Diverticulitis and Muscular Dystrophy

Hi @ dbwhitter Well here I go again. I started this two other times today and both time they disappeared when I accidently hit something on the keyboard. Sure wish one could save what they write and come back to it later to finish. In 2004 and 2006 I had both knees replaced and both time I had no problems from the git-go! In fact after the L knee (2004)was done I went back in about two weeks and the nurse asked me where was my cane. I said I haven't needed a cane and she said they should put me on a pedestal in the waiting room! BUT, before I had any surgery, the doctor was alternating between Synvisc and cortisone shots to delay surgery as long a possible. One time he gave me a cortisone shot on a Friday and I was fine for the weekend, but I woke up Monday morning very weak. I basically did nothing all week and Friday, I was back to what felt like normal. The next time I saw him, I mentioned that to him and he said: "we'll never give you another big dose of cortisone.". Two years later I had the R one done and two months after the surgery, I was back for a check-up and he said that there was fluid in the knee and he would have to aspirate it. However, he told his fellow to do it, but try as he might the fellow couldn't so I said to get the Dr to do it which he did. That also was a Friday and was fine for the weekend. but Monday morning I was weak again so I knew he not just aspirated the knee. It is possible that the fellow was following routine so had loaded a syringe with cortisone and the surgeon saw the loaded syringe and injected it without recalling the prior comment. But I thought, OK by the next Friday I'll be OK again but this time the damage was permanent. I used to work for a veterinarian and when there was something that was contraindicated for a certain animal, it was written on the FRONT of their chart. No doctors where I used to live could put a name to my disability.

In 2010 I moved to a cottage at a retirement community alone as I have no surviving family. I flew to Mayo in Dec of 2013 from Lancaster, PA to Minn. (3 flights) and that is where they Dx me after they did a biopsy and other tests. They recommended PT so as soon as I got home so I tried to locate a physical therapist. We have PT people that come to the campus here, but when I fell and broke my arm earlier, I was not impressed with them and anyway I knew that I'd probably work at PT harder with a man! So I called my neurologist and he recommended a place for me.He said to go to Brian Hartz PT and when I got there I asked for Brian, not knowing he owned the practice with 3 sites about 10 miles apart. He was 42 at that time and from the start we have a ball together. He is pleased how I follow his advice and even come up with some exercises at home based on what he does with me there. Brian and I have so much in common, we are a "match" right down to the foods we like and dislike. Even our phone numbers are similar and he allows me to email him during the week. His wife has her CPA and manages the financial part of the practice. So since Dec 5th of 2015 I have seen Brian weekly except when he is on vacation or has a meeting to attend. He only works 3 half days a week, but I have my own time slot. To give you an idea how he runs the practice, in Nov of 2012, he closed all 3 offices and gave his staff a four day weekend (not over Thanksgiving) and flew all of them and their spouses or boy/girl friends to Key West for the 4 days!!!!!!! There was 33 that he took to Florida! I work hard at PT just to see his smile. If you google Hartz Physical Therapy in Lititz, PA, you can see his practice. In the main office he even has a Endless Pool (with a current so it is endless.) I used his pool for the first few months I was there but then started to use the pool here and doing the exercises he has Rx'd. for me and doing just land-based PT with him or his assistant. at the office. Unfortunately, my walking has slowly become more difficult, but I use no canes in the house and when I walk around the campus, I use 2 canes.. Have you seen on Connect where I previously described my walking project here on the campus? I use a measuring wheel to track my walking distance and since Aug 13, last fall as of this weekend I have walked 50 ( yes, fifty) miles. The measuring wheel is tied to my left cane and drags behind me! And so it counts up, not down since it is behind me, I turn it over and put duct tape on the corner that drags.

Where do you live?

Whoops I dropped the mouse and almost lost this again so I am going to sign off before I lose it! @gailfaith

