kip-troendle
Forum Replies Created
-
Congrats to you, DeAnn! I’ve been in contact with 5 people that have had their first dose, with zero side effects. Keep us posted on your after effects, if you don’t mind. Yup, I’ll be getting mine when available.
-
Our local clinic and hospital, sends homecare to me M-F to help with morning cares and give my mother a break. So they were aware of my parents being primary caregivers. If I were you, I’d call whoever gives you the seasonal flu shot, and ask if they perhaps have a list for independent caregivers. Many nurses and caregivers in my area are electing to NOT take the vaccine yet. Hopefully independent caregivers and parents of disabled people could fill those spots.
-
I debated for several days now about bringing this personal area of my life up for discussion. I’ve seen a counselor on-and-off for about one year now. Her specialty is relationships and sexuality. It took many sessions before I completely let my defenses down, and opened up. In the end, we finally came to the following conclusion. I’m looking for two things… a soul-mate person, and someone to be {gulp} intimate with. Yes, in the “non-disabled world”, that special someone would fulfill both those voids in my life. In my “disabled world” though, it’s difficult (if not impossible) fulfilling just one of those human needs; much less both.
I am pretty certain the intimate “need” might be interpreted differently between the males and females reading this. In NO way do I want to offend anyone here; especially the fine women of this establishment {smile}! It’s just SOOO frustrating! I have 4-5 female caregivers helping me throughout the week, ranging in ages from 18 to 65. It might be the hardest thing I’ve had to overcome, in not developing feelings or urges for some of those individuals. Oh, I get the whole “keep it professional” thing, but tell that to my heart and my hormones! Not any easy task. In fact, it feels like torture at times! When our human contact is few and far between (especially now days), not crossing that forbidden line with someone you grow close to, seems almost impossible.
I ended one of my sessions with the counselor stating this… I can deal with my disability and battle the physical challenges. That’s easy compared to the intimate challenges.
I’d appreciate any feedback if anyone else has dealt with such frustrations…
-
Isn’t it frustrating?!? Luckily my parents (being essential caregivers) were able to get their first dosage last week. The clinic said they have no further information on the next roll out. C’mon people! Lets get cracking! Ya know Alyssa, if you’d quickly commit a major crime, they’d vaccinate you in prison right away! Shameful! I’m not saying prisoners shouldn’t be vaccinated! My 96 year old (law abiding) grandma should maybe come before someone on death row?
-
For me, green bananas firm things up, ripe bananas move things along. It’s a tricky line! 🙂
-
Oh, DeAnn! You hit on a topic I’m dealing with, too. I’ve been on Risdiplam/Evrysdi since 08/13/20. From my experience, the stomach yucky feelings will subside, but the diarrhea has not. If anything, my bowels seem to have “awakened” and I’d rather they go back to the way they were. I’ve tried cutting back on Miralax, but that hasn’t helped. My next try is chewable Pepto-Bismol ever-other day. I want to try everything possible before going off the Evrysdi all together. Wish I had better news! 🙁
-
I remember quite plainly the very first time I asked a girl out. I was a freshman in high school and anonymously sent the girl of my dreams (well, I thought at the time) a red rose. I waited the typical 2 days, then called her. My heart was racing as she answered the phone. After a very short, nervous few minutes, I asked her to meet me at our small-town theater to watch a movie. “I’ll let you know.”, she responded.
A few days later I was sitting in study hall when I saw her conversing with her best friend. I knew something was up as her friend kept looking back at me. It wasn’t long before she came back to where I was sitting and handed me a note. I was so nervous I could not open it. I finally had a friend of mine do what I couldn’t. He read the note to himself and as he handed it back to me he said, “Well, at least you gave it a try”. My friend was so right. I was glad that I gave it a try! I felt very dejected and never asked another girl out my entire high school term.
At my ten-year class reunion, I ran into this girl. We sat at the bar and chatted about things just as friends would. I don’t know if it was the booze or what, but she suddenly leaned over and whispered in my ear that I was the only person that ever gave her a rose and she wished she would have done things differently. She gave me a peck on the cheek as she pulled away and we exchanged smiles. I did get the opportunity to say, “oh, yeah… and where did that get me?” as I gave her a cheap grin. I never held a grudge or disrespected her for saying no to me.
