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Hello MD community!
Hello,
We live in the US and are glad to have found this support group. My husband has Becker’s and is in his mid 30s. Able to walk but noticing an increase in weakness at hips, knees and shoulders. Wondering others experiences with loss of mobility. Any general advice.
Thank you, God Bless each of you!Reply To: Hello MD community!HI and welcome to forum
I gradually started using aids to walk. First just hiring when shopping or on holiday. Introduction of walking sticks on occasion Then having a powerchair in work. I started using a powerchair full time when I could no longer stand to get my scooter out standard car. Since getting a van I can drive direct from my wheelchair I quickly adapted to using the powerchair full time.
The best advice is to be open minded when a aid or adaption could help. it could be extra grab bars around house, Handrails on outside steps or putting a ramp in. I avoided any intervention for far to long. I wish I had been able to adapt house more while I had more walking ability.
Reply To: Hello MD community!Hello and welcome. Cats advice is, as usual, very sound. However I would also like to add that you should plan ahead, not just about mobility problems etc which are of course vital, but about him as a person. You have not indicated whether or not he is working but I wold assume he has so far had a reasonably active lie so far. Are any of his ‘normal’ activities going to be curtailed or indeed cancelled should he get worse? If so what will fill the gap? Keeping his mind occupied is , in my opinion, just as important as keeping him mobile. I had to plan very quickly when I lost my job as a consequence of my FHSD. I then lost my other job, a wedding photographer, because I could no longer perform the acrobatics and hold a camera fr hours at a time. Eventually I am finding I cannot hold the camera for landscapes, so I needed a tripod. How can I carry that as well as the camera? With difficulty at the moment, but soon to be impossible. So I am now thinking will my mobile do wha I need in the future? You can see how this argument is going I think? The same situation applies to my drone flying as a professional pilot. Thus throughout all these changes, which are, of course, unique to me, I have tried to plan ahead to keep me feeling busy.
I have also tried to do the same with mobility. I first used one walking pole (great because it also supports my spine somewhat), then eventually two. A did get a scooter (zum zum as one of my grandchildren puts it). Initially one that can be taken down and put in the boot. That i itself needed planning as each car I had need to be big enough to cope. Eventually I needed, for us her, a road legal one as all the pavements are blocked, and I also need to go off road as we live in a village. Now I have a wheelchair accessible van, similar to Cat’s. I can drive the whole thing in, move over to the driving seat , and then drive myself.
One thing that you will also notice is that all these things cost money, and maybe more so on your side of the water. another reason to plan ahead. I could give you another story but you will be bored by now I am sure.
Do please come back if you have any questions we will always try to help.Mike
So many love songs, so little love.
Reply To: Hello MD community!Mike did you get any help Towards the cost of you mobility needs
Reply To: Hello MD community!Hi there, I too have Becker MD, I was diagnosed at 28, I am now 45 and still ambulant; I have been using a stick for the last year and a bit.
Reply To: Hello MD community!I got none at all towards my scooter, or latterly my WAV. I am now on my third scooter. My parents paid for my first two, I bought the third second hand. I had to buy the last one as I could not get to my parents house 100yds away as the pavements were blocked with cars so I had to buy a road legal one. I had no help from the SS for a stair lift as, because of my pension, I had too much money coming in.
Mike
So many love songs, so little love.
Reply To: Hello MD community!Thank you all for your replies. It is so nice to hear your experiences and advice. My husband is still working as a teacher and is as active around the house and likes to fish.
I appreciate the wise advice to think ahead and what activities may keep his mind active. He prefers to move and walk on his own at work as long as he is able. Though having had a few recent falls I am wondering if it is more risky to keep walking unassisted.
In your experiences has any exercise impacted the speed of atrophy? We have had mixed advice from doctors, some say don’t work out and some say to do light weights.
How encouraging to hear from Ranal that you are still ambulant.
Reply To: Hello MD community!My neurologist told me to “use it or lose it” with regards to walking, i had queried whether I should consider using a mobility scooter. I have thought about using one partially on my daily dog walk (Staffordshire Bull Terrier fyi) but I fear it would be vandalised or stolen.
If I do get a scooter or wheelchair, it would have to be instead of my car. I simply couldn’t afford to run both. I use my car to drive to a suitable dog walking area. Nothing is simple !
Reply To: Hello MD community!I agree with Ranald and his doctor. You must “use it or lose it”. I have been given the same advice by my physios, and also saw the consequences of not doing it over many years in the NHS. There is a big BUT here. Whatever you do must be sensible and balanced. I have always thought of myself as a battery. I can do some things and recover very easily, as my battery gets recharged. Others will make my battery go flat very quickly, and that not only takes a lot more recharging but can also damage the battery along the way as well. I will admit that the temptation gets too great sometimes and I do more than I should. That reminds me of where my limits are, as well as reminding me that I am not improving as I get older.
I have had lots of good times on my scooter. For example my granddaughter would not go in to see a doctor, until I offered her a ride. My wife loves it for Christmas shopping as she can load it up with bags. So if and when your husband needs one, go for it, you will not regret it. Until then canes or walking poles will keep him going.Mike
So many love songs, so little love.
Reply To: Hello MD community!I think many mixed views on exercise.
When I started to get leg weakness before I realised it was a MD issue and with continually going to doctors with no help I decided to embark on heavy weight training routine in which I feel I have progressed this in a small way
I did alot of research and would now only do isometric training with light weights and not concentric or eccentric movements with weights.
I have since did a small test were I trained concentric / eccentric and a few days after had ck blood tests with levels 17000
Then did isometric training and ck blood test with levels 6000
Lower ck less muscle damage
YouTube isometric training and use light weights.
Reply To: Hello MD community!All very interesting comments, brought a small armchair exercise arm /leg cycle, doesn’t seem to matter what type of exercise I try, it cause joint pains and shaky legs, I have opmd, I haven’t seen a genetic councilor or had any physio as yet,so don’t know whether what I am doing is wrong or right, but after reading all of your comments it’s all pretty much the same for all on here, I’ll just have to keep trying. Cc
Reply To: Hello MD community!I think there’s a fact sheet about exercise. Let me go dig it out…
A learning experience is one of those things that say, “You know that thing you just did? Don’t do that.” - Douglas Adams
Reply To: Hello MD community!Here it is…
A learning experience is one of those things that say, “You know that thing you just did? Don’t do that.” - Douglas Adams
Reply To: Hello MD community!Thank you for your reply cc
Reply To: Hello MD community!Thank you for sharing. It has been frustrating speaking to so many doctors in the us that are unfamiliar and unprepared to talk to us about Becker’s. My husband is becoming very anti doctors because of it.
I have to trust his self awareness and God’s protection.
In the morning his shoulders are very stiff and hard to move as well as painful. They loosen up as the day goes on but does anyone have any holistic advice? Is this a sign that he is entering a new phase Of atrophy?
He has fallen several times this month and by God’s Grace he is okay.
I hope you are all well today.
Reply To: Hello MD community!Infrared sauna or any sauna maybe.
Yes I agree doctors don’t want to comment or suggest things as basically many know nothing about it.
Reply To: Hello MD community!Passive assisted stretches help warm up muscle and maintain mobility in joints. Reduce tendon shrinkage. My family or carers do stretches with with my arms and legs every morning to help wake muscles up for the day.
It could be his MD progressing or could be combination of aging, just coming out of a long winter plus the effects of covid restrictions making us less mobile and doing less normal social stuff. My health and mobility has really taken a series dip in this last year where I havent been able to access my normal routine of going to work, disability sports and activates.
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