Jump to this post

Hi @ dbwhitter Well here I go again. I started this two other times today and both time they disappeared when I accidently hit something on the keyboard. Sure wish one could save what they write and come back to it later to finish. In 2004 and 2006 I had both knees replaced and both time I had no problems from the git-go! In fact after the L knee (2004)was done I went back in about two weeks and the nurse asked me where was my cane. I said I haven't needed a cane and she said they should put me on a pedestal in the waiting room! BUT, before I had any surgery, the doctor was alternating between Synvisc and cortisone shots to delay surgery as long a possible. One time he gave me a cortisone shot on a Friday and I was fine for the weekend, but I woke up Monday morning very weak. I basically did nothing all week and Friday, I was back to what felt like normal. The next time I saw him, I mentioned that to him and he said: "we'll never give you another big dose of cortisone.". Two years later I had the R one done and two months after the surgery, I was back for a check-up and he said that there was fluid in the knee and he would have to aspirate it. However, he told his fellow to do it, but try as he might the fellow couldn't so I said to get the Dr to do it which he did. That also was a Friday and was fine for the weekend. but Monday morning I was weak again so I knew he not just aspirated the knee. It is possible that the fellow was following routine so had loaded a syringe with cortisone and the surgeon saw the loaded syringe and injected it without recalling the prior comment. But I thought, OK by the next Friday I'll be OK again but this time the damage was permanent. I used to work for a veterinarian and when there was something that was contraindicated for a certain animal, it was written on the FRONT of their chart. No doctors where I used to live could put a name to my disability.

In 2010 I moved to a cottage at a retirement community alone as I have no surviving family. I flew to Mayo in Dec of 2013 from Lancaster, PA to Minn. (3 flights) and that is where they Dx me after they did a biopsy and other tests. They recommended PT so as soon as I got home so I tried to locate a physical therapist. We have PT people that come to the campus here, but when I fell and broke my arm earlier, I was not impressed with them and anyway I knew that I'd probably work at PT harder with a man! So I called my neurologist and he recommended a place for me.He said to go to Brian Hartz PT and when I got there I asked for Brian, not knowing he owned the practice with 3 sites about 10 miles apart. He was 42 at that time and from the start we have a ball together. He is pleased how I follow his advice and even come up with some exercises at home based on what he does with me there. Brian and I have so much in common, we are a "match" right down to the foods we like and dislike. Even our phone numbers are similar and he allows me to email him during the week. His wife has her CPA and manages the financial part of the practice. So since Dec 5th of 2015 I have seen Brian weekly except when he is on vacation or has a meeting to attend. He only works 3 half days a week, but I have my own time slot. To give you an idea how he runs the practice, in Nov of 2012, he closed all 3 offices and gave his staff a four day weekend (not over Thanksgiving) and flew all of them and their spouses or boy/girl friends to Key West for the 4 days!!!!!!! There was 33 that he took to Florida! I work hard at PT just to see his smile. If you google Hartz Physical Therapy in Lititz, PA, you can see his practice. In the main office he even has a Endless Pool (with a current so it is endless.) I used his pool for the first few months I was there but then started to use the pool here and doing the exercises he has Rx'd. for me and doing just land-based PT with him or his assistant. at the office. Unfortunately, my walking has slowly become more difficult, but I use no canes in the house and when I walk around the campus, I use 2 canes.. Have you seen on Connect where I previously described my walking project here on the campus? I use a measuring wheel to track my walking distance and since Aug 13, last fall as of this weekend I have walked 50 ( yes, fifty) miles. The measuring wheel is tied to my left cane and drags behind me! And so it counts up, not down since it is behind me, I turn it over and put duct tape on the corner that drags.

Where do you live?

Whoops I dropped the mouse and almost lost this again so I am going to sign off before I lose it! @gailfaith

Jump to this post

Hi @ dbwhitter Well here I go again. I started this two other times today and both time they disappeared when I accidently hit something on the keyboard. Sure wish one could save what they write and come back to it later to finish. In 2004 and 2006 I had both knees replaced and both time I had no problems from the git-go! In fact after the L knee (2004)was done I went back in about two weeks and the nurse asked me where was my cane. I said I haven't needed a cane and she said they should put me on a pedestal in the waiting room! BUT, before I had any surgery, the doctor was alternating between Synvisc and cortisone shots to delay surgery as long a possible. One time he gave me a cortisone shot on a Friday and I was fine for the weekend, but I woke up Monday morning very weak. I basically did nothing all week and Friday, I was back to what felt like normal. The next time I saw him, I mentioned that to him and he said: "we'll never give you another big dose of cortisone.". Two years later I had the R one done and two months after the surgery, I was back for a check-up and he said that there was fluid in the knee and he would have to aspirate it. However, he told his fellow to do it, but try as he might the fellow couldn't so I said to get the Dr to do it which he did. That also was a Friday and was fine for the weekend. but Monday morning I was weak again so I knew he not just aspirated the knee. It is possible that the fellow was following routine so had loaded a syringe with cortisone and the surgeon saw the loaded syringe and injected it without recalling the prior comment. But I thought, OK by the next Friday I'll be OK again but this time the damage was permanent. I used to work for a veterinarian and when there was something that was contraindicated for a certain animal, it was written on the FRONT of their chart. No doctors where I used to live could put a name to my disability.

