What’s with your username?!
Been off work for 3 weeks now injured and have spent a bit of time catching up with friends (both cyber friends and real-life friends) including a visit yesterday to the hydrotherapy pool where Carlos and I would go.. boy were they surprised!
Hope all are wellApril 4, 2013 at 11:21 am #87814Re: Ostomy
Ha I love how you can come in here and talk about bowels like they’re potato chips.. so normal. And so they should be.
I don’t know if it is just that I have been desensitised, but I find it strange how squeamish people get when I talk about doing bowel care with my clients..
I have some clients who have fantastic bowels, others who have terrible trouble. I have one client who has both urinary and bowel ostomies. It was what worked better for him rather than having to sit on the toilet for hours with no result.
As for people with MD, my fiancè used to take something very similar to Movicol, called Osmolax. We didn’t like the fact that Movicol had artificial sweetener in it, so we found Osmolax which has macrogol as its active ingredient, but without the flavouring or sweetener. His diet was fantastic, and he would determine based on how his movements had been going over the last few days how much he would take.. he would have it at about 4pm and go to the toilet at about 7:15pm, and would often be off the toilet within 15 minutes! He never had bowel accidents, and would only ever have a bowel motion once a day. He had a really good routine happening.
He had significant scoliosis, lordosis and kyphosis, with pectus excavatum, and had to be set in a particular position to allow his bowels to move, but if he was in the right position, he would have very little trouble, and may just need a very light push on his tummy.
Hope you get all the support you need to make the right decision. One of my clients is hoping to do away with an enema every 2 days by using an irrigation type system twice a week.. his only concern is that the catheters that you use to irrigate are going to be more expensive than the enemas (which at this point he does not pay for).April 4, 2013 at 11:04 am #86970Re: Weird Heart feeling/sound
My fiancè used to get the same feeling and it was heart palpitations. He had a type of LGMD (never determined) so had a 24 hour holter monitor which confirmed the palpitations and irregular activity, then went to see a cardiologist.
Cardiologist had him on an ace inhibitor, and then added a beta blocker, and was happy to keep him on those but had him see an electrophysiologist to explore the possibility of an indwelling defibrillator which my fiancè was not at all keen on, and was wanting to avoid as much as possible.
I also get the same feeling.. like a very quick light flutter (cat purr) and I feel a little faint for a minute, then it rights itself, so I’m not particularly worried.. I have some anxiety and depression issues which I am putting it down to (after losing my fiancè) but if it gets any worse I’ll be off to see someone.April 4, 2013 at 10:52 am #88134Re: Writing with mouth
I have a client who is a quadriplegic, and he learned painting with his mouth with the Foot and Mouth Painters here in Australia. I am almost sure though that there are similar associations elsewhere.
He also signs cheques with his mouth.. but I’m sure they never turn out the same. He does awesome painting and drawing though.April 4, 2013 at 10:44 am #88032Re: What’s with your username?!
Wow.. not a bad memory. I actually remembered my password to log in!!
My username.. reasonably straight forward.. but I didn’t come up with it.
Carlos (my beautiful fiancè who passed away last year as you all know) used to call me his angelic princess, either in English, or “princesa” – in Portuguese..
So I chose to use it where I can as a username..July 12, 2012 at 8:26 am #85952Re: My last, and saddest, update..
Hello to all of you wonderful people..
I wanted to thank you all again so much for all your support and comforting words over the last 3 weeks..
We held Carlos’ funeral on Wednesday, and it was a beautiful sunny day (amazing granted Tuesday and Thursday were pouring rain..), and all our work really paid off. As far as funerals go, it was a beautiful day, beautiful flowers (irises, lilies, purple orchids, white roses and blue delphiniums), on a beautiful white coffin (as beautiful as coffins can be).. and the service was beautiful too.
At the end of the burial we released 6 white doves, one for each of the family, one for him and one for me. As his dad said to me, it was like the happy icing on a very sad cake.
We had 4 eulogies, his 2 brothers, his dad and I.. and without even trying they were all so different, but tied in so well together.
Basically it was a day that remembered him well and he would have been happy to have attended.
Everyone’s support here has been amazing.. thank you all so much. It has been so nice to share our experiences with people who understand, and to hear of your experiences as well.. I hope I can be of more assistance to everyone here despite my loss.. thank you all.June 28, 2012 at 2:07 pm #85866Re: Stuck in hospital.. who knows how long :(
Thanks Louise, no I don’t mind you praying for us at all.. in fact, the more the better!! We really appreciate it
I have asked many of my friends to pray for us (or if they’re not believers in prayer, at least to send healing vibes!!).. his aunty (a nun) and her sisterhood are praying for us, as are the rest of his family.