Since then, I’ve only had a handful or less opportunities to go on a “date”. Even those so-called “situations” were more like friends getting together, than defining it as a date. I live in a very rural area and the dating pool is beyond shallow, to say the least. I have tried online dating websites only to be very discouraged in all cases. I thought in this day of technology, the internet would give me the best opportunity to find somebody to connect with. It definitely has not been the case.
My closest friends have suggested that I find somebody in my area that is disabled as well, to converse with and become close to. I for some reason have a problem with this. I don’t know why! They say we would have a common bond. This might be true, but I have a difficult time picturing myself with someone who has a disability. Am I wrong?
-
Thanks to the moderators and other contributors for all you’ve brought to the forums.
-
I miss (in person) movie night with a favorite cousin. I haven’t considered streaming a movie online together. I didn’t even know this existed until recently. It just doesn’t seem as if it would compare, but it beats not being together at all I s’pose.
On a side note, I was watching CNBC yesterday, and they interviewed a person who has developed a software shopping experience where multiple people can virtual shop together! In a crazy roundabout way, this pandemic has created technology which caters to our disability world. 🙂
-
Iowa starts 01/01/21, and it’s gonna be a real pain. I decided to bit the bullet and start 10 days ago for the month of December. Before I begin with the negatives, I give kudos to CareBridge (they are the scheduling company that developed the EVV technology).
I have my mother as my primary CDAC provider, with my local homecare community service coming in the mornings M-F. The homecare service hasn’t even started teaching their staff how to use EVV! That scares me and has me wondering if they might stop taking Medicaid patients all together.
I learned A LOT about setting up EVV for mom. Since many of us have one primary caregiver, scheduling can seem quit overwhelming. They are on the clock pretty much 24/7, right? CareBridge told me they are aware of this. They instructed me (and this is very helpful) to submit our daily allowed units all in one “block”. So mom is authorized about 4 hours per day for helping me. Instead of having her check in and out 5 or 6 times per day, I just check her in once for 4 hours. The EVV portal tracks the % of units used per hour of the authorized month, which is useful. It’s going to take time getting use to it, and CareBridge is updating their software daily, but hopefully it will be worth it.
I’ve heard many homecare providers are getting out of the business because they don’t want to deal with EVV. If that’s true, it’s going to be our responsibility to educate ourselves, setup EVV on our phones, and help with this “thing”.
-
I do not. My folks and I looked into different trusts a few years back, but were so overwhelmed by the different variety, we dropped the ball. I wonder if I can designate a recipient to my SNT when I pass?
-
I recall looking into ABLE a year or two ago. I was concerned about the money should I pass away. Here’s what I found… CON: If there are funds remaining in an ABLE account upon the death of the account beneficiary, they must be first used to reimburse the government for Medicaid benefits received by the beneficiary, and then the remaining funds will have to pass through probate (an often onerous court process) in order to be transferred to the beneficiary’s heirs. If a special needs trust is used, there will be no probate and, in the case of a special needs trust established with funds that don’t belong to the beneficiary, there will be no Medicaid payback.
-
Thanks, Kevin. Appreciate the info. Do you have a sign-up link? Looked at the site but not seeing it.
-
Have you tried taking a Vitamin D pill and breaking it into 2-4 pieces, then swallowing with a spoon or two of applesauce? I used to get pills stuck, too. Then I learned that little trick. I take one 5000 IUs pill every 5 days. If I take it more often, I get constipation.
-
Happy Monday, Alyssa! So is it Columbus Day, or Indigenous Peoples’ Day? 🙂 Don’t get me started on that one! My favorite holiday weekend has always been Thanksgiving Day weekend. Four days of eating too much and watching loads of football. Fun!
Congratulations on your new start-up! Exciting! I understand your concerns. In 1997 I started my own Web design business. It kept me MORE than busy for almost 20 years. What I learned late in the process, was subcontracting. I didn’t have to do it all. I hired a graphics person, for example. Now, when new customers come to me, I provide more of a “consultation service”, which I enjoy. Not so many hours and less stress.