In 2010 I moved to a cottage at a retirement community alone as I have no surviving family. I flew to Mayo in Dec of 2013 from Lancaster, PA to Minn. (3 flights) and that is where they Dx me after they did a biopsy and other tests. They recommended PT so as soon as I got home so I tried to locate a physical therapist. We have PT people that come to the campus here, but when I fell and broke my arm earlier, I was not impressed with them and anyway I knew that I'd probably work at PT harder with a man! So I called my neurologist and he recommended a place for me.He said to go to Brian Hartz PT and when I got there I asked for Brian, not knowing he owned the practice with 3 sites about 10 miles apart. He was 42 at that time and from the start we have a ball together. He is pleased how I follow his advice and even come up with some exercises at home based on what he does with me there. Brian and I have so much in common, we are a "match" right down to the foods we like and dislike. Even our phone numbers are similar and he allows me to email him during the week. His wife has her CPA and manages the financial part of the practice. So since Dec 5th of 2015 I have seen Brian weekly except when he is on vacation or has a meeting to attend. He only works 3 half days a week, but I have my own time slot. To give you an idea how he runs the practice, in Nov of 2012, he closed all 3 offices and gave his staff a four day weekend (not over Thanksgiving) and flew all of them and their spouses or boy/girl friends to Key West for the 4 days!!!!!!! There was 33 that he took to Florida! I work hard at PT just to see his smile. If you google Hartz Physical Therapy in Lititz, PA, you can see his practice. In the main office he even has a Endless Pool (with a current so it is endless.) I used his pool for the first few months I was there but then started to use the pool here and doing the exercises he has Rx'd. for me and doing just land-based PT with him or his assistant. at the office. Unfortunately, my walking has slowly become more difficult, but I use no canes in the house and when I walk around the campus, I use 2 canes.. Have you seen on Connect where I previously described my walking project here on the campus? I use a measuring wheel to track my walking distance and since Aug 13, last fall as of this weekend I have walked 50 ( yes, fifty) miles. The measuring wheel is tied to my left cane and drags behind me! And so it counts up, not down since it is behind me, I turn it over and put duct tape on the corner that drags.

Where do you live?

Whoops I dropped the mouse and almost lost this again so I am going to sign off before I lose it! @gailfaith

Jump to this post

@dbwhitted Hello and welcome to Mayo Connect. I'm happy that you joined our online patient support network. This is a great place to find support and share health experiences with others. I also have had multiple bouts of diverticulitis and also a mild form of Parkinson's. In spite of over 9 flare-ups of diverticulitis I have not considered surgery and work with a soft diet as much as possible. (Parkinson's patients also have a hard time with anesthesia.) While I recover from a flare-up I change to a diet primarily liquid (Ensure, jello, etc.) and then add in soft foods (scrambled eggs, baked/mashed potatoes, cooked salmon, etc.) I keep fresh fruits and veggies to a minimum at all times. Once I begin to eat fresh veggies, I roast them in the oven with olive oil until the veggies are tender. I usually have onions, asparagus, tomatoes, and whatever else may be in my refrigerator. I always stay away from the roughage of broccoli and cauliflower. However, you can best tell what is safest for your own digestive system. by trial end error (with as few errors as possible). Best wishes to you.
Also by God's grace~

Jump to this post

I'd like to add my welcome, @dbwhitted, and thank you for sharing some of the issues that you face. As @hopeful33250 mentioned, you have come to the right place to find support.
Although we don't have anyone who has both Muscular Dystrophy and Diverticulitis, I will do my best to connect you with a few members who have one or the other.
I'd like to introduce you to @gailfaith, @jmbjar, and @nithiyadasarath who have discussed MD. In the diverticulitis group, I'd like to introduce you to @retrebotic, @disfraz1, @allegro, @michellr, @aigimw, @lindainarizona, @wesbig, @user_cha5e73f6, @akogut, and @peterhamilton. I am confident that they will provide some insight.
According to Mayo Clinic, limited mobility in patients with MD can cause digestive issues; you can read more about it here:
http://mayocl.in/1btdmyi

@dbwhitted, what is your biggest challenge living with MD and diverticulitis? What has helped you the most to manage this?