As for the blood gases, yes, luckily the respiratory doctors seem to understand, as do most of the ICU staff, that there is only so much oxygen you can have before CO2 starts creeping up. At one stage, his oxygen saturation was 78 and his CO2 was 130. Pretty frightening stuff! Lowest we have had his CO2 was 45.
When he was in HDU, they were poking him with needles for blood gases every 3 hours.. when he became unconscious, just before going to ICU, they elected to put in an arterial line in his wrist, to get blood gases every 15 minutes. That became ineffective and the poor thing now has an arterial line in his leg/groin
They do definitely have a humidifier on the Bipap machine in the hospital.. that’s for certain.
Anyways, it’s midnight here now, so I better get some sleep so I am bright and ready to face whatever tomorrow hits us with.. thanks allJune 28, 2012 at 12:22 pm #85864Re: Stuck in hospital.. who knows how long :(
Oh my God Karl, that was beautiful.
You really are a poet.
That gave me total shivers down my spine.. I am going to share that with him tomorrow when I see him, if you don’t mind. Generally the first hour or so I am there, we are alone, before his family arrive, and I think that is the most beautiful thing I have heard.
I am so appreciative of everyone’s support. It means the world to me.
He’s still in ICU.. not showing any signs of being moved out, but he improves with baby steps each day. I will take what he said to me this morning when I turned up into my heart and remember it forever “I’m so lucky to have you” – and he was OFF the mask!! (But went back on at about midday).
Thanks again to you allJune 27, 2012 at 12:11 pm #85860Re: Stuck in hospital.. who knows how long :(
Well we’re still in ICU, still on 24 hour bipap, but today we had a visit from his normal respiratory physios from another public hospital across town (think an hour’s drive) with a special machine to help him cough up the guck from his lungs… I’ve never been so happy to see them in my life!! Lovely girls they are too.. trained the staff at this hospital how to use the machine, gave it a go, and coughed up more than I could ever have expected him to cough up. It was amazing!! And he was really happy with it too
Also had a visit from the chaplain and a priest who prayed for us (his family, he and I), then later he and I had a meeting alone with social worker who was happy to help me out with a letter for my employer so that I can be there as long as necessary with him. I also intimated with her that my partner and I want to marry but holding us back is only his inability to pay for an engagement ring, which he agreed with, and asked her what we would need to do to arrange a wedding in hospital if things did look bad as this is what we would both like. And I think would be my greatest regret if I did lose him.
Also had unpleasant meeting with another doctor who basically implied that the end was near and we should start thinking about intubation, but my partner’s father and I both said we would not be discussing that until we thought it necessary to discuss.
The one thing I will say I am grateful for is the knowledge and the brilliance of the public health system here. I don’t know how the NHS works in the UK, but our health system here is amazing, and world class. The staff are (generally) amazing, the facilities in ICU are great, the social support is wonderful, and I don’t think we could ask much better.
Thanks all for your ongoing support.. sorry to unload but I think this is one of the only places where I feel I am understood.June 26, 2012 at 2:53 pm #85858Re: Stuck in hospital.. who knows how long :(
Thanks all for taking the time to respond to my rant..
I took the time to write a note here because I know you all understand.. even his parents aren’t as clued up on what can and does happen with him, as I go to all his appointments because I get what the doctors are talking about, so I don’t think his parents have a realistic idea of his needs.
Today it got worse though.. he’s now been moved from High Dependency Unit (HDU) to Intensive Care (ICU) after he passed out for one or both of two reasons..
Basically I was awoken this morning by a phone call from one of the respiratory failure doctors, asking me to come in ASAP for a case conference with his dad, myself, my partner, and doctors, which included (as I found out when I got to the hospital) a palliative care registrar and palliative care doctor. They were very quick to say that palliative care is not just for the dying, but could also be used for keeping someone who is ill comfortable, easing his anxiety and feeling of breathlessness. So it was suggested that he could use valium and morphine just to calm him down..
Well later in the day I had him up in his own commode chair (yes, more comfortable than the hospital commode!! as he’s 6ft something, rather than the 5ft that the commodes are designed for.. another creature comfort that the nurses were concerned about me bringing in for him).. and he was talking like normal, then he became very anxious, so the nurse gave him a tiny dose of morphine.
