Marie asked me how I was doing ........... The above image is of my home that I had whilst living on the canals, it brings back so many good memories so I thought I would share it.
Over the past 2 weeks my walking has become more and more difficult because my balance has got worse and also my left arm is becoming more rigid and useless. I still go to the gym every day and have my arm massaged once a week.
Some weeks ago I bought a shopper that I find useful......... It has a handle like a pram which means I can push it with one hand and I am also far enough away from the wheels that I don't trip up on them. This video I took shows it in use..........
Patrick your barge looked lovely inside. No wonder you loved it.
Your trolley looks good but I hope you don't fall over. It doesn't look very sturdy. Have you not tried a rollator? It might be worth a try? It worries me that you are only able to use one arm and your walking is getting worse.
Can you have your arm massaged more often? Even if you have to pay for it? Glad you are still going to the gym. Yoga is supposed to be good for Parkinson's too but don't know if it would be any good for PSP. Might be worth asking though as I am sure you could get an exercise sheet for you to exercise when at home?
Gosh, sorry for being so bossy! Just want you to be with us for as long as possible but able to get about and enjoy life.
Yes I tried a rollator but my left arm locked up on it and you can't push them with just one arm. Also my feet were so near the wheels that it was easy to trip over them.
Because the stiffness is caused by the brain the only thing that the massage does is tone the muscles, maybe I will up it but at the moment the muscle tone seems ok.
No need to say sorry.......... it is good to have your thoughts.
You are an amazing person. Whatever this disease throws at you you fight back. I hope you cope alright with your trolley. I know the massage helps your muscles but can you get your arm checked to see you are not losing any muscle tone?
You were going to the hospital and were in a trial of some sort? Do you still go? Do they keep a close eye on you?
Fingers crossed for you. I forgot it was CBD that you had not PSP. Still I would check the Yoga out!
My husband had the same problem with the “trolly” we call it a ustep walker it is weighted in the front to prevent backward falls, but he does not have the use of his left hand either and had repeated falls trying to turn with one hand. As a boater, we love your barge boat.
Dear Patrick your barge looked amazing! Once again I love hearing from you, be careful with your new shopper! You are inspirational and rather wonderful x
Thank you, Bargiepat, for the update. In the video your walk looks good, but I am sure if you say it is getting worst that in comparison it is.
My son had PSP, although he did not have an autopsy, so I don't know for positive, but his last DX, Jan 2017 (died May 4, 2017) was PSP and his first symptoms (March 2014) were DOUBLE VISION and slurred speech.....anyway, all the neurologists he saw said that EXERCISE was important to slow the progression and help quality of life , especially walking. I remember my son sharing with the Neuro that he was NOT walking (anymore for exercise) but riding the stationary bike. The Neuro told him , if possible to get back to walking. So, maybe this is true for CBD.....both Prime of life brain diseases.
My son never fell, but only because anytime he was up an about after Jan 1, 2017, there was me or his paid caretaker walking right beside my son and his walker. When he had the seizure, his paid caretaker caught him. I share this because it might NOT be feasible but if you could get someone (paid?) to walk with you, right beside you, everyday on a routine basis it might help. The company would be good for you , and perhaps give you a bit of security.
When my son was in the hospital for his 2nd bout of pneumonia (7/8 days) I got him out of bed each day and walked the halls with him.
I realize that YOU have to weigh the effort against the result and this advice is not something you choose to follow.
I read your sharing on the agreement you have with your sister to take you to Switzerland when you decide that the quality of life has become too disappointing. I am glad that you have decided to be the "master of your life" and not leave it to fate.
I like the photo of the inside of your barge. I think awhile ago you posted the outside...or maybe my imagination.
Well, I have a dental appointment that I need to get to. I'm happy to report that after three weeks, except for some fatigue, my flu is gone. HURRAH! BTW, I have not given up trying to find the name of the actress that looks like your son's fiancee.
Margarita, Thx for sharing your son's Neuro's advice re walking vs ex. bike. During our rainy winter I'd thought the bike wd be as good, but I think we have to get our raincoats on and get out there!!
raincitygirl, I always tried to balance what the Neuro said with what I perceived to be the reality of my son's existence. My son was reluctant to go outside and walk, but he embraced his bike. So, I gave thanks for the bike as opposed to NO exercise.