Jump to this post

@dbwhitted Hello and welcome to Mayo Connect. I'm happy that you joined our online patient support network. This is a great place to find support and share health experiences with others. I also have had multiple bouts of diverticulitis and also a mild form of Parkinson's. In spite of over 9 flare-ups of diverticulitis I have not considered surgery and work with a soft diet as much as possible. (Parkinson's patients also have a hard time with anesthesia.) While I recover from a flare-up I change to a diet primarily liquid (Ensure, jello, etc.) and then add in soft foods (scrambled eggs, baked/mashed potatoes, cooked salmon, etc.) I keep fresh fruits and veggies to a minimum at all times. Once I begin to eat fresh veggies, I roast them in the oven with olive oil until the veggies are tender. I usually have onions, asparagus, tomatoes, and whatever else may be in my refrigerator. I always stay away from the roughage of broccoli and cauliflower. However, you can best tell what is safest for your own digestive system. by trial end error (with as few errors as possible). Best wishes to you.
Also by God's grace~

Jump to this post

@dbwhitted Hello and welcome to Mayo Connect. I'm happy that you joined our online patient support network. This is a great place to find support and share health experiences with others. I also have had multiple bouts of diverticulitis and also a mild form of Parkinson's. In spite of over 9 flare-ups of diverticulitis I have not considered surgery and work with a soft diet as much as possible. (Parkinson's patients also have a hard time with anesthesia.) While I recover from a flare-up I change to a diet primarily liquid (Ensure, jello, etc.) and then add in soft foods (scrambled eggs, baked/mashed potatoes, cooked salmon, etc.) I keep fresh fruits and veggies to a minimum at all times. Once I begin to eat fresh veggies, I roast them in the oven with olive oil until the veggies are tender. I usually have onions, asparagus, tomatoes, and whatever else may be in my refrigerator. I always stay away from the roughage of broccoli and cauliflower. However, you can best tell what is safest for your own digestive system. by trial end error (with as few errors as possible). Best wishes to you.
Also by God's grace~

Jump to this post

@dbwhitted Hello and welcome to Mayo Connect. I'm happy that you joined our online patient support network. This is a great place to find support and share health experiences with others. I also have had multiple bouts of diverticulitis and also a mild form of Parkinson's. In spite of over 9 flare-ups of diverticulitis I have not considered surgery and work with a soft diet as much as possible. (Parkinson's patients also have a hard time with anesthesia.) While I recover from a flare-up I change to a diet primarily liquid (Ensure, jello, etc.) and then add in soft foods (scrambled eggs, baked/mashed potatoes, cooked salmon, etc.) I keep fresh fruits and veggies to a minimum at all times. Once I begin to eat fresh veggies, I roast them in the oven with olive oil until the veggies are tender. I usually have onions, asparagus, tomatoes, and whatever else may be in my refrigerator. I always stay away from the roughage of broccoli and cauliflower. However, you can best tell what is safest for your own digestive system. by trial end error (with as few errors as possible). Best wishes to you.
Also by God's grace~

Jump to this post

I'd like to add my welcome, @dbwhitted, and thank you for sharing some of the issues that you face. As @hopeful33250 mentioned, you have come to the right place to find support.
Although we don't have anyone who has both Muscular Dystrophy and Diverticulitis, I will do my best to connect you with a few members who have one or the other.
I'd like to introduce you to @gailfaith, @jmbjar, and @nithiyadasarath who have discussed MD. In the diverticulitis group, I'd like to introduce you to @retrebotic, @disfraz1, @allegro, @michellr, @aigimw, @lindainarizona, @wesbig, @user_cha5e73f6, @akogut, and @peterhamilton. I am confident that they will provide some insight.
According to Mayo Clinic, limited mobility in patients with MD can cause digestive issues; you can read more about it here:
http://mayocl.in/1btdmyi

@dbwhitted, what is your biggest challenge living with MD and diverticulitis? What has helped you the most to manage this?

Jump to this post

@dbwhitted Hello and welcome to Mayo Connect. I'm happy that you joined our online patient support network. This is a great place to find support and share health experiences with others. I also have had multiple bouts of diverticulitis and also a mild form of Parkinson's. In spite of over 9 flare-ups of diverticulitis I have not considered surgery and work with a soft diet as much as possible. (Parkinson's patients also have a hard time with anesthesia.) While I recover from a flare-up I change to a diet primarily liquid (Ensure, jello, etc.) and then add in soft foods (scrambled eggs, baked/mashed potatoes, cooked salmon, etc.) I keep fresh fruits and veggies to a minimum at all times. Once I begin to eat fresh veggies, I roast them in the oven with olive oil until the veggies are tender. I usually have onions, asparagus, tomatoes, and whatever else may be in my refrigerator. I always stay away from the roughage of broccoli and cauliflower. However, you can best tell what is safest for your own digestive system. by trial end error (with as few errors as possible). Best wishes to you.
Also by God's grace~

Jump to this post