Eventually he started losing consciousness, would babble incoherently, then he became unconsciousness. I could not wake him for love or money.. Called the nurse, cleaned him up, threw him back into bed, bipap back on (he was only on oxygen when in commode). Still wouldn’t come around.
So suddenly 20 doctors appear in the room.. all sorts. I insisted on staying, so that I knew what was happening and to comfort him if he did come around.
Tried two roads.. reverse the morphine and lift oxygen/lower CO2.. Don’t know exactly which was the problem.. after 45 minutes he finally came around, but by this stage, ICU doctor is discussing intubating, then possibility of her not wanting to intubate because it wouldn’t achieve anything and that they would make him comfortable and let him “GO PEACEFULLY” – I told her that he was conscious again and we weren’t discussing a 36 year old man dying!!
So now he is in ICU, and again, who knows how long..
But thank you for your support. I very much appreciate it. I know, and the palliative care registrar told me how important it is that I am there for him as much as I can be.. I just have to convince my workApril 20, 2012 at 2:14 pm #85125Re: Power Wheels
Look for a company called Alber or E-motion. My partner has LGMD and has a standard manual chair with electric wheels fitted. You just attach the joystick to a bracket at the side, and put a battery in a pouch underneath the wheelchair.
It has done him a great service.. He’s been using it since well before we started dating 10 + years ago.March 20, 2012 at 10:10 am #84879Re: muscular dystrophy and singleness
I would love to agree here with Rachel and Sar.. Rachel is very much right in that it is about attitude. If you are confident enough, your disability will have nothing to do with anything, and Sar is right in that everyone has different experiences.
My experience is that I am an able bodied female, I was dating a guy my last year of high school who I met on the Internet. He was nice enough to begin with, my first real boyfriend, but he had a nasty side, and was also really selfish. He broke up with me, leaving me stranded in the middle of the city not knowing how to get home.. Now this gets confusing so let’s call my current boyfriend mr nice and my ex boyfriend mr nasty. Mr nice and mr nasty went to a course together so I had met mr nice through mr nasty, and had seen him a few times. When I turned 18, I was dating mr nasty. I went out for lunch with some school friends, their boyfriends, mr nasty and mr nice. This was only the second time I had ever met mr nice. Mr nasty didn’t pay for my lunch, and bought me a cd for my birthday, not even wrapped. Mr nice had bought me perfume and paid for my lunch.
When mr nasty broke up with me, he was nasty about it. He went to class and said not very nice things about me. A couple of weeks later I had a phone call from mr nice, he offered a shoulder to cry on, and a listening ear. We went out to coffee a few times, then just before valentines day we decided to make our relationship official. A dozen long stemmed red roses for valentines day, dinner, he took me shopping to buy clothes for interviews for jobs as I had just left school.
Now, I never even noticed his disability. He exuded confidence, respects women, respects his parents, loves helping people, and loves to offer advice to people. Sure, he can’t drive, he can’t take out the rubbish, he can’t shower himself, he can’t cook, he can’t put himself to bed, he can’t dress himself, but guess what.. I fell I love with him as a person, his personality, his love and so on. His disability is just something I have learned to deal with.
10 years on, his condition has certainly deteriorated. But I still love him, and he still loves me.
Good luck with it all.. Yes, it may take a while to find the right girl, but she’s out there!!March 6, 2012 at 5:12 am #84526Re: help advice please ! LGMD 2E
Hi there!! It was very hard for me to read through your messages, and to all the responses you have already. In a way I can relate to what you are going through, but it’s slightly different.
My partner and I have been together for 10 years. He has been using a power wheelchair since well before I knew him. So by the time we started dating he had well and truly come to terms with his condition (he also has LGMD but his type is undetermined) as he was diagnosed at 8 and we started dating when he was mid 20s and already using a wheelchair.
He has also broken up with me a few times, citing such reasons as “I don’t see myself having a marriage and children” and “what would I have to contribute”.
At the end of the day I usually talk him around.. I love him and want to marry him and hopefully have children one day.. I don’t care that I have to do all the physical work in the relationship.. I love him for who he is, not what he is.
I don’t think doctors should ever give someone with MD a ‘timeframe’. Won’t listen to anyone who does.
I wish you all the best with your kids, and hopefully your wife will eventually come around and realize how she’s hurting herself and you.