Businesses are all different, but delegating duties of your business are important for sanity and physical reasons. 🙂
-
I agree! When I was younger, I had just enough strength to pick up a smaller book, and burry my nostrils into the pages! Oh that new smell, I loved it so! Now, I let Alexa read to me. Problem is, I just can’t seem to find anything interesting.
-
Yup, I had dental work done this past Monday. I also had my regular cleaning done in July. I had heard how careful my local dentist was since reopening, so I felt less worrisome. There was nobody in the waiting room either time (perfect)! Only the dentist and her assistant were in proximity to me (good)! I witnessed every worker changing their PPE after coming out from patient’s room (kudos)! Be smart, stay safe as possible, but keep “living”; that has been my motto.
-
I have Type 2. I was not on Spinraza before; or ever. My appetite is better, at times. Then other times, I don’t feel like eating as much. I have been taking Miralax now for many years. I’m going to start backing off on my dosage.
-
Update time! I’ve been taking Risdiplam (Evrysdi) now for 21 days. Are you sitting down? LOL! I’m noticing a change!!! It started about 10 days after the first dose, mom brought my supper into my room and she went back to the kitchen to make her plate. It took her longer than normal, but by the time she arrived back with her plate, I was 80% done with my supper and still going at it with full force. Mom looked at me with large eyes and said, “Hungy, huh?”. We didn’t say anymore, but every night since, it’s been the same. Normally, I get 50% done and request mom’s help in finishing.
My arms feel slightly stronger (very slightly), but just as importantly, I am less fatigued during the end of the day. I am able to lift my 8 oz. paper cup of coffee in the morning (Yahoo!!) without needing help. Granted my cup is 3/4 full, but I feel so grateful not needing help.
Talking longer without my neck muscles getting tired, is also worth reporting! Riding in my modified van and being able to take corners without my head flopping over, is another observation. My lungs have less ‘junk’ in the mornings, indicating better lung/diaphragm movement during sleep? I’m still doing OT twice a week, and my therapist noticed we are making minor advances! Can this all REALLY be happening?? It is!
I am nauseous only a tiny bit, but I do get some diarrhea on the days I sit on the commode. I’m hoping that gets better.
When I started taking this medicine, I honestly wasn’t very optimistic. If it kept me stable, I would have considered that a victory. My parents and doctor were so excited to get me on this, I just had to try it. What a surprise I was gifted! I see my doctor next week, at which time I’ll share with her my observations as well. 🙂
-
I didn’t read sun exposure being a problem. I notified my doctor about it, though. I’m staying out of the sun until I’m completely “normal”. Then I’ll give it another try with a little sun.
-
I started my Risdiplam 08/13. The taste is very easy to tolerate. The first 3 days, my stomach became slightly nauseous when eating food. No diarrhea, just soft BM. I had a very minor headache and I seemed a bit agitated. That might have been from being nervous about taking the new medicine. One other thing… I enjoy sitting in the sun about 15-20 minutes each day. On my 2nd day of medicine, one side of my face got sun burnt and very hot feeling and puffed up, which I know the medicine contributed to. It’s feeling better this morning. So, I honestly believe I can tolerate this medicine and I’ll be able to continue.
-
My doctor contacted me with the invitation to see her at the University of Iowa, where I then went through minor testing (blood, EKG, urine sample, etc.). After my test results were reviewed, I was contacted by Accredo Pharmacy. They thoroughly went through side effects and my instructions from taking risdiplam, to storing the medicine, to returning the emptied bottles. I weigh 96 lbs. and will be taking 5 mg. daily in liquid format.
-
I was just approved and will be receiving my risdiplam 08/11. I can maybe leave my progress here?
-
Yes! I have experienced exactly what you’ve described. I can somewhat feel my muscles tense up, wanting to do something. Thanks for your reply, Kelly! And thanks for the ginger suggestion! I forgot how good that is for calming the stomach. I also use peppermint essential oil which also calms the stomach.