When my son was well he would go for a 3 mile walk each day.....up and down hilly area. The irony of this disease.
Margarita, although my husband has been getting PT since his diagnosis, as well as riding a stationary bicycle at home, we are going to try something new. It has evolved from BIG and is done by a neurologic PT. Neurologic physical therapy focuses on evaluating and treating individuals who suffer movement problems because of disease or injury to the nervous system It will be done by Re-Active physical therapy and Wellness in Westchester. I just wish I had known about it sooner.
Christine 47 I always enjoy reading your sharings as they always contain useful information. When my son was sick I had intentions to come to Westchester to meet you. I NOW have time, and my energy is coming back (from both my grief and flu). I will contact you and find a mutual convenient time if you are willing.
Hi Patrick, this post struck a real note with me, because my late partner David was a boater with his own narrowboat when I met him. David bought his boat as a shell and completely fitted it out himself using off cuts of wood from local stores. a he did everything on a budget, and the final result was an amazing narrowboat, just like yours.
You had a lovely boat, but just like my David, you have had to leave it because of PSP. It makes me cry so much, it isn't fair that you have to leave your homes. I'm in tears now, just replying to your post.
Please look after yourself, and I really hope that your trolley keeps you mobile for a long time yet.
Thank you for sharing, I love photos! My CBD hubby & I were 'RVers' and loved the experience of making a small, efficient, movable home. The years we got to travel just after I retired were our happiest, and the pictures and memories sustain me.
Good luck with the trolley - looks like you've got a good tool there to ensure you get out. Hubby knows what you mean by kicking the wheels of the rollator - that happens wirh him too.
Keep on with the good work- you are doing so well! 🌟
My rehabilitation doctor says that the correct gymnastics done WITHOUT help is worth 10, the one done with the help of the physiotherapist is worth 4 and the one done only by the physiotherapist is worth 1.
That is to say. All the movements that can be done WITHOUT help, make them !!
Hello Patrick love your pictures,your boat looks amazing. We went along to the local parkinson centre yesterday for my husband to be assessed for a twelve week exercise programme specific ly aimed at parkinson type illnesses ,he starts next week ,I just wondered if there is anything similar in your area it might help ,maybe worth asking the district nurse about ,it know what you mean about falling over the wheels ,mick can't pull mine always hitting his ankles. X
Pat, that picture of your boat is something to conjure dreams with, so bright and artful and neat. What great experiences you have had. Thanks for letting us in! Best wishes, Sarah
My bedroom was at the far end........ you can just see my bed.
I have just been revisiting my images and found this view from my bedroom porthole, and the comment. "I am moored just above Houghton lock on the Great Ouse. On my way home now, only 224 miles and 104 locks till I get back to Derby for the winter."
Hi Patrick Your barge looks amazing and I can only imagine the adventures you must have had on it. A truly great passion. You are to be admired for your perseverance and fight towards PSP. I wish my husband had even a little of that. He is a professional musician who has played with some of the greats and now although surrounded by his beautiful instruments he cannot play anymore and has lost interest in trying. Oh to hear him sing was an experience in itself, amazing!It breaks my heart watching him losing everything bit by bit every day. He won't accept help from anyone except me. It's like admitting he is ill, which he just will not do, and because of this stubbornness he is missing out on so much. I try to encourage him every chance I get, sometimes he will allow me to help but most of the time he still insists he can do it himself. I wish you well Patrick and best of luck with your new shopper.
I do not know if you could use your left arm at all. Ruth with her CBD is weak in the right arm but can still use a rollator. We bought a Lets Go Out rollator - big wheels which do not get caught up so easily and lots of space for the feet. £250 (once VAT returned) so not cheap, but works well outdoors even on country tracks and provides loads of balance (and can double up as a temporary wheelchair if needed). But you've got to be able to use both hands which is clearly a problem for your good self.
I hope to use mine down in the field/park at the end of my road when the weather gets warmer. There are no seats in the field but my shopper can easily transform into one.......
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